#966: “Boundaries, Love, Death, Denial, Manners, & Kink” or “1 Husband, 1 Lover, 1 Burned-Out Caregiver & The Next Five Years”

Hi Captain! All names have been changed to protect the guilty. Sorry this is long, but the backstory is rather necessary.

I’m a 45 year old pansexual poly woman. I’ve been with Wolfie since I was 18, married him at 23, and had two sons with him, who are now both out of the house. We’re also kinky, both dominants. I met Jon through a kink website, and while our relationship started as purely D/s play partners with friendship, we’ve fallen in love over time. Jon wears my collar. Wolfie’s known about the relationship with Jon from the beginning. Wolfie and Jon get along really well. Over the last four years, Jon and I have gotten much closer. And he confessed last fall that he wants to marry me when Wolfie dies.

Wolfie’s ten years older than me, so he’s 55, and while I knew demographics suggested I’d outlive him, it’s another thing to have it brought home to you when you’re still feeling young. He smoked for most of our marriage and well before, has worked a lot of physical jobs, gotten in a lot of fights, and…. the outcome is congestive heart failure, COPD, arthritis in all his joints, and diabetes. He’s on disability. I could wake up to him dead in bed beside me tomorrow, to put it bluntly. As it is, I’m pretty sure he won’t make it to 60. He is not trying to manage his conditions. He is in total denial of all of this. As far as he’s concerned, he has about thirty years of happy retirement to look forward to.

I had been going down (it’s an hour drive, we live on opposite sides of a large metropolitan area) to see Jon for the weekend once a month for about eight months of 2016/17. Jon developed a drinking problem last fall, and in the course of his achieving sobriety, I spent a week with him on a couple of different occasions, and that blew away any reservations we had about our eventual future. We also grew close enough, and our relationship deepened enough, that I now view myself as having two primary partners. We three decided that Wolfie and I should come down to Jon’s place and spend the weekend, unless Wolfie was busy, in which case he’d drop me off or Jon would come get me and Jon and I would have the weekend alone.

Well, I’ve done two weekends with Jon alone, and one weekend with Jon and Wolfie, and Jon said to me that Saturday night, “Next weekend, I’d rather have neither of you come than both of you come.” And I understood why. Wolfie likes to be the center of attention. He has needs. Actually, he has NEEDS. It’s hard for him to get up and down, and the arthritis makes it hard for him to stand very long at all. And he has no wind, so he gets out of breath at the slightest exertion. So it’s, “Get me a glass of tea. Get me the ketchup. Pick up the fork I dropped. Help me on with my shoes. Take my socks off.” He also needs to be the most important man in my life, flattered and reassured constantly. It honestly feels like having a child hanging off me. When I’m at home, it even interferes with the housework and cooking; he wants me to be right there within view.

This is newish behavior. He’s never been the same after the hospitalization in 2015 when they found out he had congestive heart failure and drained 30 pounds of fluid. He’s King Baby all the time now. It’s interfering with his relationship with his sons, and it’s building up a lot of unhappiness in me. Needless to say, our sex life is non existent. I have my time with Jon as a safety valve…. 50 or so hours where I get to be a beloved and adored adult woman with her own needs and desires sweetly catered to, and then back to the rest of the week of caregiving for someone who never says “Thank you.” I can stand it, because I don’t have to stand it for another five years, even. He’s already showing signs of the heart failure getting worse.

I know that I should hold a firm boundary with him about my weekends with Jon. But if I am firm about this, he will get tremendously hurt, yell, and start talking about how maybe he should go talk to a lawyer about a divorce. I don’t want to divorce him. I love him, and have loved him, for more than half my life. It matters to me to be beside him when he goes. And while Wolfie knows (we did have this conversation last fall) that Jon wants to marry me someday, so “he doesn’t have to worry about me”, he’s not willing to do some other things that need to be done. I’d like him to write down the stories about his firearm collection so his sons can have them, for example. I’d like to clean out the basement. And I can’t talk about this stuff because he’s totally in denial.

So how do I hold my boundary without destroying my marriage or damaging my other relationship? And how do I cope with the denial without going insane?

Thanks in advance to all.
The Lady Perplexed

Dear Perplexed,

That’s a lot to sit with right there, Perplexed Lady. Let’s sit with it together.

I. The Five Year Plan

If Wolfie did in fact have “another thirty years of happy retirement to look forward to,” that’s a good thing, right? The two of you, growing old together, you staying on as the loyal caretaker and wife, visiting Jon on the odd weekend, forever, for the rest of your lives? That’s what you want! Yaaaaaayyyy!

I can stand it, because I don’t have to stand it for another five years, even.”

Oh.

My dear Lady Perplexed, it sounds like part of you is waiting for Wolfie to die so that you can both be the loyal, loving wife who stood by him until the end and then finally be happy and start over with Jon.

Meaning, you are one burned-out caregiver, having not-uncommon-burned-out-caregiver thoughts that are very ugly and guilt-inducing when dragged out into the light in front of strangers. These thoughts borne of grief and stress are not the whole of you, or your love, or your relationship, but they are something you should pay attention to. Think of them as canaries in the coal mine of your happiness.

If you’re committed to being there for Wolfie as long as you need to be there, then you need to make your day-to-day life sustainable and not just live for those weekends away.

To do this, at minimum, you need:

  • Time to yourself. You need your weekends with Jon, and you also need a certain amount of time to exercise, read, rest, recharge, take care of your own health, and hear your own thoughts without interruption.
  • People to talk to who aren’t Wolfie or Jon. Friends, a counselor, an online support group. Fellow kinksters and/or kink-aware professionals who will understand your situation. People you aren’t sexually involved with, people who don’t have a vested interest in your choices. You can’t do this alone.
  • Help with caregiving. Caring for someone full-time is a job. The people who do that job do not do it 24-7 and they don’t do it for people they have complicated emotional and financial ties to. You need help.
  • Time with Wolfie that isn’t just about you caring for him. Is it time for a return to Date Night, even if that looks like ordering in and watching a favorite movie or playing games together? Can you ask him to take the lead in thinking about something you could do together that week?

Would you be this committed if you knew he’d be around longer? Is it possible for you to have a happy and rewarding life soon, or now, inside this marriage? Those are questions I can’t answer for you. Let’s stick to the minimum today.

II. Standards & Practices

I think you and Wolfie need a professional caregiver to come in at least some of the time and I think you need this now. Wolfie is going to resist this, and you need to do it anyway, in part because a professional caregiver will have boundaries. S/he will enforce boundaries with Wolfie and model expectations for you.

True story: My grandparents were in their 80s, living at home, and my mom helped sign them up for Meals on Wheels. Finally, my grandma wouldn’t have to cook three meals a day and could get a little bit of a break. Except my Grampa [“King Baby” is a great term, btw] complained constantly about the food: he hated it, wouldn’t eat it, it was the worst ever, it was disgusting, why was she putting him through this, couldn’t she just cook? My grandma was not a gourmet, y’all. Canned vegetables heated in the microwave, a lot of Campbell’s soup, a lot of sandwiches, Spaghettios, franks & beans, fish sticks, the odd casserole — Trust me when I say that the switch to Meals on Wheels wasn’t like being married to Ina Garten one day and living out of a campus vending machine the next. Anyway, she made so much friction about it that it became “easier” just for her to do all the cooking.

After she died, Grampa asked my mom if he could have the Meals on Wheels again. “But you hate it!” my mom said. “No, I love it!” he said. “Then sign up yourself! Here’s the number!” she said. She was (rightly) furious. When it could have given her mom a respite from cooking, Grampa wanted nothing to do with it. He wanted to be fussed over and waited on, specifically by Grandma, or it didn’t count. We had a running joke in our family, where, whenever Grampa came over I’d set the table with every possible utensil, textile, and condiment I could think of next to his plate, because he would always, no matter what, without fail, request something that wasn’t on the table. Not this kind of mustard, the other kind. Not this knife, another one. Not this kind of napkin, one of those dish towels. Tablecloth on the table? Could he have a placemat, too? Did we have any mint jelly, by chance? My brothers and I would take bets about what it would be, something, anything, to get either me or my mom (never my dad or brothers, hrmmm, strange) to get up and fetch it for him and fuss over him. He did this to my Grandma at breakfast lunch and dinner for 60 years, which explains the other family “joke” at mealtimes: “Grandma, sit down! We’re not going to start eating until you sit down! We don’t need anything, just eat!” He’d trained her to never, ever let herself get settled into her chair.

A professional caregiver can help Wolfie with things he can’t do himself. Someone like an occupational therapist can help him find workarounds so that he can do more things himself. Neither of these people will treat a dropped fork like a crisis that requires an emotional performance of homage. Wolfie probably won’t like that, especially at first, but the more he can do for himself the better he will feel, and your relationship will be healthier for it.

III. Summoning The Cavalry/The Story Of The Guns

Call your sons. Tell them some stuff and ask them for some stuff.

  • “Son/Sons, y’all know that your dad is not in good health right now?”
  • “We’re doing our best, but he needs a lot of care, and I need a respite sometimes. Can I count on you for some help with this?”
  • “Specifically, I’d like you to each take a turn, one weekend a month, of being ‘on call’ for him so I can get away for a day or two and recharge. Sometimes that could just mean giving him a call or dropping by to see if he needs anything, but I hope you’ll spend some quality time together, too.”
  • “I know, it’s really hard to think about him getting older, but it’s time to get honest about this as a family. I need some help here, and I want him to tell you the family stories while he still can.”
  • “Thank you, this will help me a lot. Let’s figure out a schedule together. Love you.”

I know, geography might not be in your favor, I know, everyone is busy and it might not work every weekend, I know, he might need more intense care than a phone call or dropping by, so, okay, what can be done? Your sons might say no, which, okay, it’s their decision and their loss. If you haven’t already asked, it’s time to ask.

See also: Call Wolfie’s other family members and friends to help you. Call them so that you don’t burn out. Call them because chronic illness is lonely and depressing and isolating and this is a way to fight that, for both of you.

IV. Fuck Cleaning The Basement

Ever quit a job, and as soon as you give your notice, your boss dredges up a million projects that were never really a priority before but now they simply must be finished before you go? Like, two years of neglected work that is now supposed to be magically completed in two weeks? Wishful thinking and denial in the face of impending absence takes many forms.

If Wolfie has trouble putting on his own socks, how’s he gonna clean out this basement, exactly?

We die in the middle of the things we didn’t finish. Five years or five minutes or five decades from now, Wolfie will die in the middle of something unfinished, too. Denial won’t stop it coming. Acceptance won’t, either. In his shoes, you would want to do everything you could to wrap things up as cleanly as possible for him for when you’re gone, but you’re not the boss of his (possibly) impending death and how he faces or doesn’t face it. Can we really judge him if he needs to believe it will come “someday, a long time from now,” out of the blue, a complete surprise? Could anything be more common, more human, than that wish?

So, you have limited time and energy and you need to budget them. Save your Difficult Conversation Units for the essential stuff and for stuff that improves your quality of life now. For example:

  • Do you both have updated wills, medical directives, and the insurance you need in place in case something happens? (We owe this work to our spouses, even if it sucks to think about, so this is worth pushing).
  • Can you get the periodic respites from caregiving you need now, be they weekends with Jon or the freedom to be in a different part of the house for a while? (You need this, so, push for it).
  • What caregiving assistance can you hire, or access through your community? Now? In the future, especially if he deteriorates more? (You both have a right to draw on whatever resources and safety net you can).

If you’re looking for avenues to practice acceptance and letting go, the basement is probably going to stay how it is until you decide to clean it. If your sons don’t ask for the stories behind the guns, they might not ever get them.

We die unfinished.

V. Calling The Bluff

Next time you plan to visit Jon, tell Wolfie that you’re going alone from now on.

Him: “But we talked about me coming along.”

You: “I know, but I really need a little time away to recharge. I’ll see you Sunday.”

Him: “But how will I ____ without you?”

You: “Son 1 (Englebert) and Son 2 (Humperdinck) said they’ll drop by for a bit and keep their phones on this weekend, so call if you need them.”

Him: “But I need someone with me all the time.”

You: “Okay, then let’s call [Caregiving Agency] and set that up.”

Him: “But I need youuuuuuu!”/”If you loved me, you’d ______.”

You: “Love, I need this break. This isn’t a negotiation – I’m going solo.”

Him: “But I came last time and I thought it was a really good weekend. Do you and Jon not want me there?/You’d rather be with Jon than with me/Was this Jon’s idea?”

You: “I need these weekends to unwind and relax, and it’s hard for me to do if you’re there, too. It’s not a competition, please don’t make it one.”

Him: [yelling]”Well, maybe I should call a lawyer and see about getting a divorce!!!”

You: “Wow! A divorce would make me very sad, because I love you, and I don’t want that at all. But if you’re ready to divorce me because I need a couple of days to myself, I can’t stop you. It doesn’t change the fact that I still need that time.”

Four suggestions/things to remember:

  • Own the decision. Jon was the one who said “come alone or don’t come” (good job with boundaries, Jon!), but in your conversations with Wolfie you should own the decision and express it in terms of what you want/need/have decide.
  • Keep the conversation narrowly focused. The topic is “Solo Weekends With Jon: I Need Them” not “Mortality: It’s Looming. Any Thoughts?” or “Don’t Worry, When You Die, Jon Will Give Me The Cherishing I Deserve.”
  • Wolfie has choices about what he does about his feelings and how he treats you. If he wants to renegotiate the terms of your relationship, he can talk to you about that. If he has sad or lonely feelings he can call a friend or write a poem. You are not responsible for everything he feels or for ignoring your own needs to only cater to his.
  • Setting a boundary only works if you enforce it. If you give in and stay and let a fight derail your plans, you’ll teach him that threatening you and making a big stink works to get his way. On the other hand, he can only really make this threat once with any credibility. If he doesn’t back it up with action, you’ll know it’s just a bluff to manipulate you. (If you think he really would divorce you over this, then you need a lawyer and a plan for protecting yourself financially if that really were to happen.)

VI. Minding the Ps and Qs 

There are people who think that good manners are things you put on for company and that with family, bluntness is closeness. There are people who think that good manners and observing a few formalities like “please” and “thank you” are even more important when you live in close quarters. Mixed marriages occur all the time, and sometimes you need to say say “habits and upbringing be damned” and negotiate which kind of family you want to be.

Being sick is exhausting, and Wolfie probably has little energy left over for asking nicely when he needs something. There are times when a terse “Come help me!” has an extra layer of “Being vulnerable and asking for help sucks, and I am trusting you to come help me without needing a lot of negotiation or a performance of gratitude on my part.

But if the terseness or rudeness or constant catering to him is wearing you down, ask for something different. Save the conversation for when he’s not in a crisis mode and for a request that isn’t urgent. Maybe a script could be:

Wolfie, if you say ‘Come help me!’ or just yell my name from the next room, I’ve been reading that as ‘Emergency! drop what you’re doing and come right now!’ It’s not sustainable to do that all day, every day. If something is not an emergency, can you try making it sound less like a command? With a ‘please’ and a ‘thank you’ attached?

He may grumble, or not understand why you need this – “I shouldn’t have to thank you for everything you do, you’re my wife!” – try saying “No, but it would make me really happy if you did it sometimes, when you’re able. Can you try?

Y’all are kinky and have made polyamory work for you for years, so I bet you know how to negotiate a lot of tough things. Try negotiating this the way you would that? With humor, and trust? “This isn’t a scene, so, ‘Get me a glass of tea’ isn’t gonna fly, Lord Domly Pants.

 

 

That’s the sitting time I’ve got today. I hope you can take some of the pressure off, get some boundaries in place, and figure out what you want and need from the next five years and beyond.

Edited To Add:

  1. The more the Letter Writer updated, the more it became clear that this is a highly untenable and emotionally abusive situation, where every one of her needs comes in second to Wolfie’s. Get the foot surgery. Call in every resource you can…FOR YOU. Call social workers, doctors, and think about talking to a domestic violence hotline or counselor. Even if you can’t call it “abuse” yet, even if it hasn’t crossed over into hitting or whatever your threshhold is, I think a kind, trained person who will believe you and connect you with resources can be really helpful right now.
  2. The comment discussion has grown beyond what I can reasonably moderate. Thanks to all who left helpful, respectful comments. Discussion closed as of 5/22.

 

 

 

275 comments
  1. hangtown said:

    I’ll be honest, this one was hard to read. I had a hard time getting past the tone of “What do I do till old crankypants dies?” Even if he’s in denial, he can’t be happy with how things are now, and he’s showing it.

    So I was impressed that you could see past that and respect her as a burned out caregiver, and give good advice.

    I’m thinking, though, that in the Calling his Bluff stage, why not level with him and say “I’m going to Jon’s alone from now on. Last time you came along, you made it all about you and wanted so much attention it wasn’t fun for me or Jon.”?
    Yes, he’ll say “But I needed all that help! I can’t pick up my socks! Why are you turning on me?”
    And he’ll say “I promise, I won’t do that. Now can I come along?”
    Plus a bunch of other stuff you can imagine.

    It seems wrong to ignore the elephant in the room and not at least give him a chance to understand and possibly try to change. It seems wrong not to be honest.

    • JenniferP said:

      It depends on what the LW wants: Wolfie promising to change and behave better (and still coming along, and getting one more chance, and one more chance, because this is a negotiation now and not a boundary) vs. Solo weekends with Jon, minus Wolfie.

      • Really it’s not LW’s place to have that negotiation; Jon made his position clear, though he may have said “rather” and only spoke of next weekend, not other future ones. Jon owes LW some flexibility if he’s going to put her in the position of being the bad guy so he doesn’t have to be the one to tell Wolfie not to come, but in the end it’s his home and he can set the terms for who comes and who doesn’t.

        And I’d contest that it’s necessarily wrong to decide you’re not interested in having that discussion and just want to nope out. Houseguests – even beloved ones – are a chore. Deciding that someone isn’t a great guest and you’d like to have them around fewer times rather than get into a boundary-setting exercise with one seems completely reasonable to me.

        • It was reasonable to me. Jon should not feel triggered and trapped and unable to speak his mind in his own home. That’s a totally fair boundary.

      • hangtown said:

        Hmm, I didn’t see it as a negotiation, but as being honest. He still doesn’t get to come along, but she’s telling him clearly why.

        • Anon, Goodnight said:

          Reasons are for reasonable people. Someone who greets not getting 100% of his wife’s attention with “Maybe I’ll just divorce you” doesn’t fall into the reasonable category in my book. For someone in “King Baby” mode, any reason is just ammo for treating your boundary as a negotiation.

    • efmather2006 said:

      My thought would be: is there a neutral person – a friend, peer, social worker, whoever – who is NOT Wolfie ‘s wife or sons or other family, who could handle the denial and elephant in the room with him, separate from the LW?

      In my experience, the thought of death, and/or your own incapitation , is so overwhelming you don’t discuss it with your loved ones. Maybe there’s someone more removed who can take that on.

      • He’s seeing a therapist, but they are mostly working on his food addiction and the emotional fallout from his Darth Vader mother dying(2016). I’ve gone in a time or two with him, and he alluded to the denial, but I can’t make him choose to work on that, rather than everything else.

    • Temperance said:

      He has had the chance to change, though. Every single time he treats her like a servant, he has the opportunity to do better next time.

      I do think he might be caught in a loop of feeling sorry for himself, which could be why, in his mind, he feels that he deserves her complete, rapt attention for very minor, unimportant tasks he should be doing for himself if at all possible. It could very well be a case of, oh, well, LW isn’t in bad health, so she should be happy to help me.

      • I hurt, he hurts worse. He has something happen, it’s THE WORST PAIN EVER, I have something happen, it’s, “Oh, I’m sorry. (pause) “So, you going to cook supper in a bit?”

        • JMegan said:

          Aw, you must be exhausted. I hope you can get some time to rest and recharge, and soon!

        • bat lord said:

          I’m sorry. He doesn’t have to act like that, no matter how much he’s suffering. (I had a vaguely similar situation with a roommate/Important Person who was severely depressed and chronically ill, and they made it clear in a lot of subtle ways that they were always suffering more than I was, and that their pain meant they should always be priority #1. It took me until after I moved out to realize that I was genuinely allowed to come first sometimes, even if the other person was “worse off” than me)

        • I hurt, he hurts worse

          My husband’s dad was like this. In addition to not wanting to hire a retired RN who did in-home caregiving because the soup she made them “didn’t have enough salt,” he was the bride at every wedding and the corpse at every funeral. He read Elizabeth Warren’s book and told my husband, “She might have had a bad childhood but mine was worse.”

          BTW, my husband’s parents made a “Demise List” ten years before they died and did not do one single thing on it.

    • He’ll be outraged. He does not do that! I just don’t love him any more…. et cetera.

      • sayevet said:

        Thank you for joining us. Those manipulative responses are designed to make *you* feel bad and change *your* behaviour to suit him. Remember that (a) the responses are not true, and (b) you’re the one who needs change in order to find peace.

      • Amy said:

        OP, I’m noticing a couple trends in your writing. One is about Wolfie. He’s in pain and struggling with his health, amd it limits what he can do a lot…but he can do some things. And the list of things he can do (riding his bike, getting himself fed if you’re gone for a weekend, going out in the truck) sound like things he wants to do, while the list of things he can’t do (picking up after himself when he gets things out, getting a drink or food when you are home, going through his stockpiles of stuff) sounds mostly like stuff he doesn’t want to do.

        I’m not saying he’s totally faking it to get out of doing stuff or anything like that…but I do wonder if there are a couple little things that he could be doing that would take the pressure off you. Like putting his own dishes away, or getting his own drinks even when you’re home, or putting stuff away when he’s done if he takes it out to do a hobby. Yes, it might hurt, but…well, doing literally everything is causing you a lot of pain too, both physical and stress/emotional–balancing a couple little things like that might go a long way towards giving you some breathing room, and if he can manage it when you’re gone, I’m thinking he can probably manage it other times as well.

        The other trend is about you. It seems like everything you need in your life is turning into a ‘later’ thing. You can’t go to the gym because Wolfie wants the truck now and needs money now, so you’ll do it some other time. You can’t get your own medical needs met because no one can take care of you right now/Wolfie’s needs are the priority. You’re writing in to ask if you can take a weekend without Wolfie, which means it’s at least a question in your mind rather than a ‘yes definitely you can do this’. You can’t insist on a couple hours a week where you’re not juggling Wolfie’s needs and demands, because it’s just too much of a burden on everyone else.

        Please value your own needs!!! If you can figure out how to access your foot surgery financially, you can probably work with your older son to schedule surgery for a time when he can be around to take care of you. If you want to be going to the gym, you can tell Wolfie that you need the truck for a certain time slot, and he can do things before or after that–your outings aren’t less important than his, he can share. You can schedule time with your sons where they will be ‘on call’ to handle their dad’s needs, so you can have a little breathing room–yes, you want to account for their other obligations and scheduled things, but there’s compromises to be made between putting the whole burden on them and doing absolutely everything yourself. And absolutely yes, take your weekends with Jon–you deserve the occasional days off from being a full-time caregiver, any caregiver deserves that.

        • Amy said:

          Oops, this was supposed to be an individual comment, not a reply! Not sure what happened here.

      • Rube N00b said:

        Totally, totally different tack. Bear with me…

        -To me, it really sounds like both of you are saying that you want to shift away from this relationship being a primary one rooted in marriage. It’s no surprise that a relationship you went into as a childless 18 year old does not fit you today. He keeps telling you he wants something very different than what you can provide. On this end, we of this blog largely think what he wants is unrealistic and cruel to you. Meanwhile, he’s clearly fine with his requests of you.

        But, what if we honor his very consistent wishes, and this marriage is allowed to shift out to a lesser relationship where you’re not married or sharing a home, freeing both of you to seek other partners?

        Maybe Wolfie’s perfect no-sex, sock picker upper, butler and fellow hoarder soulmate is actually out there. Can you let him go with love to seek that? Can you love what you had enough to thank it for what you’ve learned, and move on?

    • TO_Ont said:

      He isn’t invited, though. Jon was pretty clear though that she is invited alone or not at all. So Wolfie going to Jon’s house is off the tab.le

    • Bartleby the Caregiver (aka Bad Caregiver) said:

      @hangtown:

      I’ll be honest, this one was hard to read. I had a hard time getting past the tone of “What do I do till old crankypants dies? … So I was impressed that you could see past that and respect her as a burned out caregiver …”

      As a burned-out caregiver, it didn’t even occur to me that somebody would have a problem with the tone until I read your comment. Yeah, it really can get that bad.

      I’m thinking, though, that in the Calling his Bluff stage, why not level with him and say “I’m going to Jon’s alone from now on. Last time you came along, you made it all about you and wanted so much attention it wasn’t fun for me or Jon.”?

      Leveling with the person is great … but maybe not in this particular situation, where Jon is the one who put his foot down. If LW makes it sound like her decision, as CA wisely suggests, that implies that she’s open to negotiation. Even if she owns the decision, she doesn’t have the right or the ability to change it.

      • bat lord said:

        Yeah, I’ve hit burnout/compassion fatigue on more than one occasion too, and I was also surprised at hangtown’s response. I guess it can sound pretty bad when you haven’t had that experience.

        • Strawberry Sunrise said:

          I have never been a caregiver and no one close to me (parents, extended family members, other loved ones) has been in that situation during my life—and I was also extremely, extremely surprised to see a shaming comment, especially as the very first one.

          • bluefynch said:

            Can’t speak for the poster of the comment, but this could be a case of tensions between caregiver experiences/triggers and PWD experiences/triggers. As a person who’s needed caregivers (and dealt with some abusive ones who nevertheless used me for martyr points), my automatic response to the story was to empathize more with the caree than the carer.

      • Same. My husband was disabled by a serious stroke, and was also a hoarder, and had been profoundly selfish before the stroke, and his personality collapsed into a neutron star of need and anger afterward, and I read Hangtown’s comment and actually felt kind of violent for a second.

    • Phospher said:

      I have to think you haven’t been close to a situation like this. Frankly, even if LW wasn’t as burned out as she is it’s completely rational to think about how a situation with a probably-life-limited person is going to end. Added to that that LW’s evidently pouring attention and energy into him all the time, to think “I can continue to perform this *extremely high* level of care because I know it’s not forever” is not uncaring, it’s the opposite.

  2. automaticdoor said:

    This is so tough, but I’m so glad that CA recommended the link she did–assuming you are in the US, I was going to suggest the National Family Caregiver Support Program, which is linked from the page CA linked. Google “National Family Caregiver Support Program” + your state to find resources. They are technically under the Older Americans Act, but I think you would qualify for their services as a non-parent family caregiver who is caring for an adult under 60 with disabilities. They offer respite care, information and assistance, counseling, support groups, and supplemental services. Please, please look into this program. It is so valuable.

    • I’ll definitely do that. We run into poverty issues, as a lot of the problems we have can be solved or at least made much more comfortable by throwing money at them.

      • Poverty makes everything feel a hundred times harder. Jedi hugs, I share that feeling of knowing what it is like to be limited by money.

      • GreyjoyGardens said:

        That sucks! Having no money to throw at problems/save spoons makes things so much harder. A couple of things that I remember from when I had to coordinate care for my dad: If Wolfie is under a doctor’s care, his PCP or a specialist might be able to refer you to a social worker or caseworker at the hospital. My dad’s neurologist gave me a referral to a hospital social worker who was a big help.

        Second, there should be a Department of Aging / Department of Disability Services (they go by different names but it’s usually something like “Department of Aging and Adult Services” or “Department of Aging and Disability”) for your city or county. It really depends on the area (some are much more well-funded and helpful than others) but they might be able to help you. If Wolfie is on disability of any kind (Social Security or SSI) that can open more doors.

        Definitely YMMV, as, depending on the area, poly/kink might preclude seeking help from some categories of professionals – I live in a very liberal, blue area, but there are places where government help or outside help is not an option for alternative lifestyle folks; again, YMMV and you are the best judge of that. No matter what, it’s important to have a Team You and be able to take time for yourself to recharge.

        • SoGladItsSaturday said:

          Try “Area Agency on Aging” as a Google term as well.

  3. tcruzi said:

    I second home caregivers like woah. My grandparents and great-aunt had them for the last year of their lives and, frankly, hated them at first but grew to appreciate them. They particularly liked them when it became clear that my mom wasn’t going to be up there (upper Midwest-we lived in the southeast) every weekend, when gramma came home from the nursing home, when they didn’t have to go to a nursing home….

    One lesson from that- set up a contract where he can’t fire them. My grandpa “fired” his caregivers every day for a month or more. Also, make sure you can talk with him privately in case there are Issues with a caregiver, which happens more frequently than anyone would like.

    The occupational therapist is also a great idea. Some of the things they can do are help with tools to regain some independence- grabbers and sock put-re on-ers, for instance. Losing that independence can be hard and can turn a normally lovely person into a jerk.

    Either/both can help you be sane and turn into a caregiving wife rather than a caregiving mother. Sometimes being a caregiver is outsourcing the so you can have a job/life/sanity.

    • rydra_wong said:

      One lesson from that- set up a contract where he can’t fire them.

      There isn’t any mention of Wolfie’s mental capacity being impaired.

      Obviously, firing anyone would presumably be subject to the applicable employment codes, but what you seem to be imagining is a situation where the LW has control over who does or doesn’t get employed in their home but Wolfie doesn’t. That’s pretty disturbing.

      Yes, if he fires any and all professional caregivers as a way of forcing LW to do the work instead, that’s a huge problem that they’ll have to deal with. If they’re joint employers of caregivers and he wants to fire someone and the LW doesn’t, that’s something they’ll have to work out.

      But trying to deal with it by removing his control (over who does and doesn’t come into their home, about who’s going to be providing him with fairly basic physical care …) seems pretty inappropriate.

      Also, I doubt that the LW can “set up a contract” with a caregiver without Wolfie’s involvement and consent. Why should he agree to “By the way, you won’t be able to fire them but I will”?

      • The LW can hire someone to help her. This help can include things like laundry and litter box. Or anything really. I think such a person, will be necessary when she has her surgery, and might be an enormous stress reliever now.

    • Debby said:

      Purely practical: Agree, occupational therapist can help. So could physical therapist (no matter how disabled, P.T. can work at that level). If he has Medicare, these could be covered 100% under the home health benefit (it sounds like he might be sick enough to be considered homebound). If Medicare is paying, then physical therapist or RN will have to be the first to visit.

  4. randomcheeses said:

    I third the hired caregiver advice LW. It sounds to me like the situation with Wolfie is that you’ve basically got a full-time job as caregiver in addition to your actual work. You are doing the kind of work that people are well paid for and not even getting thanks for it never mind anything else. In those circumstances it’s perfectly normal that time with Jon would become even more important to you which in turn may be making Wolfie jealous/insecure. Hire a caregiver you can afford so that you can enjoy spending time with Wolfie again rather than counting down the days until you can get away from him. If he truly has not got long then you both deserve to be spending the most of the time he has left making pleasant memories together.

    Also, definitely if possible get your sons on board with helping you out. Even if an hour or two is all that’s feasible, it’s still an hour or two that you can give your stressed out body and brain a break.

  5. Jill said:

    I think LW owes her spouse a wee bit of grace. LW is assuming he’s in denial about his health. But it is possible that every time she spends a weekend away – especially with someone that clearly adores her – it’s a reminder to him that he will probably die sooner and she’ll go on to have this happy life without him, perhaps like he never mattered. So I would urge LW to speak to his doctors about possible depression and to encourage him to speak to his own counselor.

    That said – there’s only so much you can do to get someone to take charge of their own feelings about things. So AMEN AMEN AMEN to setting caregiver boundaries. My grandfather leached onto me the minute my Gramma died. It was very bizarre how I became the sole focus of his every need. He would get angry when I’d insist on another relative helping him – even when that relative had skills or training that made them more of an expert. (My mom’s a nurse and my sister is a pharmacist yet he’d get mad that *I* wouldn’t go to a doctor consult or lay his pills out for him, for example). He also had plenty of money but would get mad if I’d want to hire out for something.

    And I work full time and had two pregnancies during this time. Talk about burnout! So LW, call in reinforcements. Spend the money on hired help if you need to. I’ts money well spent. Carve out your own me-time. And do NOT feel guilty about it.

    • rydra_wong said:

      But it is possible that every time she spends a weekend away – especially with someone that clearly adores her – it’s a reminder to him that he will probably die sooner and she’ll go on to have this happy life without him, perhaps like he never mattered.

      Also, poly people are not magically immune to experiencing jealousy.

      It sounds like Wolfie’s health has got markedly worse since 2015 and his behaviour with it (perhaps because he’s feeling more vulnerable and dependent and scared, perhaps just because feeling ill and in pain makes it harder to be our best), and he’s quite probably aware that their relationship is not what it once was. And now, while his relationship with the LW is eroding under the stress, Jon’s become another primary partner, and the LW goes off to have weekends with him and comes back glowing and having clearly had an amazing time …

      Being poly (and getting on with Jon) doesn’t mean that he’s not potentially going to have some emotions about that, whether that’s jealousy, or envy, or feeling left out, or fear that maybe he’s slowly losing the LW, or something else. Maybe that’s where the yelling about a divorce is coming from?

      It’s not going to feel great to have the suspicion that your partner is burnt-out and resentful of your needs and just waiting around until you die so they can marry the newer, shinier, cooler person in their life.

      (No, I know that’s not what the LW’s saying about where she’s at, but it’s possible it’s what Wolfie is feeling/afraid of.)

      Could be time for some discussion and processing of feelings.

      • We’ve been doing that.

        He’s very prone to feeling left out. That’s been something we’ve run up against for years with the poly.

        • rydra_wong said:

          We’ve been doing that.

          But it seems from some of your other comments as if the “result” of the discussions/processing is Wolfie saying that if you stay at Jon’s house for more than four weeks, even so you can get the surgery you need, he’ll phone a divorce lawyer. And threatening to kill himself. And also destroying your mutual relationship with another live-in partner (and if that was recent, it seems like another pretty big emotional thing you’ve been dealing with).

          That … does not sound like Wolfie taking responsibility for handling his own emotions, or engaging in relationship discussions in a kind or fair or ethical way.

          From what I gather from poly friends: that ain’t how it’s supposed to be done.

  6. Myth said:

    As a kinky/poly person, I really like how you handled those aspects of this question, Captain. Thank you.

    • JenniferP said:

      I’m learning as I go, thanks to the great people in this community.

    • sayevet said:

      Yes, as a poly person this compassionate and thoughtful response brought tears to my eyes. Thank you Captain!

  7. Ian said:

    LW, you’re basing this on the assumption that he’s going to die in the next five years or so – which, from your letter, sounds pretty reasonable. But human bodies always have the capacity for surprise. Do you have plans for what happens if he lives longer than that? You’re willing to take five years – but what if he has ten years left in him, or fifteen? Could you leave him?

    • Ren said:

      Yes, my grandfather got to the state described above ten years ago, plus prostate cancer, and he’s still very much here. He’s in a carehome now against his will because he ran his primary caregiver into the ground, but he never allowed any investment that would help her because “I’ll be dead by New Years anyway”. OP please consider that the five year time line might change.

    • Yes, I would advise against thinking about his remaining time in a concrete block. Wolfie sounds a lot like my dad, who had congestive heart failure and diabetes (along with a lot of other stuff; we used to joke about how it was crazy that his skin cancer was a totally backburner issue). His health was like a house of cards but it took way longer than anybody expected for it to fall apart. I think you need to think about the possibility of these circumstances continuing indefinitely and decide whether you can handle it or not, and whether you want to stay in the marriage or not. I can’t really put myself in your shoes because a parent/child relationship is worlds different than a marriage, and I also did not have a loving relationship with my father for long before his health got dire, so I can’t really give you any advice on that front other than to not look at his health as a countdown.

    • Ten or fifteen years… I might.

      There’s four foot and ankle surgeries I need so that I can stand and walk with minimal pain and instability. And I can’ t get them with him in this state of health, and he’s not going to get better. When I live with Jon, it’s an option.

      And no, staying with Jon for six weeks while I’m in a non-walking cast is not an option. Alas. If it were I’d have the surgery scheduled.

      • DropTable~DropsMic said:

        I don’t know if you mentioned your own health problems in the letter. It’s understandable why his have been more prominent, but your health needs matter too. It’s worrying me that your caregiving role is meaning you can’t get sugeries you need. This might be a good thing to bring up when you talk to one of the organizations people mentioned that serves caregivers, or to hash out with a therapist or social worker–how can you get your own health needs met?

      • SH said:

        It sounds like even more reason to look into professional caregiving, and insisiting on it. It’s simply not an option for you to let your health fall apart.

      • Ren said:

        If you haven’t already it might be worth talking to your doctors about the potential side effects of delaying surgery, especially if you’re thinking years to do this. I’ve seen people put off surgeries because of the recovery time only to need far more complex surgery, or have much longer recovery times for less benefit. Six weeks now might be three months if it’s left, or four surgeries could be eight. That might not be the case but it’s something to worth considering especially since his care will probably become more complex as time goes on.

        I really hope you’re able to find a solution for all this, having been on both sides of the care scenario I wish you all the best

      • rydra_wong said:

        Even if you don’t have access to the resources for indefinite professional caregiving, could it be worth looking into whether something for six weeks might be possible, so you can get the surgery you need?

        Putting the surgery on hold until after Wolfie’s death leaves you dealing with chronic pain (which is a huge stressor in itself) in the meantime. Five years of that would be bad enough; as people have said, what if it’s ten or fifteen or more?

        (And inevitably a tiny part of your brain will be thinking “God, I wish he’d hurry up and die so I can get the surgery and walk around WITHOUT BEING IN PAIN ALL THE DAMN TIME”, because you’re human, and you don’t need the extra guilt and stress from that.)

      • Theladyherself1971, your health issues add a layer of urgency to finding help I hadn’t realized.

        Jedi hugs.

      • All the more reason not to stay with someone who abuses you.

        What would it look like if you took care of your basic health needs first, and then did whatever else you could AFTER that?

        For starters, you’d get your surgeries and the rehabilitative therapies to recover from them. So make a plan to have that happen. Does it mean you stay with Jon? Or somewhere else? Can you get caregiving services for your recovery? Don’t include taking care of W in this plan. Just make a plan for your basic health needs to be taken care of.

        Then take a look at what that looks like. Figure out how to make it happen. Waiting on W. is not a problem you have to solve. He is capable of pursuing options to get care and help for himself. You just need to solve what has to be done for your health needs.

        Some time in the future, when you have had your surgeries and your stability problems are gone and pain control is not a problematic issue, you can take up doing caregiving for W again if you like. It makes sense to me that you feel bound to do so as a part of what marriage is. But I think you’re currently operating on a twisted and toxic idea of what marriage is since you’re not getting your own basic health needs met.

      • BarlowGirl said:

        I’m saying this in the nicest way possible, but I’m a little blunt, so apologies in advance – what happens to Wolfie if you slip and injure yourself worse and YOU are immobilized? How can you care for someone if you can’t walk? You are a human, and you can also be injured and become sick.

        I think this is all the more reason to start figuring out options suggested here, because you need to care for yourself before someone else. Oxygen masks and all. You deserve that.

        • That’s not blunt, it’s just sensible. LW is not a perpetual motion machine, and neglecting her own health can ultimately make her less able to care for others, not more. “Playing hurt” doesn’t help anyone here.

        • L.Tango said:

          Both of these men have their collars on LW, but it’s her present and future health that’s being kept from her.

          • Aris Merquoni said:

            … except for the fact that she’s the one who collared Jon? (I don’t mean to be rude, but the unconscious assumption that woman==sub gets my goat, even though I know you just misread.)

          • MuddieMae said:

            I think you misread – the only mention of a collar is Jon, who wears LW’s.

          • Redgirl said:

            I got the sense that L. Tango was being metaphorical. While LW is a dom, she’s actually the one being subjugated here, just not in a happy fun kink way.

          • L.Tango said:

            It’s a metaphor.

      • Ouch! That comment is making my healthy feet ache for you! Please, please, please get that surgery! If you don’t, your feet and/or ankles may suddenly give out or break, making you unable to care for Wolfie at all. If he gives you a hard time, tell him that you need to be able to stay mobile to pick up his dropped forks and get his tea/ketchup/whatever.

      • Rhoda said:

        Ah, there’s a reason why the flight attendants tell you to put on your own oxygen mask first in the safety demonstration. You can’t care for anyone at all if you’re falling apart.

    • Temperance said:

      Yep. My husband’s grandmother has been “dying” for … 15 years now?

      • remi said:

        My own grandmother can no longer live alone because she has a lot of health problems and caused severe damage to her apartment building twice in one week in part because of those health issues, and my aunt heroically stepped up to the plate, moving Nan into her home and providing 24 hour care when she started to need it. This was expected to be a tragically short arrangement of maybe one or two years. That was some five or six years ago now and my aunt has not had a day to herself ever since. My aunt and grandmother are both headstrong, independent women, and they both bristle at the lack of independence they are both experiencing, my grandmother through her health issues and my aunt through my grandmother’s 24-hour care needs as well as the daily headbutting and arguments that happen when two dominant, exhausted personalities clash. The situaton is not ideal, but it is the only one really available (our adventures in home care are too much to go into here); still, had my aunt realized going into it that it would last as long as it did, she might have done things a little differently, like doing that One Big Project or taking that trip to do International Activism Goals and essentially knocking a few things off the bucket list before she committed herself to a decade or more of being essentially housebound. People can die and live unexpectedly.

        • whingedrinking said:

          My grandmother had a heart attack in 2007 at the age of 90. Obviously no one expected her to survive it; my mother and her siblings all booked it out to her hometown, and I was told to be ready to board a plane with appropriately solemn clothes at a moment’s notice.
          She lived another five years. Her eventual cause of death was bowel cancer and she could even have lived a bit longer if she’d decided to continue treatment. So basically, yeah, don’t bank on people dying even when it seems certain.

      • L.Tango said:

        I recommend a watching of the movie “Moonstruck.” 🙂

    • Agree with all the others re the timeline. Two of my older relatives were sick as could be, with everything imaginable, yet they lived to age 90. Your husband really COULD have another 30 years of retirement. Maybe not happy retirement, but still hanging on.

      I also agree that caregiver burnout is a thing. Please find ways to care for yourself, too.

  8. FarmerStina said:

    Great advice, Captain!!!!!!!!

    • Yes, the reason I wrote in here is that the Captain and all of you all are so perceptive, and will give me new and better perspectives on the situation. I’m grateful to everyone.

  9. I noticed that it seems that 2015 and 2016 contained a lot of big moments for the three of you. A massive life changing heart op, an alcohol problem, a kind of marriage proposal, the change in how your time is spent together in terms of how Jon and Wolfie sharing weekends… No wonder you are all exhausted. Perhaps you could view taking time for yourself as an act of love for Wolfie and Jon – ‘protecting the property’ as it were. You are caregiver, wife, dominant, lover, that’s a lot to give out without having space to replenish your own reserves.

    Maybe the frustration here is that what Wolfie isn’t well enough to give and Jon isn’t in a position to give you yet is actually the thing you need to grant yourself; nurturing. What do you hope for in the next five years? What moves you now? What nourishes you?

    I am a caregiver for my dominant life partner and it’s so *much* more crucial that I take my own needs seriously than if my partner were healthy or vanilla. It’s a difficult thing to get my head around but our lives are much happier when I make those uncomfortable calls to look after my wellbeing.

    I wish you all love and comfort going forward. My parent is a nurse and she talks about the concept of a ‘good death.’ A good death is as unique as each person and doesn’t mean basements necessarily are tidy or wayward sons come home. But it is the moment when people trust that it’s ok to be facing death and to feel all the enormity of that. I wish Wolfie all the love in the world when he gets to that time.

    • Thank you so much. I want a good death for him.

      It’s very difficult to do self-care and nurturing when there’s little money to do it with, and when Wolfie’s constantly all up in my business, but I do what I can. And I’ll try to do more. I can’t see a therapist til I get my insurance straightened out in July, but I have seeing someone as a priority.

      • Stop rewarding him for being all up in your business.

        Look, toddlers are easily trained to behave a million times better than this guy. It’s not hard to teach a toddler that when the work timer is running, Mommy is no available, but she’ll happily give some attention when it ends.

        Since he’s acting like a toddler in a tantrum, treat him like one. Stop rewarding the bad behavior. Only reward good behavior.

      • L.Tango said:

        LW, what would a pie graph that includes your Household Expenses, Wolfies Hobbies, Wolfies Motorcycle and The Lady’s Medical Needs look like? Does it seem appropriate to you? Do you have an idea of what the costs to treat your medical needs as they escalate, might be?

        For months, I tried to walk on a pressure fracture that a doctor mansplained was not there, until I couldn’t bear the pain any longer and got it operated on. It had been made worse. I was pushing the bone apart.

        The comments on a caregiver burning out and the one where the caregiver died, leaving the sicker person vulnerable, really shook me up. There’s a reason the PT people and doctors are often in glowing good health. They know the job requires it. They put on their own oxygen mask first.

        I feel really glad that you wrote in, and are seeing all the comments.

      • L.Tango said:

        You may get good results from calling now and describing your situation. Maybe the therapist has a sliding-scale group you can join, or knows of some crisis fund through a hospital or other source… This is where 211 can be really useful, too. There are call-in crisis lines. I’ve used them and just talking to someone (who didn’t mind a 2AM call!) was so helpful to my mental state.

        In case you’ve got Reasons Why Thats Not For You- I learned that many get their funding based on how many calls they are getting. *They need you to call*, so they can help others!

      • I’ve been there, and you know what? Good death, bad death, it honestly doesn’t matter. Dead is dead–for him. For you, what would be a good Wolfie’s death?

        I can tell you what it look like to me: I want his death to not leave you destitute facing eviction in a hoarded-up house you can’t clean because your foot issues are so bad four surgeries is now sixteen. Or worse. I want his death to leave you in a place where you are free to turn the rest of your life into something good, something for you. I want you to be able to mourn and move forward. You have, the gods willing, half a lifetime ahead of you, and you need to be thinking about that and making plans for that–it’s not going to be the end of the world when he dies. It’s going to be the end of one phase for you and the beginning of another.

        I have had a whole second life since my husband died when I was 32, and it has been GLORIOUS. Beautiful and fun and active and full of love and laughter and travel and friendship and yoga and a new career and excitement and a new man who treats me like a queen. A lot of that is because of the lessons I learnt the hard way in my first life. There have been hard times. I lost friendships and pets and a lot of other things–I even lost hope for a while–but the thing I never lost was myself. I was there the whole time–I just forgot about myself for a while.

        • L.Tango said:

          I’be been taking in your story for some time, Novel, and it’s thrilling to read how well you’ve thrived after such a hard time. Thank you so much for sharing this journey! (Where’s the seasonal moniker?) 🙂

          • Thanks–that’s very kind of you! 🙂

            My seasonal name would probably be be Pollen deSneeze and that’s just depressing. 😉

  10. Since LW is in the US (from what I have read here) I would also like to recommend calling the toll-free national 211 system or visit 211.org to find a list of resources in your area. My mother-in-law developed dementia, and it was really hard to navigate the legal and social issues while she was still competent enough to clean herself and wash and take care of her cat, but it was getting to the point where she wasn’t taking her diabetes medication or eating regularly. Her memory loss would get worse at night, so she’d often wander, and it was really scary because she still had access to her CAR. Finally we had to take her car keys and her wallet because she was trying to drive and kept getting money out at ATMs and it would just “disappear.” And my husband was in a lot of denial about it, and didn’t know where to start. The folks at 211 helped us a lot for getting her set up with living/care situations and helping find a place that would take a dementia patient with her cat companion (who has FIV and could not be rehomed).

    It’s awkward navigating a changing adult relationship with another person, but my MIL is doing MUCH better now that she’s on her meds and has a safe place to be. I hope that LW can find a balance that works for both herself and her family.

  11. VG said:

    LW, I feel for you. My late husband had congestive heart failure, and in the last year or two of his life, he was tough to deal with in some of the same ways (irritable, asking me to do everything for him, needing to have me constantly in sight), so I have been there and done that, and it’s hard and draining and frustrating.

    That said, you should also know that CHF itself can cause changes in people’s behavior and personality, specifically because their brains are low on oxygen and that causes irritability, irrationality, etc. Throw in a cocktail of different medications interacting in all sorts of ways, and the depression that comes from knowing you’re going to die soon, and most CHF patients are not their best selves. This doesn’t mean in any way that you should give up and become the prisoner of your partner’s whims because “he’s sick,” just know that he probably doesn’t mean to be as dickish as he is, or even realize he’s being a dick, the way a healthier person would. Peace and good luck to both of you (and Jon too) as you work through all this.

    • wasabigrrl said:

      That’s an incredibly important point. My dad died of CHF, but it was such a fast decline after the diagnosis that I didn’t really process how it was affecting him. The most marked thing was how forgetful he became. He’d been a carpenter all his life, but he told me he’d forgot how to cut molding at a 45 degree angle to go around a door.

    • I had suspected that such might be the case, but of course as you know, the dickishness still hurts.

  12. Dia said:

    As someone who is the one doing the asking their spouse for help, I really appreciate the Minding the Ps and Qs section of the reply, from both the perspective of extending understanding to cared-for people and also the perspective of how caregivers deserve gratitude and to not have everything treated as an emergency.

    • Same here. When I realized the help of caregivers was a thing I was going to be needing, I went looking online (life is so much easier with the internet) to read up on caregiver perspectives. What makes a good client? What makes a bad one? What are little things that make a difference for the positive or negative?

      A friend of mine looks after Alzheimers patients, and she’s remarkable for her lack of fear of the violent ones. Her favorite trick is that when one is raging and likely to harm someone, she’ll walk up to them beaming, holding her arms out, and ask for a hug. She’s never had it not work. And she acts like SHE’S the privileged one to have them smile and decide to hug her.

      She treasures moments of them showing kindness or giving a big smile. All caregivers seem to treasure that. And how simple is that? I can certainly give a big smile and warm thanks for care. Why on earth not?

      • Your friend sounds amazing. My grandmother was diagnosed with Alzheimers about 6 years ago and my dad’s recently started getting calls about her hitting and biting. She was nice to a fault pre-diagnosis so it’s mind-boggling, but I really feel for her caregivers.

        • Raptor said:

          My great grandpa was like that. My mom said – “Well, if you woke up in a strange room and a strange man was taking off your clothing, and you had no idea why or how to ask him to stop.”

          That freaked me out. I’m not sure if it’s really like that once your mind is at that point, but I have a lot more sympathy now.

          • L.Tango said:

            I spent most of a summer in a nursing home after major surgeries. The woman across the hall from me was bedridden and diapered, and every time they’d change her, she screamed in terror. I could hear her village being attacked, over and over again. Hesrtbreaking.

  13. SmiteTheeWithApples said:

    True story time. My grandad had Alzheimer’s and my uncle was his primary carer. It was a 24/7 job and my uncle did not care for himself. A few years ago my uncle was found dead on the floor (4 days after he had died) and my grandad trapped dying in his chair (he died the next day). My uncle had a heart attack in his mid fifties and it killed both of them.

    It is a very different situation to your own but LW, please please please take care of yourself. You are important and your health and wellbeing is important. Yes you love him and you want to do what you can for him while he is here. But running yourself into the ground is not helping him.

    • Penelope Widdowson-Bonefat said:

      Oh my goodness, that sounds so hard for everyone, I’m so sorry for your loss.

      And I can back this up: my grandfather spent twenty years dying and unable to meaningfully care for himself. My grandmother had been his primary caregiver, but my uncle and mom and I have done not-insignificant parts, and we all have had to set up significant boundaries while being as generous and kind as we can. It’s really hard. But it’s have boundaries or turn into smoking lumps of human-shaped carbon. It took us a while to learn it. You may have to learn it for yourself, but I can’t imagine a way of being a caregiver that doesn’t force you to make that choice.

      • EH said:

        I’m so sorry for both of your losses. I’m piping up to say: my grandmother lost her speech and then her mind to Alzheimer’s, but it still took her nearly a decade more to die physically. This can be really rough and take way longer than you think (her sister died less than a year after being diagnosed).

        A hopefully-helpful-to-someone suggestion: Masons/Freemasons often have some kind of widows and orphans fund or home where any immediate family member of a Mason is eligible for benefits. My grandfather was a Mason, and he and grandma moved into a Masonic Home near my parents for their last half-dozen years. I’m actually qualified for it myself because my Dad is a Mason. If there are any Masons in the family (and it may take digging, some Masons are a bit quiet about it), it’s worth reaching out to see if they can help. Part of the point of fraternal organizations is taking care of members and their families.

        • Parenthetically said:

          Seconding. Elks, Kiwanis, Rotary, Lions, Optimists, DeMolay too.

    • BigDogLittleCat said:

      Holy sweet jesus, that’s heartbreaking and terrifying.

    • My gosh, that’s so sad! I read something recently that said caregivers often pass away before their charges, which really serves to highlight just how taxing (mentally, emotionally, AND physically!) taking care of someone full time is. I am so sorry for your loss!

  14. Dear LW,

    I hope you will listen to the Captain’s advice. I think it’s really good. I have a few thoughts on relatives near death and care-giving.
    – Hire help
    You may not need 24/7 help, but you could probably use at least two or three full shifts per week. It will be good for both of you if there’s someone who cooks and cleans. I suspect having full-time, or even 24 hour care, on the weekends will help a lot.
    – The hired help isn’t enough
    Well, it might be, but you’ll still get tired and burned out
    – The kids won’t be as useful as everyone thinks
    I say this as one of the kids. My father had a right side of the brain stroke at 56. The damage was extensive (paralysis, cognitive loss, pain and more, much more). He lived another 17 years.
    My mother had full time help. She wanted more from my brother and me than she got. One reason my brother and I (especially I) weren’t there enough was that we had our own lives. And another part was that my mother needed to retain complete control over everything. The end result was that the burden on her was pretty stiff.
    – Don’t expect he’ll die within five years, and don’t plan as if your situation is temporary
    As I said above, my father lived 17 years after a stroke. Those 17 years included pneumonia, gall bladder surgery, and other conditions that were expected to lead to death.
    More like Wolfie, my great-uncle survived close to 40 years of emphysema, heart disease, and strokes. Every winter his doctors were convinced that pneumonia would kill him. It didn’t.

    I wish I could sound cheerful, but I’m not. Your situation is really rough.

    Jedi hugs if you want them

    • Thank you. The problem is that he’s not quite disabled enough for me to access caregiving help of the official paid sort. He can go make himself a sandwich. He can dress himself, mostly. He can handle showering by himself.

      But left to himself he won’t pick up or clean, he won’t deal with the litterboxes, and he won’t do the laundry, because he really can’t without a lot of pain and exacerbation.

      I’m not as messed up as he is. So it all falls on me. Part of the relaxation of going to Jon’s is that he has a dishwasher. And if I hurt too bad to cook, we can go out. Or Jon can cook what I had planned.

      • That is tough. I’m so sorry.

        I am going to make two suggestions
        1- Check back with the social workers from his hospitalizations, there may be some subsidized help you weren’t aware of
        2- Throw money at the problems. Buy a dishwasher. Hire a cleaner.

        The situation where you jump all the time isn’t tenable.

        • L.Tango said:

          LW, a more practical suggestion- people remodel kitchens and baths and toss perfectly good, working appliances and sinks. Check with Habitat for Humanity and Goodwill, and post ads on Craigslist.

          • That’s brilliant!

          • slythwolf said:

            It might also be worth it to look into those little plug-in countertop dishwashers, I’m not sure how much those cost but it would also save ripping out part of the kitchen cabinetry.

      • If there’s no money at all, I’m stuck. My father got social security for his disability – so his pension could go for home care. I’m presuming you’ve looked into the stuff Wolfie is eligible for. I’m just hoping there’s more.

      • Well then he is fit to handle a weekend alone. And he is fit enough to stop being abusive.

        I’m firmly of the opinion that you don’t need to do caregiving for someone who abuses you. You can simply opt out. If they’re being abusive, they must not want help all that much. If they really want help, they can manage not being abusive to the person who provides it.

        (Obvious exception for situations like a friend of mine who does private caregiving for Alzheimers patients — she regularly has gouges clawed in her arms but cheerfully says it’s not the patient’s fault.)

        This guy is capable of not abusing you, but he likes abusing you and what abusing you gets him. All the health stuff is just a red herring. His free choice and preference to abuse you is the problem you need to deal with.

        If you’re not willing to just up and leave him, I’d treat him like a toddler having tantrums. Requests not made politely get ignored. Tantrums, including stunts like faking urgency, get dealt with by time-outs.

        You’re very devoted to rewarding his bad behavior. Stop doing that. Only reward positive behavior.

      • BarlowGirl said:

        There is one somewhat cheaper way of throwing money at a problem that you should have no shame about – paper plates, plastic utensils, tin foil/foil cookware. Yes, there’s still some cost, but that might be easier to find in the budget than finding a dishwasher (I know even used they can be a big cost).

        It’s not everything, I realize, but it’s something.

        • After my cancer surgery, I realized that one of the best things I’d done for myself was the durable plastic spoons. I could rinse them if I was feeling up to it, or I could throw them out if I was not.

          • BarlowGirl said:

            Heck yeah. I bought like five dollars of plastic cutlery after I had my wisdom tooth removal and that alone helped so much. Sometimes it’s just not worth washing dishes, and that’s okay.

      • Cyberwulf said:

        LW, I think it is time for your junior high son to learn how to do the laundry. And wash dishes. They don’t take all day and it’ll take some of the load off you.

        • Bartleby the Caregiver (aka Bad Caregiver) said:

          Both of her kids are grown and living elsewhere.

          • Cyberwulf said:

            LW said in the comments that her younger son is a junior in high school.

          • B. said:

            No, she said the younger one is a junior in high-school. Didn’t mention if he lived at home with them or on his own, though.

          • Bartleby the Caregiver (aka Bad Caregiver) said:

            I saw “junior in high school” later in the comments. In the original post, she explicitly mentioned that both kids were out of the house. Younger one in boarding school? Or she meant junior in college?

          • BarlowGirl said:

            Junior high son does not live in the house.

  15. wasabigrrl said:

    LW, I don’t have much experience that speaks to any of your letter except this part: “Get me a glass of tea. Get me the ketchup. Pick up the fork I dropped. Help me on with my shoes. Take my socks off.”

    My partner is arthritic and mobility-impaired. For a while I would drop everything and respond to all requests for help, but I started to resent what felt like constant interruptions, especially for minor things like dropped socks. After negotiation, my partner learned to rephrase his non-urgent calls as:

    – Is this a good time to interrupt?
    – When you get done with what you’re doing, can you come in here and help me with a thing?
    – Next time you’re passing through, can you bring me some _____?

    He even realized that he was sometimes just calling for me out of habit, and started answering himself with:

    – Never mind, I can get it myself – I need to stretch my leg anyway.
    – Never mind, you’re busy/relaxing. It’s not that crucial.

    I don’t know if your husband is actually as demanding as you write here, or if you’re just venting your frustrations (I remember feeling similarly stabby). I don’t know if he’s being a self-absorbed dick, or if he’s acting out of panic, despair, and bitterness at his diagnosis. My partner was dealing with arthritis, not a potentially fatal diagnosis. But you don’t need to be at his beck and call, and he doesn’t need his sense of helplessness reinforced.

    Chronic illness and disability usually mean “a new normal” and learning new strategies for daily tasks. This would be the time to consult a self-help book for COPD caregivers, an occupational therapist, or a therapist-therapist. Maybe he can use a grabby claw-hand to pick up his dropped objects himself. Maybe you can negotiate no more than three interruptions per evening for non-emergencies. Maybe you can put ketchup, a full tea pitcher, and extra forks on the table while he’s fixing his plate, so that neither of you has to get up during your meal. Maybe he can stop and assess whether he needs to do the thing himself, even if it takes half an hour to do what used to take four minutes and you could do it for him faster.

    Regardless, I wish you both the best.

    • Dia said:

      *nod* Great advice. 🙂

      Sometimes I’ll ask my husband how long he’d like to go before being interrupted if at all possible, so I can wait until that time unless there is a true emergency. Or sometimes I’ll ask him to use our phone intercoms to let me know when he is on a break from whatever he is doing, to see if I need something then, as that way instead of being interrupted he can choose the time that works better. There has definitely been a feeling he’s had of being “on call” all the time that it has been helpful to address, and I think having things be lower-stress and less interruption can feel better to him even if it is the same amount of work (although as you say it can be very helpful to also work on eliminating work that isn’t necessary).

    • cats and caterpillars said:

      Yes, I’ve had similar negotiation with my DH about how much concentration a particular task (eg aligning bike parts) takes and how much time it requires; can I do stuff myself or is it safer for him to stop what he’s doing and help me – I’m a lot less mobile than him… although the coin sometimes flips when his heart disease wears him down or he’s injured himself (cyclist); then I do my best to take care of him the way he does for me.

      ANYWAY​… LW, have a look at this link – http://www.compassionfatigue.org/ I think I found them from a previous CA post? You’ll possibly recognise the symptoms in yourself, and if you are in the US there’s a number of links to help sources. As a recipient of caregiving I salute you for the work you do for your Wolfie and I hope he does truly appreciate you. Best of luck and jedi hugs if you want them.

      • Thanks for the link, I’ll definitely check it out.

    • V for Valski said:

      “He doesn’t need his sense of helplessness reinforced.”

      Thank you for teaching me that! It’ll make me a better friend to someone that I struggle with.

  16. Whimsy and Forest Fires said:

    This is something of a tangent, but Captain, as a disabled person, I want to thank you so much for this bit:

    Being sick is exhausting, and Wolfie probably has little energy left over for asking nicely when he needs something. There are times when a terse “Come help me!” has an extra layer of “Being vulnerable and asking for help sucks, and I am trusting you to come help me without needing a lot of negotiation or a performance of gratitude on my part.”

    I was able-bodied for most of my life, but have spent the last several years as a seriously ill wheelchair user who needs a lot of help with basic tasks. I’ve had a lot of frustration trying to communicate to friends and family that (a) I am very, very tired all the time and also very, very angry all the time at my body for doing this to me, (b) I am forced to deal with a lot of discrimination, rudeness, and general crappiness from strangers/businesses/etc. basically every time I go out in public by virtue of being a wheelchair user in a deeply ableist society, (c) that makes me feel like I’m supposed to be ashamed of being disabled, which just makes me more angry about the whole situation, and (d) when my friends and family insist that I thank them profusely for every single thing they ever help me with, that reinforces the idea that my existence as a disabled person is a shameful thing I need to apologize for, which makes me feel awful – and since I’m already very worn-down and very angry about needing to ask for help in the first place, it’s often a struggle not to snap at them when they get irritated because I only said “Thanks!” and not something more like “I am so very sorry that I had to ask you if you could please get something for me from that room with the doorway too narrow for my wheelchair to fit through. That was a truly amazing sacrifice on your part. Please allow me to grovel in gratitude for your selfless act of kindness towards a poor, pathetic cripple like me.”

    That’s certainly not to say that I shouldn’t be polite (I do pretty consistently say “please” and “thank you” or variations thereof), or that it would be inappropriate for them to ask for more appreciation if they were feeling taken for granted, to be clear! It’s just awfully nice to see someone else recognize that it feels pretty miserable and humiliating to have to keep asking for help with things you used to be able to do just fine on your own, because it seems like no one in my life is able to understand that at all, no matter how many times I try to explain it. (Sometimes I daydream about having the sort of friends or family who would just, say, get things they know I need down from high shelves without me having to ask in the first place, let alone having to say, “I’m so sorry to be a bother, but could you possibly get that thing from the shelf I can’t reach, please? I’d appreciate it so much if you did!” every. single. time. Sigh.)

    Anyway, sorry for the tangent. Just…thanks, seriously. It’s nice to know that it’s at least possible for other people to understand, even if the people in my life don’t.

    • Mel R said:

      Jedi hugs if you want them, that sucks. The thing that springs to mind while reading your comment for me is, who is putting things you need up on shelves you can’t reach and in rooms you can’t go into? It sounds like some rearranging or redesign would make your life a lot more convenient and reduce the need to ask your family for help.

      …and if it’s the people who resent being asked for help who are putting things in places you can’t reach and making it necessary for you to ask in the first bloody place, they’re getting a Jedi Gibbs-slap from me right now!

    • V for Valski said:

      I use a cane and yeah, all of what you said. Also deal with older people looking at me as if I’m faking an injury; the partner of my former best friend inviting me for dinner and then TELLING me I’m faking, and salesclerks seeing me juggle with purse, cane and bulky stuff I want to buy, letting me know they have me under shoplifting surveillance. It takes two days to recover from the stress of a single day of going out, and demanding my space. I don’t leave my house enough to be healthy. And yeah, I was blind to this kind of abuse before my accident.

      If I wasn’t alone, I wonder how much of this I’d be trying to push on someone in my home? Being needy is a luxury that I can’t imagine.

    • It’s not that I mind doing it when it needs to be done. It’s more along the lines of, “Did it have to be done NOW when I just finally got to sit down and I am rolling an eight not to burst into tears because my feet hurt so damn bad?”

      • Cyberwulf said:

        LW, you cannot afford to spend years crying in pain when there’s a medical solution. That means Wolfie’s family or your family or Jon or friends will have to help out for the few weeks you’re in a cast. If the thought of Wolfie being pissed about you needing care and attention is what’s stopping you from asking, then you have a big problem.

        • JenniferP said:

          Well said. My heart is breaking for you, Lady. This is unsustainable and about so much more than the odd weekend away.

      • The two of you are enacting a form of a gendered dance that so many male/female couples do. Virginia Woolf wrote about it in A Room of One’s Own. In this dance, women are treated as perpetually interruptible — anything they are doing must give way.

        And you’re doing a more severe form of the dance that says you are slacking off every time you spend a moment not being occupied in providing care FOR HIM, even if you are providing necessary care for you (sitting down).

        Start putting your pain management first. Speaking as someone who has been in severe pain without a break for over three years, I know this is a hard, hard adjustment to make, but make it the primary goal of every single day that your pain shall never cross an 8 on the pain scale. Do whatever you have to in order to make that happen. Then do what you can with whatever time and energy is left.

        If this means W. does not waited on every second, it’s fine, he can do enough for himself to manage.

        If this means he really does need more care, or thinks he does, he can work that problem. He can work on pursuing some options.

        Right now he’s in a downward spiral of clamping himself ever more tightly to you and binding you in ever-tighter chains, because to him that looks like his best/easiest option. He can take some energy from hounding you to work on other options.

        • L.Tango said:

          Reaching down to pick up a sock is the same motion used from sitting on a motorcycle and stretching to pivoting out the kickstart lever. Unless it’s electric start.
          Twisting the throttle is the same motion that opens a faucet to get a drink or wash a dish. So I call shenanagins.

          I really hate going to Al-Anon, the 12-step group for people dealing with alcoholics. Hate it. I will sit and take their inventory and fault-find. But, every time I’ve gone, I’ve heard something I can use in my own life. And hearing my families’ tale out of a stranger’s mouth really strips the shame out of the secret-keeping we’d done as I was growing up.

          Plus, it’s free. I’ve seen members giving other people rides to get there.

          • BarlowGirl said:

            Okay, I can’t fix the “putting on socks” one (although I think there is a thing for that?) but you can get grabber arms at dollar stores and targets, also. I have a friend who got one at the dollar tree because she couldn’t reach the bottom of her washing machine when she was pregnant (she’s 4’11” and her baby was like 10 pounds).

            Does he WANT to find things like that that could help, or does he just want you to do it?

          • I hear that barbecue tongs make good grabbers as well; they’re a good length for reaching the floor from a chair or wheelchair. And hemostats work well for fine-motor pickups over short distances; they grip good and hard.

          • BarlowGirl said:

            @Ice and Indigo (hope i’m not messing up the nesting here) I should have thought of that – I can speak from experience they work pretty well! I keep a long pair around to get things off high shelves.

      • What would happen if you just let yourself burst into tears? That is, let him see the honest, involuntary reaction you’re having to the way he’s treating you?

          • Turtle Candle said:

            Yes, it’s a somewhat chancy move. Some people will see you burst into tears and go, “Oh my god, I didn’t realize how badly you were hurting, I’m so sorry.” And then try to fix it. Someone who genuinely cares about your wellbeing but who doesn’t realize how badly off you are will do that.

            But sometimes it lures you into a really horrible horrible horrible game called “I can top that.” If the other person is getting something out of always being The One Who Is Cared For, or The Sickest One, or even just The Center of Attention, they may respond to honest tears with tears of their own, but louder and longer–or with wailing or screaming–or with threats, either against themselves or you or your/their possessions or the relationship. I saw this in a couple who I was briefly roommates with; one of them was objectively more unwell, but the other did sometimes need support. One day the more healthy one came home from work with a migraine (she often had to go to work with a migraine, because she was the only one who was employed of the two of them, and she had limited sick time), and as soon as she sat down her partner said, without looking up from the Playstation, “Oh, you have to go to the post office. I forgot to tell you, I have a package there, and it’ll be sent back if we don’t get it today.”

            Well, the one with the migraine who had just come home from work burst into tears. I don’t think it was calculated. I think she was just exhausted, in great pain, and the last thing she wanted was to immediately get up again and take the bus to the post office and lug a box back (especially since our post office would hold boxes for at least five business days, so the only way to be at ‘you must go out now’ was if she hadn’t bothered to mention it for almost a week). But within a minute of her starting to cry, her partner started to wail, at the top of her lungs, and scream “I can see what a burden I am to you” and “I guess I should just go kill myself so you don’t have to deal with this,” and on and on, and migraine-having roommate not only had to go out and get the box (I mean, I took her so she didn’t have to take the bus, but it still wasn’t fun for her) but had to spend the entire evening soothing and hugging and petting her partner and making her macaroni and cheese exactly the way she wanted it and so on and so forth.

            In a reasonably healthy relationship–even a reasonably healthy relationship that’s going through a rocky period–showing your genuine pain can be a very useful thing, to get issues out in the open. But in an unhealthy relationship… I’m afraid it’s often leverage for manipulation, or threats. :-/

          • Or, like my late husband, they might just sit there and watch you sob miserably.

          • I partly asked because Wolfie keeps threatening divorce, and several commenters here suggest that it might be worth seriously considering. In which case, how he reacted to tears of physical pain would be useful information about what the odds of improving this situation without leaving might be.

    • Bartleby the Caregiver (aka Bad Caregiver) said:

      @Whimsy and Forest Fires: I’m sorry that people got irritated with you for only saying “Thanks!” (which seems like a perfectly reasonable thank-you to me). My read was that LW is frustrated because her husband won’t express the kind of appreciation for 24-hour care that most people offer when somebody passes them the salt.

  17. B. said:

    Hi, LW!

    I noticed you always say “his sons”, never “my sons” or “our sons”. If you don’t mind me asking: is that just a turn of phrase or is there something going on between y’all?

    Because if you’re not on good terms with them, maybe it would be a good idea to disregard the bit about going to them for help in the Cap’s answer. You need help, but not from people you wouldn’t ordinarily trust.

    I wish you and your partners all the best.

    • RabbitRabbit said:

      He’s 10 years older, it could be that he had them with another woman previously, and did not have primary custody. But yes, get people who are Team You on your side.

    • No, they’re ours. But there’s a lot of tension between him and his eldest son, because Wolfie was willing to drop everything and go see his dad and do this and do that, even when it was inconvenient. Now he gets annoyed because eldest isn’t doing anything to bring in an income, and he can’t just call him up and say, “Hey, come over, I want to do X project,” he has to call him and say, “What are you doing Saturday? Could you come over and help me get the lathe running?”

      I don’t think Eldest is wrong on this one. (wry grin)

      • B. said:

        Oh, cool, thank you for the clarification! And yeah, Eldest Son sounds like he keeps good boundaries around requests and the politeness thereof 🙂

    • Temperance said:

      Actually, she does say that she had her sons with him. I think it’s really just a turn of phrase.

      • TO_Ont said:

        I took it as emphasising that she was asking them not because they’re her sons and she hoped they’d help her, rather she was thinking of it because they’re his sons and she hoped they’d help _him_… Not that both aren’t true, just that that was the relationship she wanted to emphasize.

  18. Convallaria majalis said:

    I hope that what I am writing will not sound too depressing, but what I am about to write comes from my own experience and I have had to deal with a lot of loss during a few past years.

    Even if Wolfie does live for decades it is apparent that he is very sick and his health is deteriorating. I wonder if LW’s sons know about the true nature of their father’s condition? If Wolfie has spoken with them he has probably assured them that he is just fine, that there is no need to worry – except, in truth, there is. I am in my 40’s now and the older I get, the more my connections to my family seem to matter. As far as I know, this is very common. The LW did not tell how old their sons are, but perhaps they are in that age when people are still young and they do not think about their parents’ mortality.

    If I could go back and spend more time with my mother, I would do that – never mind that she was a demanding and sometimes difficult woman. Is it possible that in the future the sons will also think like this? Will they wish they would have spent more time with their father, heard all his stories until they know them by heart? Now they still have a chance to do that, it is not too late. I wonder whether the LW could explain the situation to her sons and whether they could all gather together, just to spend time together, to get Wolfie in the mood of telling stories – and if cleaning the basement still bothers LW (and/or Wolfie?), the sons could possibly help.

    The dream about cleaning up the basement is very familiar to me. My grandfather was a really gentle and good man. He was quiet, but he spent his time observing what other people did and he did his best to help them in his own way. He loved machines, so that was how he showed his love: he ordered or built machines. When he saw how much time doing laundry took from my grandmother he built her a washing machine after seeing a picture of one in a magazine. For a man like that his garage was very important. He usually kept it very clean and orderly – until he suddenly became very ill and then died. Like The Captain said we all go unfinished and leave things behind. I wonder if cleaning the basement is actually more of a symbol of getting everything done? On his deathbed my grandfather wished he had cleaned up his garage. Last summer my spouse suddenly began doing it and I joined him – and seeing all those familiar tools brought happy memories and comfort. I am probably not the only human being who finds solace in fulfilling the wishes of a late family member. Could LW think about what the thought about cleaning the basement really means? Why is it important?

    I heartily concur to The Captain’s wise advice. Dear LW, take care of yourself! You clearly have many good things going on, even though life right now is very hard.

    • “I wonder if LW’s sons know about the true nature of their father’s condition? If Wolfie has spoken with them he has probably assured them that he is just fine, that there is no need to worry – except, in truth, there is”

      I went through this with my father. Intellectually, I knew that his cancer was inevitably terminal. But whenever I called he was “fine, feeling great, new treatment, blah blah” And of course some part of us always believes our parents are immortal, right?

      I last spoke to him on Father’s Day 2013. He was feeling fine, just great, no problems. A week later I woke up to a message from my sister saying he was in the hospital again and it was bad. Two hours later he was gone.

    • I wonder if cleaning the basement is actually more of a symbol of getting everything done?

      My husband’s first wife, who died of cancer a few years ago, refused to make a will or make medical end of life decisions, even as her friends and daughters were begging her to do so. Her attitude was that if she made a will, she would be admitting she was going to die.

      We all die. She just made life more complicated for her children.

      • My dear partner had to take care of his father’s ENORMOUS stash of (mostly) crap. Now he’s working his way through many of his own belongings — donating what’s in good shape, ditching what isn’t, identifying photos, et al. — so that he won’t stick his own kids with the task.

        Show of hands: How many readers have wills/medical directives in place? If not, please get these things done as soon as you can. Oh, and clean our your basements, crawlspaces, attics or wherever the detritus has come to rest. Your heirs will thank you.

  19. LNS said:

    Wolfie’s PCP may be a great resource for finding resources like visiting nurses, PT/OT evaluations & services, assistive devices that may help Wolfie be more independent, and even respite services for LW.

    I also agree w calling on your respective support networks, LW. Years ago I had a friend who, in part bc of chronic, disabling illness that was painful & led to social isolation, had become severely depressed. She was afraid of leaning too hard on her friends & driving ppl away. A group of her friends got together w her, identified her needs for a month or so at a time (rides to MD, someone to sleep over on XYZ night so she wasn’t alone, someone who could agree to be on call/respond in the middle of the night if she had any kind of crisis & needed support, etc). We would schedule that shit, literally wrote it out on a calendar. It ended up being really great in multiple ways: each support person, by default, had the reassurance that they were not solely responsible for keeping our friend afloat. We scheduled meetings to reassess our friend’s needs & whether or not our approach was meeting them. We built in support for specific needs (ride to doc at this time on this day) and also an on-call person to help w unexpected needs.

    Bc we discussed this stuff a) in advance and b) as a care-giving group, it was easier for each of us to set boundaries/respect our own limitations while also assuaging our guilt for having boundaries (and her guilt for having needs).

    An open approach of asking for help will also help LW’s sons (and hopefully also Wolfie) understand exactly how much work/responsibility LW is faced with on a daily basis.

  20. B said:

    “King baby” is a term from Recovery, no? I thought it was interesting Jon was the one who went to addiction treatment but LW used it for Wolfie.

    LW, captain has excellent advise as always; you sound burned out and understandably so. You need to make things OK for you too, and not put it off because the future is uncertain. CHF is notoriously hard to prognosticate and people often live many years. Plan for the worst but hope for the best; get all critical legal matters squared away but also plan for the scenario where he lives many years. Try to pace yourself to handle that and maybe find a way to enjoy his company again? Alternate caregivers and respite facilities* are a must!
    *I did a palliative care rotation at a VA that could schedule taking care of a veteran with serious health problems for a weekend every few months for the family to take a break. I don’t know if Wolfie is a vet or if there are non-VA options but I’d expect there are.

    • Jiggs said:

      It’s also a possible reference to Hark! A Vagrant author Kate Beaton’s book of the same name. King Baby is a character (and a baby) that orders his parents around like a tiny country-ruler, but is beloved.

    • I do a lot of reading and studying to learn how to handle things around me.

      Wolfie’s also an alcoholic, but sober. He was a regular binge drinker in his youth, and he has a massive untreated food addiction thanks to his Darth Vader mother. No kidding, she would tell him what a fat pig he was, and then offer him some pie, and get angry if he didn’t eat. So anything to do with food is difficult. Including eating right for diabetes, CHF or losing weight so he’d just feel better, period.

      • B said:

        I was wondering if it was because you felt Jon had gotten a handle on their addiction/ addictive habits but Wolfie still had untreated issues, “dry drunk” as it were.
        Food is difficult even without all that extra baggage with his mom giving super mixed messages @-@

      • Rube N00b said:

        You may want to swing over to chumplady.com. While their crowd are largely people in monogamous relationships who discover infidelity, what they know about preemptive lawyering up and taking stock in assets within the marriage (before the spouse hides or liquidates them) is spot-on. Also some white-hot venting in a safe space, which I’m sure is therapeutic.

        Next time Wolfie makes that divorce threat could be a time when you summon your well-buried curiosity and a level tone, and counter with, “You’ve brought up ending our marriage several times now. Are you saying you’d like to change our current relationship, or split up our assets and end it entirely? Because, with the kids gone and our health issues increasing, I agree that this may be a good time to cash out of this house. It’s too big for us now and not set up for us to live well in.”

        Here’s the Team You part.

        Either way, Wolfie, I’d like to look for something smaller and newer, a single-level home that accommodates *my* disabilities that’s easily cleaned, and has all appliances.”

        He may realize he’s powerless and back down. But, let him own this Really Good Idea, and enthusiastically give him credit as you pursue it out loud…-Have you, LW, ever prowled Zillow? What your house is now worth, may be worth looking into. Money for surgery! College money for boys! Invite a Realtor over. Cute, hoarder-resistant homes are very seductive! Print out a few and show him.

      • This has been on my mind. His mother sounds absolutely wretched – but I think that if he’s going to function (which you need), he should be looking at her effect on him beyond food. Like, for instance, how he relates to his caregivers.

        You say he’s treating you worse since he got sicker. Dependency can trigger an attempt to be re-parented, conscious or not. From what you say, Wolfie would have had to work very hard not to pick up some unhealthy beliefs:

        – I need infinite validation (because in my most formative years I was emotionally abused and never learned to self-soothe).

        – Criticism is abuse (so there’s no such thing an an overreaction to a minor request because I’m the victim).

        – Caregivers can’t be trusted (and so must be controlled).

        – Caregivers deserve zero appreciation (because my template one didn’t). Quite possibly, they deserve to be punished.

        If he’s doing this to you and driving out professionals, I’d say those attitudes are in place, and you may need to consider the possibility that they’ll get more extreme the more dependent he gets, unless he gets some help to tackle them. You can’t stay in an endless round of ‘Prove to me you’re not my mother;’ you are, like his mother, a human being, and need to live as one.

        Would he be willing to address this, do you think? If he was able to cast his unfair actions as ‘panicking’, maybe?

  21. V for Valski said:

    LW, I just realized that your life has had No solo time! Just throwing it out there that you could also choose a life free of partners with serious health problems requiring constant high maintenance.

    I was young and at first bewildered at watching my aunt choose one alcoholic diabetic partner and after that person died, choose another abusive, needy, rejecting alcoholic. Neither partner took responsibility for their health; it’s on her. She stuffs, then transmits her rage to her frightening small dogs, who bare their teeth and growl and lunge at everyone.

    It’s interesting that my aunt’s father had the same addiction/health profile but after his death, aunt’s mother Noped out of getting another partner, saying that she would have just ended up taking care of him. She was of the always-married, dependent women who came of age after WWII. Yet she sold off all their stuff and furnished a cute new apartment in an assisted-living development. If she can do it, I figured I could, too. And I love my solo life, free of energy vampires.

  22. LW here. I do want solo weekends with Jon. Currently Wolfie is mobile enough to ride his motorcycle, and doesn’t need someone right there with him 24/7. so I can have solo weekends without arranging care.

    The sons are both of ours. The eldest is autistic spectrum, and while he’s willing to help, he has his own life and he’s got good boundaries; his dad is frequently pissy about how Eldest won’t drop everything and come over to do the lifting when he’s suddenly decided he wants to work on something, but even if I don’t think leading a guild in an MMORPG is as important as Eldest does, I respect his schedule. Younger is a junior in high school, and he can help on occasion, but he’s got enough on his plate. I’ve pulled them both aside and told them just how sick he is.

    So, the basement. Wolfie finds meaning in objects more than I do. He also is a creative man with a lot of project ideas. He also has severe ADHD. Add that to twenty-five years of living in the same house, and now the inability to get down there and do anything about it… The basement is hoarded up. His shop is hoarded up. The reason the house isn’t hoarded up is that I won’t let him.

    We live on his disability. This means that when he does die, I have about a month to get everything cleared out and the house ready to sell. I have fibromyalgia and some pretty bad orthopedic problems that need surgery. I would prefer to space the basement out over months of “take a bag up to the trash every day”.

    As to selfcare: Don’t have the money for a gym. When I tried that, Wolfie wanted to go over with me, and then wouldn’t go, and wouldn’t let me take the truck to go myself, because he might need to go somewhere. Don’t have the money to pay anyone to help round the house or outside it. I wear my hair long so I don’t have to get it cut, and I need foot surgery and can’t have it because Wolfie can’t take care of me when I can’t bear weight. I do yoga most nights at home.

    • I don’t know if it would help but I find Unfuck Your Habitat a good resource and used it to help my partner fix up his place, which was a bit of a crap hoarders paradise. He was very much ‘it’s ALL sentimental and the us much of it so meh, what can be done?’

      We did short bursts room by room, maybe 20 minutes every other day. He sat comfortably and I had a trash/donation bag and we agreed to both be tolerant of each other. I love decluttering and I can be impatient. I found his hoarding was a museum of the bits of his life that his illness took from him. So we broke it into short sessions and asked family to help us dispose of big items.

      He found it really tough but now loves having a clearer space. I think on a mental energy level, it helped him to release a bit of the memories of what his illness stole from him.

    • Cyberwulf said:

      He wouldn’t let you take the truck to the gym because he might need to go somewhere?

      If you did get the foot surgery and were temporarily disabled, would you qualify for any free/reduced cost in-home care, given that you would then have two disabled adults and a minor in the home?

    • Helbling said:

      Op, I have little to say that hasn’t been said, but I just want yo send you Jedi hugs and good thoughts all the same.

    • B. said:

      Re: no money for people to help around the house.

      If you haven’t already, could you task someone (your younger son, Jon, your elder son, a trusted friend…) with researching if y’all qualify for any social/guvernmental program that sends part-time help to your house for free?

      If there aren’t any in your area (if there are, use them without shame, that’s what social services are for!), could you task that same person with contacting churches and NGO’s and ask for help? Again, no shame in asking for help somewhere people actively want to help you.

      With some intense internet digging and maybe a couple phone calls, this person could unearth very useful resources for y’all. That’s maybe something even your younger could do? Or it could also be a team project for your sons. At least, it should be possible to find some volunteers to help unhoard your basement.

      Even if you are not religious, even if there’s no church of your denomination nearby, don’t knock asking religious organisations for help. Most have social projects going and won’t (shouldn’t) judge you for your faith or lack thereof.

      • B. said:

        Sorry, I hadn’t seen you’d already researche help programs, I didn’t mean to dogpile on you. The part about churches and NGO’s still stands 🙂

    • hbc said:

      If you can do solo weekends without Wolfie care, you can do solo Wednesday afternoons without care.

      If he can last a weekend without you, he can get by without someone to deal with socks and dropped forks on demand, even if there is someone present who could hop to it with greater ease.

      If he can ride his motorcycle, he isn’t stranded when you take the truck for a couple of hours.

      I can see how you got where you are, but right now it looks like you’ve kind of determined to sublimate your needs to any expressed wants of Wolfie because there’s a (presumed) short timeline and an outlet valve in Jon. But there’s a lot of potential failure modes here*, and a lot of room between bringing in the lawyers and acting like a servant. “Hey, I’m about to sit down, last call for any help for the next 30 minutes or so.” “There’s a free Yoga in the Park on Saturday at 11:00. You can drop me off if you want to keep the truck or I’ll drive myself, should be back by 12:30.” Any temper tantrums can be basically ignored (“I’m sorry you feel that way, but I’m still going to do X”), because he doesn’t get to decide for you that you can’t use your own damn truck or that his sock situation is more important than your aching feet.

      *What if Jon discovers that he’s not willing to spend 2 or 3 or 5 years being #2 when he wants to be #1? What if he starts feeling like a caretaker for a caretaker and grows tired of caring for Wolfie by proxy? What if Wolfie lives longer? What if Wolfie gets worse and weekends are impossible?

      • SFC said:

        Yes to all of this.

      • Tim Tam Girl said:

        + heaps

    • Lily said:

      “and wouldn’t let me take the truck to go myself” ? What the hell? That’s not how one treats a partner.

      Sorry, LW, but now I think Wolfie is just a dick who doesn’t respect you. (Of course he is disabled and legitimately struggles a lot; but one can have health problems *and* be a major dick.

      • bat lord said:

        Yeah. Wolfie sounds an awful lot like the ex-friend that I often refer to on here: someone whose (legitimate) struggles and problems have started to serve as an excuse or cover for controlling and jerkish behavior.

      • Turtle Candle said:

        Yes, that detail definitely made the hairs stand up on the back of my neck. It’s hard for me to see that as anything other than controlling. I have to go with you; if I don’t want to go, you can’t go, because of made-up reason involving the truck.

        I’m sorry, LW. You should be able to at least have access to transportation for an hour or so to go do something good for yourself. That is so, so, so not too much to ask.

    • Goat Lady said:

      LW, it is possible you may have to rush the basement anyway. As a fellow fibro person, recommend wandering through there now and getting an idea of anything you might want. I mean also if Wolfie can’t get down there, and you maybe have some headphones on so you can’t hear him, he might have to get his own damn ketchup. But if you have an idea of what you want and where it is, it will make things a lot faster.

      If it comes down to it and you can do it without harming yourself financially, you can also probably call up the local shop teacher at the high school or community college and say “I want to donate this equipment to you, but I really need the trash gone too” and they can probably bring over a team of teenage boys and get it knocked out.

      And like Cap said, people die unfinished. Let your sons be responsible for getting stories from their father if they want them. Yeah, after having a parent or grandparent die we often wish we’d done things differently, and I can understand an urge to spare your sons not having those stories. But that’s their decision and their mistake to make.

      My granddaddy got meaner in his last couple of years, dying of emphysema and congestive heart failure, so I kind of have a feel for what you’re dealing with. Add your own chronic pain on top of that and you have my love. Ask yourself what’s essential to stay alive and give yourself the gift of not giving a fuck about as much of the rest as you can.

    • Can you call on your other relatives to care of you while you get your surgery done? There also may be volunteer groups, such as a local faith community, to help you.

    • Elizabeth said:

      Have you applied for disability or SSI? That could give you guys a bit more coming in to help you afford some caregiving.

      Also, any skills or services to trade for some caregiving?

      • I’ve tried for SSI, and got denied several times because I know who’s president and mayor and can bend over and touch my toes and see the eye chart. Sure, I can do all that. I can lift a fifty pound bag of feed, sling it on my shoulder, and walk the fifty feet to get it where it needs to go.

        Once.
        And then sit the hell down for the next hour and a half.
        And be exhausted the following day.

        So because the system is set up to deny people, I don’t get in.
        I can try again, but I’m so damn busy, it’s just ridiculous.

        • neverjaunty said:

          Have you spoken to an SSI attorney? It is very typical for SSI to be denied just to make you go away, and a lawyer can help you negotiate this. Attorneys who handle Social Security benefits don’t take money up front, they get reimbursed at a fixed percentage of any payments you get for a while.

          • Bartleby the Caregiver said:

            Seconded re lawyer. And you have to work the “sit the hell down for the next hour and a half and be exhausted the following day” into your answer when they ask it. They won’t prompt you with helpful follow-up questions because the system is set up to deny people, as you say.

          • L.Tango said:

            THIS I was horrified to learn how so many deserving people are turned down. I had a professional agency through my former work, helping me.
            There is free legal aid at so many sources. There are lawyers who will work on a sliding scale (bless you, legal people.)

            The main shift one has to learn, LW, is this is the place where you quit glossing over how hard things are for you to do. Learn to tell the examiners the whole truth, and don’t give in to their rushing you. It feels weird for a short time, then it’s a huge relief that will feel like your whole body just- changes shape.

            “That’s too much for me” “This movement causes me to be in pain for x time afterward.” “I’m kept economically dependent and have no other source of income*.” “Here’s the list of my diagnoses; this was recommended as urgent x time ago, and I’m prevented from getting surgery.” “I do not have free use of the vehicle.” “I need a new medical evaluation.” “My safety is impacted by hoarding.” (This alone is a hot-button across several agencies as it poses an immediate threat to your safety, to emergency responders, and to your neighborhood.)

            In my area, Jewish Family Services has a coordinated approach to helping people, and you don’t have to be Jewish. The guy I was assigned was slow-witted and incompetent and repeatedly failed to fill out my intake forms properly, but that’s not how the rest of them work. Which brings up an important point: some of the “help” won’t be helpful. It’s not any reflection on you and you still deserve help. Learn to step around them failing and try again.

            Wolfie was able to encroach on your freedoms over time. Abuse is a game of inches. If he’d of lead with this profile when you met him at 18, you’d of Noped out.

            *You may have your own SSI resources from Wolfie’s taxpaying history through your marriage longevity, even if you’ve never worked.

    • You have probably already thought of it but could you claim any disability or other social security for YOU?
      I live in the UK so I don’t know how things work where you are but I get various social security payments and social services and my partner is eligible for some too because he’s disabled and because he’s my main carer.

    • Lady, I have been in a similar spot–does Wolfie have life insurance? This is going to be unbelievably important at some point. Has he made a will? Yes, you are married, but if he dies intestate things are going to be much harder for you than if everything is spelled out.

      My husband also did the “we can’t afford a gym membership for you” thing even though an alumni gym membership at my alma mater was almost nothing. It wasn’t about the money, it was about me having something for myself.

      • He did have. We had to cash it in to get the roof repaired five years back.

        I don’t think he has a will, but I will ask him about it.

        • He should make a will if he doesn’t have one. Everyone should know what’s in it, to minimize stress on you afterward. There is always a family member who is all about the money and will make everyone’s life harder in whatever way they can.

          You should also see if there’s any way to obtain some affordable life insurance for him–check through your bank, or join a credit union (they usually offer a lot of member services, more than banks) that offers life insurance as a perk. You can also check through any professional organizations he may have belonged to etc, or see if there’s something for motorcycle enthusiasts. You’d be surprised what can be out there if you start looking. Life insurance can help you with things like cremation or burial, funeral or memorial expenses. Simple cremation for my husband was $1100. If he doesn’t want to take out his own, see if you can take out life insurance on him. It is possible to do this, although I don’t know any details on it, as I suspect it varies by state, and also I’ve never done it myself.

          My husband was on private disability insurance, and spent every penny that came in for literally eight years, and wouldn’t pay tax until the IRS came after him, because the prognosis for his condition was that less than 5% of people survived more than six months, so he spent and spent and spent, assuming that he would die before the bill came due. He lived for 8 years. The only reason I wasn’t completely destitute afterward was because of his life insurance, which he couldn’t spend into.

  23. Temperance said:

    LW, it sounds like you’re absolutely strained with the stress of a full-time job and caregiving tasks. I think a support group for caregivers could be essential to you, and a support group for critically ill/disabled folks could be essential for Wolfie.

    I went through a period where I was dependent upon my spouse for almost everything after a critical illness. I pulled through, and got through it relatively quickly. I felt angry, frustrated, and mad at the world. I did *not* take it out on him or treat him like my personal butler, though, for the most part.

    What I also did was depend upon neutral caregivers whenever I could. I liked being able to be Booth’s wife rather than his ward, which we worked out by adding mandatory fun into easily one of the worst times of our lives. He had to manage my medication, food, and help with things like starting the shower because I could not. He also had to do all of our laundry, cooking, dishes, and pet care.

  24. LW, i feel for you. I am in a caregiver situation different from yours, but I can affirm that the experience often leads to a potent brew/maelstrom of emotions, challenging circumstances, and general shit. What you are going through is hard, and I send you Jedi hugs should you want them.

    Have you or Wolfie been told about case management by any of his providers? Many parts of the country, and many health care providers who work with folks with chronic health issues have connections with social workers or other case managers (either in their office/practice/HMO/etc.) or in their communities. A case manager would work with you and him with his permission but could address all manner of quality of life things such as arranging for respite care (someone who can spell you from caregiving duties for a few hours or longer) to transportation to appointments to help with navigating things like Medicare paperwork should you need them. Often, communities also have organizations that aid in helping people “age in place”, i.e., provide services that help people maintain their ability to stay and live at home.

    Most of all, though, I encourage you to do all the self care. This shit is hard. Caring for a sick partner or family member is hard. Doing so when there is an aspect of your relationship that people criticize is unfair and even more marginalizing than caregiving is already, especially when your partner is not elderly. Caregiving might not be on the radar of your friends, loved ones and community members if they have not been through it themselves in some capacity, and often people don’t understand what it’s like. For instance, I see a lot of comments suggesting that you should have compassion for your partner — my take from your message that you do, but you are trying to keep your nose above water here, and your reserves for compassion and patience may be low. This shit is hard.

  25. atreic said:

    Dear LW,

    You say that you want to ‘hold your boundary’. But if I’ve read things right, this seems more about negotiating new boundaries than holding one. You used to spend three weekends a month with Wolfie, and one weekend a month with Jon, but then the three of you renegotiated that you would spend every weekend with Jon – sometimes just you and Jon, and sometimes you, Jon and Wolfie. That sounds like it might have been a hard change for Wolfie, but you have been married for over twenty years and love each other, renegotiating hard things is part of that, it is possible it was all done in good faith and people were confortable with the proposed plan.

    It reads like you’ve tried this for three weekends – the two that were just you-and-Jon, and then only one weekend with you, Jon and Wolfie – and Jon has decided that this doesn’t work for him. No ‘that was really hard, Wolfie was difficult in these ways, how do we fix this’, just ‘Next weekend, I’d rather have neither of you come than both of you come.’ After trying it once. This doesn’t sound like ‘Wolfie and Jon get along really well’, and it sounds like Jon has leapt into ultimatiums rather than try to work things through.

    I’m not saying Jon isn’t allowed to have boundaries. If he doesn’t want to spend weekends with you and Wolfie, if that’s hard and upsets him and Wolfie behaves in ways that are difficult for him, of course he doesn’t have to do that! But if he loves you and gets along well with Wolfie and wants to support you in caring for your ill partner of 20 years who you love, having a ‘time with Wolfie is hard and no fun, I don’t want to do that’ boundary seems a strong boundary to have. Was that the boundary, or could he really just have been saying ‘I can’t do this two weekends in a row’?

    I think it might be helpful to frame things in terms of what you want. ‘I used to spend three weekends a month with you and one with Jon, but now I want to spend every weekend with Jon and none with you because Jon wants it that shape’ is a story that is easier to defend for people socialised that other people’s needs are more important than their own, but you don’t have to spend every weekend with Jon unless you want to – ‘I don’t want to spend the weekends with you because I want it that shape’ is a truer story to tell to Wolfie. And I know it’s hard when there’s someone wonderful you want to spend time with, but the Captain’s point about finding people who aren’t Wolfie or Jon is really wise – it might be much harder for Wolfie to cope with ‘I don’t want to spend any weekends with you because I want to spend them all with Jon’ compared to ‘I need some time off, I want to do (anything that isn’t Jon)’. What do you want in a perfect world? It sounds from your letter that you’re tired and run down and finding any time at all with Wolfie hard work and want to escape as much as possible into happy-Jon-land, but lots of people have made the point that even really really ill people can live for a surprisingly long time. This might not be ‘grit your teeth and put up with it for five years and then sail off into the sunset’ – it’s probably best if you can build a weekly pattern that you can imagine working as a stable ongoing solution.

    If you’re not working (I can’t work it out from the letter, but you say Wolfie is on disability, and you won’t have enough money for the house when that stops, so that seems likely) then a ‘I spend 5 days of the week with you and want 2 days of the week with Jon’ pattern does sound like something that might be possible to negotiate. If it’s more like ‘I get 2 days of the week to do what I want, and I want to chose Jon every time’… well, I can see why Wolfie would be unhappy with that, and not feel like his marriage was a marriage.

    Much sympathy. I really hope you manage to find a shape where all three of you are happy. And I really hope you manage to find ways to enjoy time with Wolfie again – it sounds like you have had many many good years together, and it’s been much harder for you both since his illness – I hope some of the really good suggestions from the Captain and the comments help you to fix that and have more quality time with Wolfie.

    • Cyberwulf said:

      Yeaaahhhh. It’s Jon’s right to have control over who’s at his house, but between this and LW saying that staying with Jon for six weeks after foot surgery isn’t an option, I’m looking at him askance a little bit.

      Could be that Wolfie is a special brand of demanding, could be it’s tough for Jon to listen to him treat the LW like a servant. Could also be that he’s decided that helping LW care for Wolfie is not what he signed on for. I would wonder about a guy who says “I’ll marry you after he’s gone” but doesn’t help out other than weekends in bed, you know?

      • L.Tango said:

        Why is Jon OK with LW’s medical state?
        If someone I loved and planned to marry was in need of medical help, I’d be doing quite a bit more than draping myself on the bed.

        • Cyberwulf said:

          As I said below, I hope she just hasn’t told him about it. Because if he knows that sometimes she wants to cry with pain and isn’t nagging her to get the surgery, he’ll pitch in and help… RAGE.

        • Well, he’s not. But what the hell can he do? He knows that the only thing he could do to make my surgery happen sooner would be to take care of me himself. And he can’t move in with us, and Wolfie is difficult for him to deal with for prolonged periods, so we can’t move in with him for the duration. And Wolfie said he’d divorce me if I spend a month or more away from him. So. He’s stuck.

          When I’m here, he makes sure I rest a lot and if I’m too sore that day to cook, he cooks, or he takes me out to eat. If I cooked but my feet are out of spoons to stand to clean up, he does it. (And he’s got a dishwasher, which we don’t.) He buys me the $150 shoes I have to wear. He buys me new ankle braces when the old ones wear out. He does all he can to help me. It’s just that a lot of it can’t be done unless I’m at his place.

          • Lurker in the Light said:

            I would call that bluff. What would happen if you said: “I am getting this surgery. I cannot live in pain this way. Either I recover here and *you* take care of me or I recover at Jon’s house and he takes care of me. Which will it be?”

            Will he gripe and moan? Likely. Please, do not let that dissuade you. Stay on topic. “Are you saying that you can’t take care of me for that long? Okay, I’ll work out the timing with Jon.” He’s allowed to feel however he feels about it. He can’t use those feels to keep you tied to him.
            I can’t tell you how much it angers me on your behalf that he would do that. Why don’t you ever get to have your husband play the part of a loving spouse who wants you to get better? You say he doesn’t think that death is near. How long does he expect you to go without proper treatment if he’s going to live forever? (I think you should ask him that, btw.)

            If you don’t think you’re ready for this conversation, start by admitting your pain to him.
            “Get me tea.”
            “Wolfie, I just sat down and I’m in terrible pain. I can’t do that right now.”
            Let your pain be real. Let it affect him. You do not have to be Superwoman. He can either wait or hoist his carcass out of his chair and get it himself.

          • Bartleby the Caregiver said:

            I would call that bluff even if it’s not a bluff.

            Easy for me to say, I know. You love him. You don’t want to get divorced. He’s just … not leaving you much choice.

            I complain a lot about my situation with my boyfriend, and there’s a lot about his behavior that makes me angry. But if I’m sick or in pain, he takes it seriously despite the fact that I’m never as sick or in as much pain as him. If I needed surgery, he’d worry about what arrangements we’d have to make while I was out of commission, but he’d never tell me not to do it.

            Never.

          • BarlowGirl said:

            Okay so here’s a big thing I’m noticing.

            If Wolfie is capable of taking care of himself if he divorces you (or does he think you’ll stick around to pick up his forks after you get divorced??) then he is well enough for you to get NECESSARY SURGERY and take weekends and the occasional afternoon off now and then.

          • Redgirl said:

            What BarlowGirl said, a thousand times over.

      • Wolfie takes all the air in the room.
        He overreacts to criticism. And when I say criticism, I mean, “Could you turn the TV down a little?” level of criticism.
        He has to constantly be the center of attention, and as far as I can tell, being at Jon’s with me means that he feels he now has two people to do things with him, get him things, and serve as a rapt and appreciative audience.

        I entirely understand why Jon said that. ENTIRELY.

        • So you’re married to this atmosphere-sucking manbaby why, exactly?

          • Aris Merquoni said:

            Okay, that was harsh and pretty unhelpful. You know the reason why people don’t leave marriages that turn bad, or where a fairly able-bodied spouse suddenly needs medical attention and deals with it very badly, or crises pile up and everyone is angry. We all know why people stay married when things sound awful. It’s because people like the LW are compassionate, they remember the good times, they believe in the good in people, and they have a sense of personal integrity that means keeping up their end of bargains they made in good faith.

            The fact that Wolfie is abusing that relationship and that trust to get all the attention and all the care isn’t the LW’s fault. That there’s an entire narrative that women who “abandon” their sick/injured husbands are monsters isn’t the LW’s fault.

            Leaving is not a decision without consequences. It may be the correct decision. But it’s not an effortless one.

          • Turtle Candle said:

            Because DTMFA is much easier to say standing outside a relationship than standing inside one, I assume? I agree that this situation sounds awful and toxic in the extreme, don’t get me wrong, but I think it’s not actually that hard to see how a reasonable and compassionate person might remain in this situation–and in my experience “so why are you still with that jerkbag anyway?” can be actively counterproductive.

          • Rube N00b said:

            LW was 18 and ten years younger than Wolfie when they got together. Now it’s been decades of him being a primary partner, the wage-earner and -what sounds here, like a steadily encroaching system of grooming and abuse. LW didn’t mention having a wonderful college experience that trained her for a job she’s good at. That’s likely b/c she had neither.

            My brother did exactly this -a grown man who chose partners far younger than him who hadn’t started a career or college, and married one who, I learned recently, he isolated and mainly used as a ragdoll for sex and having a child. All the while,verbally and financially abusing her. What is hi-larious is that despite those handicaps, and being left destitute in their divorce, I learned she raised the child and got a job in a company where she started as a cleaning person. The bosses liked her work ethic and got her trained to where she’s got a nice desk job in the office as an Area Manager and she has a lovely home and new car that she paid for herself. Her equally-abused son is now equally successful, and just took her on a luxurious vacation. Yes! I don’t know her but she is my hero.

            Meanwhile, my brother lives alone, refuses all help, stole money I loaned him and thanked me by sneering at me, and hasn’t worked in years, other than doing a regular shift feeding himself to the family dragon, alcoholism. He loathes all women, but that’s our fault. Wolfie’s of the same tribe.

    • Thanksforallthefish said:

      I didn’t even think about doing the math. This is a really interesting point and one that should be considered. If Jon has put down an ultimatum after one weekend that’s something worth pondering…Or if it’s I just can’t do this 2 weekends in a row. Good luck LW

    • efmather2006 said:

      Re: your second paragraph, based on the letter and LW’s other comments, a lot has changed in this situation over the past 2 years: Wolfie’s and LW’S health problems, Wolfie’s Darth mom dying, LW’s relationship with Jon changing from friendship and play partner to something deeper, Jon wanting to marry LW in the future and LW informing Wolfie, Jon’s drinking problem and sobriety. I would think this, in total, could have an effect on Wolfie and Jon getting along and Jon’s firmer boundary.

      It seems like Jon and LW’S eldest son have the firmest boundaries around this. Definitely agree with your comment about new boundaries being renegotiated going forward, and LW making a new pattern out of the need for self care.

    • Oh, if I could, I would spend every weekend with Jon. And every week. He wants to spend that amount of time with me too.

      I love my husband, but I would like a vacation. A nice long vacation. Without him.

  26. Amtelope said:

    LW, I have a ton of sympathy for what you’re going through. One thing that stands out to me is that you’re framing this problem as “this situation is fine except for conflict over how much time I spend with Jon,” but it really doesn’t sound fine. You’re not getting your medical needs met, and are putting them off until “when Wolfie dies,” when that’s some unknowable number of years. Wolfie is resisting your efforts at self-care and controlling your transportation — you can’t go to the gym because he might need the truck to “go somewhere.” These are problems.

    If you keep living with Wolfie, I think you’re going to have to make some changes. Your surgery has to happen sooner than “when he dies.” That could mean that your kids step up for six weeks to help both of you around the house, or that you stay with Jon for six weeks while your kids step up to help their father, or that Jon comes to visit you at your home regularly to help, or that Jon sleeps on the couch at your house while you’re recovering (no, that doesn’t sound like fun for him, but serious relationships aren’t all about fun), or that between you and Jon and the kids and a GoFundMe and any other source of financial assistance you can scrape together, you come up with money to hire a paid caregiver to help you for six weeks. This is a need for you. Your needs are as important as Wolfie’s.

    Second, you’ve got to insist relentlessly on self-care. Caregiving will burn you out completely if you don’t take time to recharge, even if Wolfie doesn’t want you to. Take the weekends with Jon. Insist on getting out of the house, whether that’s to the gym or to do something free. If you can’t do that without a truck he controls access to, see if there is a friend who can pick you up, or if you can afford the occasional Uber to get you somewhere where you see other people and do something you enjoy.

    And my last thought is that I would urge you not to consider it a failure of your marriage or your love for Wolfie if you can’t keep living with him until he dies. There are other ways to show love and care for someone, including visiting him regularly to help with chores and spend quality time together while living somewhere where you can breathe. I wonder if you wouldn’t both be happier if you were there two or three days a week, with the energy and patience to make that time together good, rather than 24/7 when you’re resentful and miserable and living for your weekends away.

    • bat lord said:

      Seconded, seconded, seconded. Especially “Your surgery has to happen sooner than “when he dies.”[..] This is a need for you. Your needs are as important as Wolfie’s.”

      Your needs really are as important as Wolfie’s, dear LW. I realize that this might seem impossible or blasphemous to think, but it’s true. You deserve many things, not least of which is friggin’ healthcare.

    • B. said:

      All of the this.

    • He has outright said to me that if I spend four weeks or more at Jon’s house, FOR WHATEVER REASON, he will call a lawyer.

      And in theory, my house is much more accessible for someone on crutches. (At Jon’s, I would have to stay on one floor or the other for the entire time, cause all the bedrooms are upstairs.) If, you know, there was 2/3 less stuff in the house, and someone else to come and do the housework for that time, and the shopping, and the cooking.

      • Amtelope said:

        Wow, what a coincidence that his limit about how much time you can spend at Jon’s house is just slightly less than the time you need to recover from your surgery! That … really doesn’t speak well for Wolfie.

        I have one questions and two pieces of advice, then:

        1) Does Wolfie have a plan for how you will get this surgery? In his mind, he’s going to be around for thirty years; how does he see you getting the medical care you need? If the answer is “he is okay with me never getting the surgery,” I think it’s time for divorce, period. That’s not how a man who loves you treats you.

        2) If his answer is that at some hypothetical point in the future, he’ll feel better and be able to care for you while you get the surgery, I think it’s time to say “I’m not willing to wait for that to happen. I can either get the surgery and stay at Jon’s house, or we can come up with another plan for my recovery that will work. If we can’t come up with that plan in (reasonable period of time, like six weeks), I’m going to book the surgery and plan to stay at Jon’s house. If you want to file divorce papers/don’t want me to come back after I’ve recovered, that’s your choice.”

        3) And — as great as Jon may be, are you sure that you want to go from a relationship with a demanding alcoholic (even given that he’s sober) to a relationship with a man with recent, active alcohol problems? (If he “developed a drinking problem” last fall, it hasn’t gone away in six months, even if he’s currently remaining sober.) That might be worth hitting Al-Anon to talk to some other people who’ve been in your position about. I hope everything works out well for you with Jon, but I wish there were some way for you to live on your own for a while, and not have to deal with anyone else’s problems. It sounds like you have spent a lot of the last years dealing with Wolfie’s problems, and recently also with Jon’s, rather than having the time and energy and support to deal with your own.

      • You need this surgery. It’s not optional, it’s required. You are in constant pain. I know you love Wolfie, but you are important, and you should be most important to yourself. Your house isn’t accessible for someone on crutches, because your house comes with a verbally abusive man-baby who makes you wait on him hand and foot.

        At this point…what are you really losing? Schedule the surgery, go stay with Jon. Let Wolfie call a lawyer. I bet you he won’t.

      • Tim Tam Girl said:

        Dear Lady, it sounds more and more like the only reason you’re still with Wolfie is because you feel you should be with him until he dies. And you know what? That’s just not a good reason or even a workable plan.

        It sounds like he Is using his ill-health as leverage to keep you around; and since that is what keeps you there, of course he’s not going to do anything to help himself – and he’s *definitely* not going to do anything to help you.

        Lady, I will be blunt: it doesn’t sound like you have much affection left for Wolfie, just a sense of duty and a desire to do the ‘right’ thing. And from everything you’ve said, that’s bloody well fair enough: he has long since stopped being a partner to you, and it’s not because his illnesses prevent him from it, it’s because he has no interest in finding ways to be one.

        You love Jon. He loves you. He treats you well.

        You love yourself. You know the things you need to treat yourself well.

        Wolfie is not only failing to treat you well; he is doing everything he can to prevent you or anyone else from treating you well too. That is the textbook definition of being a bad partner, and looks a hell of a lot like abuse as well.

        I feel from your comments like you’re starting to recognise some uncomfortable things about the dynamics in your relationship with Wolfie. I hope you are also starting to realise that *your* life matters.

        Here’s a fact: you may die before Wolfie. You may be in an accident or acquire an aggressive illness or simply pass away in your sleep before Wolfie dies. And if you do so without having given yourself any chance of a life of your own, would you be ok with that? Would you be ok with having sacrificed your chances of a happy, peaceful life to try to stick it out next to someone who seems only interested in keeping you around because you do his daily labour?

        You are the best judge of your own life. This choice is yours and you have the best information on which to base your decision. But know this: you would not be selfish to leave someone who treats you poorly and without care or consideration, even if that someone is dying. Because you’re dying too. We all are. Every day, every one of us is closer to our deaths. And we all owe it to ourselves to do the best we can to ensure ourselves good, kind lives in whatever tiny blip of time we get. That means you, Lady.

        • B. said:

          Please, LW, listen to this. Please!

  27. remi said:

    I just want to say it’s kind of alarming that the LW can’t even discuss spending time alone with Jon at this point without Wolfie throwing down divorce-talk. Is this something he brings up often? And if so, does he only bring it up to shut down LW’s independance or are there bigger problems not mentioned in the letter? Yes, suggesting a big change to how people want to spend time together could lead to a discussion of whether the relationship is currently working, but it worries me that the LW is expecting Wolfie to jump straight to divorce lawyers. I don’t want to say that it’s an abuse or manipulation tactic without knowing more information and when I may have misunderstood the situation, but if it’s a threat that comes up often, that’s not a great sign.

    • Cyberwulf said:

      I wonder if Wolfie is finding it more difficult to be okay with polyamory now that he’s unhealthy and Jon is healthy. LW says elsewhere he’s always had this thing of feeling left out. Maybe he is worried that LW won’t love him any more (and maybe on some level he knows his demanding behavior is slowly murdering her love for him) and he’ll be left to face death alone. None of which excuses his behavior mind.

    • Having been in a similar situation myself, I find myself wondering if that’s the only big serious “consequence” he’s throwing around. I spent 5 years with my late husband threatening to kill himself while I was at school on a near-daily basis, and my situation had a lot in common with the LW’s.

      • Buttermilk said:

        It’s also an empty threat, right? What does Wolfie do if he can barely put his shoes and socks on, can’t afford to pay for at-home help, and suddenly his Lady is not there to help him because he divorced her? He’s using it to try to control her *not* because he’d seriously consider divorce.

        • The thing about this kind of thing–in my situation, anyway–is that by the time threats like this start, you are so worn down by everything else, and you have been so conditioned by your partner and his manipulation, that it’s not really the threat that terrifies you, it’s everything that came before, making you think that your partner’s anger at you could cause him to drop dead, and that in making him so angry you are effectively murdering him.

          My husband was also a hoarder, and I think that people who have not lived with a hoarder do not understand the sheer depth of the fatigue and horror and self-hatred that it brings. She’s been living with the hoarding for decades; she was already so mentally and emotionally exhausted that one more thing is enough to just completely destroy you–and she has endured a whole lot of “one more thing”s in the last several years, it sounds like.

      • Yeah, that too. I have the ammo hidden so he can’t do it that way, but yeah.

        • This is abuse.

          Please listen to me. This is *abuse*. I have been there. It is abuse.

        • bat lord said:

          Yes, I have to second that: Wolfie is emotionally abusing you. This is not how he should be treating someone that he loves (or anyone at all!)

          You may or may not be ready to think about this, but leaving him might be a Very Good Idea.

        • I’m thirding.

          This is abuse.

    • Oh, he’s done this forever. Just because I recognize it as a manipulatory pattern doesn’t mean it still doesn’t pull my strings when he says “You don’t love me anymore. You want me dead, etc.”

  28. Dear LW,

    Waiting on widowhood is a difficult place to be, and one of the hardest things about it is that you kind of get fooled into thinking he’s the only one that’s going to die. Not that you don’t know you’re mortal, but you lose sight of it, and put a lot off until later, after, when I have to…and there is absolutely no guarantee later, after, and when I have to will ever actually happen. You trade your quality of life in the now for the promise of a tomorrow. This is not a good trade.

    You do not have to wait on widowhood. Yes, your husband is going to die. It could be five long and lingering years, or it could be the next time he takes the bike out. We never know what is going to happen, and that is why we can not live our lives anticipating. We have to live in the now and focus on making today as good as it can be. The people here have all kinds of useful suggestions about the particulars of that; pick one that seems realistic and start with that.

    Also? The man who can’t care for himself is a man who is not going to have the wherewithal to initiate divorce proceedings. YOU ARE THE ONE WITH THE POWER IN THIS SITUATION. If you left and didn’t come back, what would happen to Wolfie? Many times people threaten with the things they’re terrified of. Everything he is doing sounds like a man who is profoundly frightened. Also don’t bank all your future on Jon. The person Jon is when you’re married to Wolfie may not exist anymore once Wolfie’s not in the picture. People change, even when you think they won’t. You don’t have to decide all your tomorrows today.

    My advice is for you to reach out to your local hospice. Even though Wolfie is not there, hospice volunteers have a great deal of advice and useful techniques about living with someone who is dying. Your life doesn’t begin for real once he’s gone; your life is really happening right now. Please find someone close by who can hear what you’re saying and can care about you as a human, not as a romantic partner. You need nurturing and support because being a wife in this spot is very very very hard.

    • Cyberwulf said:

      “Also don’t bank all your future on Jon. The person Jon is when you’re married to Wolfie may not exist anymore once Wolfie’s not in the picture.”

      Yeah, it’s… unwise to use a vision of a rosy future with Jon as a carrot to get you through years of foot pain and dealing with your dying husband dying in denial while being difficult and demanding. I know he said he’d marry you, LW, but what’s the longest length of time you’ve spent together, when nobody was dealing with an alcohol problem or a dying husband?

      • He only overcame his terror of marriage (His first wife took him for $100K, forced him to file bankruptcy, and it’s only lately he’s got his finances to where he’s able to breathe again) around last September.

        Before that, I understood where he was at, and had planned to, if Wolfie died tomorrow, move into my mother’s basement despite my issues with her, and begin looking seriously for a submissive man to marry.

        We’re working on the time spent together thing. The only reason I got the two weeks was the alcohol problem. Wolfie likes me right where he can see me. I don’t know how much of that is fear and using me as a comfort object, and how much of it is controlling what he can control.

        • As my husband got sicker, he grasped at me harder and harder–and that very grasping exhausted me faster and faster. The more you tighten your grip, the more star systems will slip through your fingers, etc.

          I understood even at the time that he was doing it out of something you could squint sideways at and call love, but he didn’t love me like someone loves another person, he loved me like a drowning man loves a log.

  29. Jedi Hugs said:

    “You have to save yourself before you can save anyone else” is a quote I heard from an emergency services worker, years ago. I think you need to hear it, think about all the layers of meaning around it, and then get your own health issues fixed right now. Not just your feet/ankles, but all of them.

    And then (apologies for the allcaps) PRIORITISE YOUR MENTAL AND EMOTIONAL HEALTH because a mental breakdown is just as real as a physical breakdown and can take longer to recover from. You NEED time for self-care, and time AWAY from Wolfie, and TIME ALONE, away from both Wolfie and Jon. You need short breaks every day, and a longer break two or three times a week. I don’t know what shape that would take for you, but that is a real physical need: it will change your brain chemistry and brain activity patterns; it’s not some luxury optional extra – it’s a necessity for all human beings. (Sorry for the rant but Western civilisation has some very shitty attitudes to mental & emotional health, and sexism, and treating people like humans = workers = robots. Ugh, NO)

    If you’re going to be caring for Wolfie for years, then this is a marathon, not a sprint. You need to be as fit and active as possible now – because as he ages, he’s only going to need you more and more – which will make taking time away for surgery & other health fixes ever more impossible. Do it all now. To paraphrase the emergency services people: “Save yourself so you can save Wolfie” (if that’s what you decide to do).

    One thing I really think you need to start doing right now is to treat your essential human needs as non-negotiable. Drop the question-format “Is it okay if I…?” and start announcing statements of fact: “I’ve booked my surgery. It’s on [date]/I’m taking the truck to go to yoga class. I’ll be back in three hours” – and then pick up the keys and leave. Your needs matter. YOU matter. *offers you a jedi hug*

    One more point that really struck me is that you said both you and Wolfie are doms. Does Wolfie feel like that part of his identity is lost or threatened? Is there anything he, or the two (or three or more) of you can do about that? Many of my kinky friends with disabilities have said that the rush of a good scene can be better than painkillers and/or antidepressants, and you don’t have to have PiV sex (or any kind of sex!) to get that rush. Most kink is 80% mental attitude/fantasy anyway, so is there any way to make that work for Wolfie and/or you? Are you still getting enough non-sexual physical touch to feel healthy as individuals and also close as a couple?

    I know you said your sex life has kind of collapsed (understandably) while you still have your thing with Jon. (I’m not asking you to answer this publicly if you don’t want to!) But, what outlets for sex and/or dominance does Wolfie have right now? Is it possible for you to go to the kink community to find someone who likes being ordered around to be Wolfie’s sub/service sub and/or friend and/or lover? I realise adding another person is a lot of work, but if they could share some of the Wolfie-emotional-labour and also give you time away from Wolfie while they play (and hopefully a happier Wolfie), that could be priceless for you.

    Maybe you could also reach out to the kink community to just ask for vanilla help. Lots of, say, plumbers or carpenters or whatever might be willing to help a fellow kinkster, if you can’t/don’t want to turn to, say, your local churches. A lot of kinksters are quite lonely and isolated, so things like “painting party + pizza at my place!” can be really effective. People love being able to relax and be open about stuff and feel normal.

    And another section you don’t have to answer publicly if you don’t want to, but it needs to be said… Has the dom attitude from Wolfie started to tip the line over into possibly abusive? And I don’t care whether Wolfie intended things that way (Intent is not magic!) I mean, do *YOU* FEEL like you accidentally stumbled into a spontaneous scene you didn’t want? Do you/Did you feel like you wanted to safeword (if that’s a thing you do) out of what should have been an everyday interaction?

    I mean, “male dom gets old/disabled and cannot cope with mortality/ego threat, starts pushing boundaries, crossing lines, becomes abusive” is a bit of a cliche for a reason, you know? (I have a whole side-rant about how failing to hold PWD to account for jerkishness is the backside of ableist paternalism, but this is too long already. Sorry!) I hope for your sake this kind of abusive-disabled-dom stuff isn’t what’s happening, but if it is – it’s not your fault. You can’t fix it by yourself. It’s Wolfie’s problem – Wolfie’s an adult with agency; he has to fix his own issues.

    And IF that is all or a big part of the problem – and IF Wolfie won’t admit it or work to fix it – then you need to leave.

    If there’s no abuse, then I sincerely apologise for insulting you and Wolfie with that last section. Jedi hugs to both of you, and to Jon. I hope you find a way to make this work.

    • He really doesn’t. Again being a little graphic, diabetes and CHF do a number on the hydraulics system. He can’t stand long enough to do impact play with anyone, and most of the female subs around want to be the primary relationship with someone who can take care of them and who is in good enough condition for sex. But if I go find them… then it’s another job on my plate. I actually tried. We had a live-in submissive girl. He destroyed, with his King Baby attitude, her desire and willingness to submit for him, and made sure that he needed so much attention from me that her relationship with me sputtered and died, as we not only had no time to have sex, we literally had no time to talk that he wasn’t present.

      Well, he’s kind of living the cliche at the moment, I’m realizing. I grew up with a lot of belief that women work all the hours god put in a day and doing it perfectly is the expected outcome. A lot of this I’ve unpicked, and dealt with, but this is bringing a lot of it up, and more work needs to be done.

  30. kourei said:

    While I agree with all the commenters who have talked about making your own medical needs a priority and getting help with Wolfie, this jumped out to me as well:

    “We’re also kinky, both dominants …… Jon wears my collar.”

    And it sounds to me like Wolfie and Jon are both a little high-maintenance at the moment, and now you’re a dominant who finds herself in the position of having to serve both your partners outside of play time. As part of your self-care, have you considered finding an additional play partner?

    If you negotiate five days a week with Wolfie and two days a week doing whatever you want, as suggested above, spending some of that time with a new sub might help you feel more like yourself. The relationship with your new sub could be light and fun and not so emotionally fraught. If I were in this situation, I’d look for a female sub just to get a break from gendered expectations.

    Good luck with everything, and I hope you will find a way to be happy.

    • bat lord said:

      I like the idea of LW doing something nice for herself, but adding another relationship or looking for someone else to play with may be too much work.

    • Also, submissives are human beings, not toys for a quick ego boost.

      • bat lord said:

        Seconded.

    • Lily said:

      I’d prefer her dumping Wolfie because he is abusive, dumping Jon (because he doesn’t sound that helpful at all, and while helpfulness isn’t the only thing in a partner, not helping a partner who is going through a major life crisis **like the LW is doing right now** is not a good treat in a potential partner), living on her own and starting to date cute nice caring subs.
      Otherwise, no, a sub isn’t a quick ego burst.

      • Cyberwulf said:

        We-ell to be fair to Jon, he gets to say “I’m a play partner, this isn’t a true trio and Wolfie is your mess to handle.” He loses points with me because LW left her ailing husband to be by his side when he was struggling with alcoholism, yet he doesn’t seem willing to give LW any help other than a weekend sanctuary.

        • Vicki said:

          Yes, but I’m not sure that’s consistent with “I want to marry you someday.” That it’s not a triad, and he doesn’t want to provide that sort of emotional support for his partner’s rather demanding other partner is definitely a reasonable line to draw. But this is someone who leaned on the LW for emotional support in his own crisis, and said at the time that they wanted to marry her someday. If he now says “no, I’m just a play partner, you can’t lean on me,” that’s a serious change. If I was in LW’s shoes and that happened, I would ask what happened to “marry me someday,” and no matter the answer, think seriously about how reliable this person was.

          “I can’t be your only support” is reasonable, and “I’m sorry, I can’t be even part of your support for your difficulties with your other partner” might be. “I’m just a play partner” is “don’t make any long-term plans that involve me.”

          • Tim Tam Girl said:

            I don’t see that Jon did say that, though: in one reply, LW said that staying with Jon for six weeks of her recovery wasn’t a possibility, but she didn’t elaborate on the reason for that (that I saw – I may have missed something in the thread); my assumption was that it wasn’t a possibility because of Wolfie’s needs, not because Jon had said no.

            And while it could be certainly be argued that Jon should step up more to help the LW, we don’t know what he has or hasn’t offered. It may be that Wolfie has said he doesn’t want Jon’s help, or that the LW has been reluctant to take it for her own reasons. I realise that these are all hypotheticals, but we also don’t have *any* info about what Jon has or hasn’t done, apart from his saying that he doesn’t want Wolfie to come on their weekends. From this, some people seem to be extrapolating that Jon is unsupportive/ unhelpful, but the LW said his boundary felt reasonable to her, and based on the her report of Wolfie’s behaviour and Jon’s reasons for drawing that boundary, it sounds pretty reasonable to me too. Jon should feel comfortable and safe in his own home, especially if he’s working on sobriety.

            That doesn’t mean that Jon, as someone who cares about the LW, shouldn’t be trying to help her in other ways (that are comfortable and useful for her), but again, we don’t know that he isn’t. And I’m concerned that putting too much focus on what Jon has or hasn’t done distracts from the LW’s actual questions, which are much more about getting her own needs met and drawing boundaries with Wolfie. I agree that Jon is a piece of the puzzle, but the issues with Wolfie seem far more immediate.

          • Cyberwulf said:

            Oh absolutely. I know we haven’t heard much about Jon and Imay be judging him very harshly, but I can’t shake the feeling that he only wants to be around for the good times.

          • Vicki said:

            All fair points. That was a hypothetical, specifically in reply to the suggestion that Jon “gets to say ‘I’m a play partner, this isn’t a true trio and Wolfie is your mess to handle.’”

            I’m part of a poly network, and the connections I have with my partners’ partners aren’t automatic, they are specific and valued connections with some of those people. But that doesn’t mean I would expect the response to “I am worried about $thing in $Other_Partner’s life” to be “oh, well, we’re only friends with benefits” even if they had gotten to the point of “I won’t/can’t tell you to break up with that person, but I also can’t deal with being your emotional support in this.” (They haven’t, nor anything close close, but even if…)

        • It’s more that it’s a V and I’m the hinge.

          He’s paid a bill for us on numerous occasions, paid for car repairs, etc. Right now the reason Wolfie can go to this ride or this rally is because Jon is willing to drop a few bucks that way to pay for gas and entry fees. We both want him to be happy and do this while he can, after all. He’s promised to pay to repair the carburetor on the bike.

          Showing up and actually doing work isn’t something he can do; he’s got scoliois to a degree that gives him a lot of back pain, and he’s working on starting his own business doing data architecture, and just got a contract. And he lives an hour away. So financial help is a lot of what he can do.

          I lean on him a lot. We talk every night, and often that’s me crying into the phone about how I hate seeing Wolfie dying, and knowing I can’t stop it and that Wolfie hasn’t been willing to stop it.

          • Rube N00b said:

            This can’t be comfortable for any of you. It’s very destructive to Jon’s need to put his sobriety first. It’s not treating Wolfie as an adult and an equal. And it blurs your own adult relationship with Jon. Rewarding Wolfie with a pat on the head, an ice cream cone and a matinee movie ticket for not being an adult capable of self-care within a poly relationship, is substantially contributing to Wolfie’s infantile acting-out at not being included. Jon is making a power move to remove the competition.

            Jon should not be paying for Wolfie, unless he’s planning to adopt Wolfie as his stepson or maybe, make Wolfie his sub. Some of those machines in the garage and shop are probably worth a few grand each. Sell those for money. Jon should normally be taking steps to ensure his partner is getting health care. I’d caution him on getting this enmeshed, this early in his AA program. He’s just starting to feel good, and your complicated relationship with Wolfie is descending on him to fix.

            Wolfie’s talk to divorce you is the silica gel packet in your new gadget’s shipping box. Where it says “Do Not Eat?” That’s his kinda sad, terrified threats. It ain’t real-it’s his fear and an attempt to regain control. Do Not Eat. Wolfie doesn’t sound comfortable with being in a poly relationship, at least not right now.

    • Yeah, I tried that. Had a lovely girl. Wolfie shut it down by being needy. I’ve given up doing anything except very casual play at a party (to which we don’t go cause no gas money, and he gets pissy if he doesn’t play and I do…. ) because I have enough on my plate.

      • B. said:

        So it’s ok for Wolfie that Jon drops a few bucks into his entry fees for rallies but it’s not ok for Wolfie that Jon drops a few bucks into you, Lady, going to a party or a gym or some other self-care activity for yourself?

        Fuck.
        That.
        Noise.

        Your wellbeing matters. Fuck Wolfie’s controlling desire of having you in his line of sight 24/7. You deserve quality time with yourself and activities that make you happy. Wolfie can deal. Wolfie will just have to deal.

        PS: I’m so glad your kids are out of there. I only wish you could be, too.

  31. blessedjessed said:

    I can stand it, because I don’t have to stand it for another five years, even. He’s already showing signs of the heart failure getting worse.

    Hi LW. I lost my Dad last year to an extremely debilitating disease and I wanted to mention something of how I felt. My situation was a bit different – at Christmas, my Dad was almost 60, beginning to creak a bit but still mostly hale. By the end of January, he couldn’t walk without assistance, could barely stand and had to manage his pain with morphine. He was dead by the end of April.

    And LW, those first four months of 2016 were so hard. If Dad was in the hospital, someone had to be with him every hour of visiting times. If he was at home, someone had to be in earshot at all times. He got extremely picky about what he ate, got grumpy, got mean, got sad, despaired, lost his sense of humour. I used to dread coming home from work, because then I’d find out exactly how bad it had been, and it would be my turn to step in so my mother, sister or other friend or relation could have a moment to themselves. We didn’t know, when he got sick, how long he’d have. We were faced with the numbing prospect that this was the shape of the next decade of our lives. As it happened, we didn’t have to bear it for even four months.

    And, you know, some things are better now? There isn’t constant sport on the TV. The dog has a dogsitter now and is fussed over every minute she’s awake. We can go to cold places on our holidays. My mum might finally get to move to her dream house.

    But even with all that said, I would give anything to have my Dad back. I would offer myself up in his place in a heartbeat. There is nothing in the world I want more than to ring his old mobile number and hear him greet me by his old nickname for me. Nothing at all.

    I wanted to tell you this in case you’re also feeling guilty or judged for what you feel about not having to stand this for long – for having that “well, he’ll be dead in five years, I can put up with it for that long.” I felt so guilty about being relieved after Dad died – I still do now. But it’s a very common reaction, especially in cases of a loved one with a long and/or extreme illness, and none of that means that you don’t love them, that you want them to die or that you wouldn’t take away their pain if you could.

    You sound, from your letter, that you’re strong-willed and (on the surface at least) coping with this admirably. But caring for a dying person is so emotionally fraught and complicated, and I just wanted to tell you that you are completely normal, that this is a common reaction, and that no one has the right to judge you for it. These were things that helped when they were said to me, and I wanted to pass them on to you. All the love in the world (Jedi or not) ❤

    • Allya said:

      I want to second this. My mum and her sister were extremely close, and when my aunt was dying, she relied on my mum for support a LOT. It was hard for everyone, but especially for my mum. My aunt got really needy and demanding, and it meant mum didn’t have a lot of time for her kids (we were all teenagers at the time) or for herself. It made me so angry sometimes, I could see what a huge toll it was taking on her. When my aunt finally did pass away, my overwhelming feeling was of relief. Grief came later, but in many ways I was grieving for the person she had been before her illness wreaked havoc in her life. I think my mum felt the same way.

      Just because we were angry and maybe resentful doesn’t mean we didn’t love her. It’s such a hard thing to go through, it can be messy and complicated and painful in ways you might never have expected and you’re allowed to have any kinds of feelings about it. You’re not a bad person. You deserve to have your own needs met too, you deserve to be supported, you deserve to be happy.

  32. LW – Right now, you have two people that are making demands on you in ways that are playing you against each other. Currently, Jon’s demands are easier to meet because you’re rewarded with something more pleasant than caregiving for a chronically ill and unhappy person when you meet them. That said, the entitlement to make those demands hints at a type of control that’s causing you a lot of pain and still will. You can’t make Jon happy without hurting Wolfie, and vice versa. Where are you in this allowed to say, “I’m struggling a lot with care-giving and managing all my commitments. You’re both asking me to do things that allow no compromise and cause me a lot of stress. What’s that about?”

    When we have thoughts wishing that something dramatic and final and out of our control would happen, particularly something like the death of someone we love, it’s because we aren’t feeling a lot of agency to build the kind of life we want. We feel helpless, so we put it on the universe to throw a Hail Mary pass. Pinning your hopes on something changing so you don’t have to change is soothing in the same way procrastination is soothing – it says, “hey, maybe I’ll do nothing and this will all work out awesome.” I have been there.

    Other commenters and Cap have done a great job poking at that hypothetical – Wolfie could outlive YOU. You could get unexpectedly ill and need caregiving or become unable to have the same “future life” you’re envisioning. Jon could get ill or decide that this is taking too long or maybe turn out to be not who you think when/if Wolfie is gone.

    Cap has given you some good baby steps in the direction of self-care, but I’ll add to that – a supportive and loving partner is not one who issues demands that will cause you hardship and then leaves you to figure out all the logistics.

    What would it look like if you stated your needs to both of them and enlisted their help and support in ensuring you also get what you need. Not in a “lay all your problems at their feet with no solution” type of way, but in a “hey, I need you to understand what you’re asking and what I need matters, too,” type of way.

    Try, “Jon, I have such a great time when we’re together. It’s a nice break for me, and I’m fine to come solo. But I want you to know things are difficult with Wolfie right now. I’m working on easing that burden, but I just need you to understand that managing that is going to be a big feature of my life. Until/unless I decide to end that relationship on my own, I need our interactions to respect the space that’s taking and not focus on some future time when he’s gone.”

    Try also, “Wolfie, I’m going to head off this weekend so I can clear my head and I’ve made arrangements so you’ll get what you need. I love you, but I’m feeling like suddenly this is a much bigger deal than it was in the past. If you’re having new anxieties or wanting to re-negotiate the terms of our relationship, I’d prefer for you to be direct. If you can’t talk about that without threatening divorce, then that makes me sad, but I need that conversation to happen and I’ll tell you I can’t be threatened out of it.”

    It’s really hard to stand up for yourself with people you love, but it sounds like all of your needs have been squeezed out of this situation so you’re doing 100% of the emotional and physical labor to make sure everyone else gets 100% of what they want and getting 0% of what you need in the process.

    I’m rooting for you. This is tough stuff. Sending love through the wires.

  33. kourei said:

    While I agree with all the commenters who have talked about making your own medical needs a priority and getting help with Wolfie, this jumped out to me as well:

    “We’re also kinky, both dominants …… Jon wears my collar.”

    And it sounds to me like Wolfie and Jon are both a little high-maintenance at the moment, and now you’re a dominant who finds herself in the position of having to serve both your partners outside of play time. As part of your self-care, have you considered finding an additional play partner?

    If you negotiate five days a week with Wolfie and two days a week doing whatever you want, as suggested above, spending some of that time with a new sub might help you feel more like yourself. The relationship with your new sub could be light and fun and not so emotionally fraught. If I were in this situation, I’d look for a female sub just to get a break from gendered expectations.

    Good luck with everything, and I hope you are able to recover your happiness.

    • No. Just no. I think most subs would really hate being the recreational side sub in a poly triad with this much going on.

      A bottom play partner for scenes, maybe. But
      Subs are not a source of free and easy sex/company/housework. We have emotions. We have needs. Many of us long for the same relational investment as any other person. I don’t serve anyone indiscriminately. Submission isn’t gendered and your crude distinction between what a male and female sub would need us insulting. It’s insulting to think of Doms picking up new subs just to take the edge off.

    • neverjaunty said:

      Wow, no. “Situation fucked up, add more people” is a poly joke for a reason.

  34. MoSaurus said:

    LW, at the risk of sounding harsh I am hearing alarm bells about the pattern of behavior between you and Wolfie. I don’t know what Wolfie’s intentions are: I think other commenters have done a great job of identifying that he is scared, tired, and in pain. However, using threats to influence your behavior, dismissing your needs, and guilt-tripping you for wanting solo time are all forms of emotional abuse. Nobody deserves to be abused, no matter the reason that’s driving the abuse. I’m pointing this out because I think it’s important to recognize the behavior for what it is so you can effectively set boundaries. It also means you may be able to seek support from a local domestic violence agency in the form of counseling, support groups, or other resources (some agencies can offer those things at very low cost or for free). I hope this is helpful; please disregard if it is not.

  35. Bartleby the Caregiver (aka Bad Caregiver) said:

    You mentioned not having a lot of money to throw at problems, so a professional full-time caregiver is likely out of the question. Is it possible to hire an inexperienced college student to come for an hour or two a day to help out for cheap? Even a little respite is … well, it’s not nearly enough, but it’s better than nothing.

    I’m hoping somebody else has good suggestions for what to do when the person you’re taking care of doesn’t say thank you. I’ve talked about this issue with my boyfriend, and that improved matters somewhat. But when he’s low on energy, he doesn’t think to thank me, or he doesn’t have the strength for those two extra words, or he has to use the spoons he has telling me what I’ve done wrong in the course of doing something for him. No advice, but all the empathy.

  36. Dear theladyherself1971,

    The more I read what you’ve written, the less sustainable your situation seems.

    Maybe because you’ve been partnered to a dominant, much older man your whole adult life, it’s not clear to you how out of line some of Wolfie’s demands are.

    For example:

    – It’s not ok to forbid your partner time for their own activities (gym).
    – It’s not ok to commandeer all the transportation on the grounds of “I might use it later.” (It’s not ok to commandeer all of any resource actually.)
    – It’s not ok ( or sustainable) to be the only partner who needs care.
    – It’s not ok to threaten divorce in an argument (It is ok to point out that divorce is a logical consequence of some action. The two aren’t the same.)

    I think you’re so used to acceding to Wolfie’s demands that you can’t imagine negotiations or boundary settings. Nonetheless, both boundaries and negotiations are possible.

    I think in the immediate term your needs must be addressed.
    – You need surgery
    – You need rehab for surgery
    – You need time off

    All the Jedi hugs if you want them

    • wasabigrrl said:

      Agree with the above (and so many of the other commenters as well). LW theladyherself1971, as I understand your situation now, you rely on your husband’s disability for income and shelter, have no separate income, have a chronic disease and a short-term condition that requires surgery, and are barred from exercising autonomy or self-care. He hoards shop tools, “maker” supplies, motorcycles, and attention while you do without. He is allowed to bar you from leaving for self-care activity. He threatens you with divorce, which I read in this context as threatening you with LOSS OF SHELTER AND INCOME, if you stay with your approved second partner during recovery (I assume staying with your mother is not feasible).

      Add to this worrisome patterns that predate his 2015 health crisis, and my earlier suggestion about modeling communication seems… inadequate.

      Some positives I see in this situation: your eldest son is out of the house, the youngest is stably housed with your mother, you are self-aware enough to reach out for help on this forum, you are intelligent, and you are able-bodied enough to relocate from the house if necessary. (I’m not counting Jon as a positive because this is about you, yourself, and yourself as it relates to your marriage.)

      I do understand the barrier of poverty. Perhaps you could start listing some of the stuff in the basement on Craigslist? Perhaps he could sell a gun or a shop tool to pay for short-term care in your home while you recover from surgery? A loving partner would make that happen. Hell, I’ve sold my possessions to help fund medical care for people I wasn’t even dating.

      I second the suggestions of finding a disability lawyer, finding an Al-Anon meeting, seeking sliding-scale therapy or advice from a battered women’s center, putting what you can by in a bug-out fund, and starting to draw some kind of boundary with your husband’s demands. Starting with prioritizing your own pain and countering the divorce threats with willingness to call his bluff.

      No amount of ill health absolves ‘I will divorce you if you go stay with your other lover during surgery and aren’t here to fetch my tea.”

      I wish you the best.

      • Selling the stuff in the basement is a very smart idea

      • B. said:

        I’d totally forgotten about the guns. In light of everything else, I find it extremely worrying that Wolfie has access to guns. What will he do when “I’ll divorce you if you dare have surgery” no longer works?

        LW, is there any way you could remove Wolfie’s access to the guns? Maybe by selling them without his knowledge? Maybe by rehousing them with Jon, again, without Wolfie’s knowledge?

  37. My grandfather was diagnosed with congestive heart failure at age 50 something along with diabetes…and he lived to be 97, surviving three different kinds of cancer, too.

    Granted, he faced the diagnoses and changed his diet dramatically, and exercised and and and

    But are you ready to live with him AS HE IS for the next 40 years? Are you willing to put off your own needed health care for the next 40 years?

    Get your foot taken care of before you do anything else, put on your own oxygen mask first.

  38. Cyberwulf said:

    The more I think about it, the more I hope LW just hasn’t told Jon and her sons that she needs foot and ankle surgery. Because the thought that these three able-bodied men would allow her to go around in pain bad enough to make her cry without saying “For fuck’s sake Ma, go and have the surgery, we’ll help you” is absolutely rage-making.

    And LW, if your younger son is living at home, why are you doing the dishes? Dishes for three people doesn’t take that long. He can do them between his English and Maths homework. I’d say that even if you and Wolfie were healthy. M is for Mother, not for Maid.

    Boundaries are important. But there are times in a family when it’s all hands on deck. Like when your partner/mother needs surgery so that she isn’t struggling not to cry in pain while her husband sits in the kitchen shouting at her for ketchup.

    • He lives with my mother. So he’s not there to do the dishes. He would if he were there. But I can’t ask him… or his older brother…to drive across town to do my dishes.

      • Cyberwulf said:

        Fair enough, and I saw elsewhere you said Jon suffers from scoliosis. But LW, why can’t you sit down with Jon and your sons and say “I need this foot surgery and I need all of you to suck it up while I’m on crutches”? Why can’t your eldest son come by and push a vacuum around in the evening while you’re incapacitated? Why can’t Jon pitch in for outside help while you and Wolfie need care?

        The more of the picture you give us, the more I think you should leave Wolfie, or at least call his bluff. You have one man who thinks you should cripple yourselfin service of his needs, and either you’re okay with it on some level, or the other men in your life are okay with it.

      • vaurora said:

        Just curious – why does your high school age son live with his grandmother?

        • The Bucket Splash said:

          Maybe b/c LW has zero emotional real estate for them?
          In a very few years, they’re going to be the needy, enraged puppy-dogs I used to be attracted to. The relationships were centered on alcohol and fights over, “I don’t know what you want from me!”
          But they’d learned it at home. They’d tell me, “My parents wouldn’t even look at us. They weren’t interested in our lives or school. We had to take care of ourselves, find our own food and clothes. Every day I’d come home from school and wonder if there’d be any food, or what strangers they’d go out to be with that night. We’d wake up to find we’d been alone in the house all night, and have to find something to eat before school.” -Ah! Exactly like me! I’m also needy and enraged! ~Soulmates!~

          And it’s like a therapist said to me later, “This is when one-half plus one-half do not equal one.”

          Run the vaccum in a house they were pushed out of? Those boys don’t owe their parents zip. I’m glad they have other family. Even if these parents do try to make amends later, it may be too late.
          Adults can absolutely be poly and kink without being child abusers.

          • Until and unless we hear something from the LW, this is baseless speculation phrased in a very cruel and unhelpful way.

          • Turtle Candle said:

            @noveldevice Thank you, yes. One of my cousins lived with my grandparents for high school simply because they were 15 minutes rather than 2 hours from his magnet school. There are a lot of reasons it can happen.

          • The Bucket Splash said:

            LW refers to them as being “Wolfie’s kids” and “out of the house” when one is a school-age minor. Others have queried why and who the parents were and LW’s answers are above.

          • The Bucket Splash, seriously – are you still seeing your therapist? Because that was … very tangential, and very angry, and not at all supported by the evidence. If your anger at your past is coming out this much with this little provocation, I think you have more to work on. I’m not saying this to score points, but you don’t sound like you’re ok.

          • Cyberwulf said:

            Oh yeah, the younger son should be at home, watching his father treat his mother like a dog. That would have no damaging effects on him at all.

  39. Anon_for_this said:

    I hope this is not to personal to ask you, but as a fellow female dom I asked myself how you got to play with Jon when Wolfie spends the weekend with both of you? Do you just leave the room for some private time with Jon? Do you play in front of Wolfie? Does “Wolfie spends the weekend with us” mean that you may give some commands to Jon but don’t have any room for more intimate play?
    Because even with a casual play partner, I find time alone together crucial. I can’t imagine my gf joining every date with my sub. That’s just not how it works. (Even though they are close friends).

    • When you are poly and have a small house, you get used to your partner taking their other partner in the bedroom, ignoring any noises, and waiting til they come out in a couple hours. That’s never bothered him, assuming that he was getting my time and body on other occasions.

      When he’s at Jon’s with me, at a certain point, I make sure he has his soda and is settled with a movie and go upstairs with Jon. For a long time, Jon came up to where I live, took me out for dinner, took me to the park or the mall (weather dependent ) to walk around and talk and let the meal settle, and then we went to my house and scened and had sex. A lot of what he kinks for is sexually based (T & D, etc) so that works fine.

  40. Lady, my heart goes out to you. *hugs from a stranger, if you want them*

    I want to urge you not to feel guilty for these feelings you’re having. This is an incredibly stressful situation and “waiting for Wolfie to die” is a very human way to try to exert control over the situation. It’s scary when a loved one is in mortal peril. It’s scary when that impending death is tied to the upheaval of your house. (“I have exactly 30 days from finding the body to clean and sell the house! Must be poised with readiness at all times!”) It’s scary when you don’t KNOW how long you have. The situation is scary and infinite, so we humans impose a finite boundary to feel calmer: “This terrifying situation will last no longer than five years” is a coping mechanism, not a signal that you don’t love your husband.

    Having said that, and I say this as a disabled partner who relies on my spouse a LOT (yes, even for socks and shoes), I just……. need to remind you as one more voice that you don’t HAVE to stay with Wolfie. You don’t. You get one life to live and nobody is going to give you a shiny medal for 5, 10, 15 years of perfect service. You’re allowed to drive into the sunset with a sexy man who does laundry with you and lets you have foot surgeries you need and doesn’t browbeat you from going to the gym with the truck. You’re allowed.

    Yes, Wolfie is disabled. So I am. Wolfie is also treating you in ways that appall me. I’m sure he’s loving in his own ways, I’m sure there are reasons you’ve stayed, I’m sure there are things in your relationship that aren’t terrible, I’m sure I’m only an internet stranger hearing the hard stuff and I don’t understand the value of his smile or the way his eyes crinkle up when you tell a joke. I know. But. Still. Lady. This partner is not treating you well and I hurt for you, and his being disabled is not an excuse.

    I cannot *imagine* barring my partner from necessary surgery because he wouldn’t be able to take care of me. I would be looking day and night for a solution that would enable him to get this care. YOU shouldn’t have to be looking into caretakers so that YOU can beg permission from him for necessary medical care, my god. A loving partner would be doing that WITH you already, working out how you can get relief from pain. I saw you say that he plays one-upmanship with pain, too, and I just… Lady. Lady, this is not okay. None of it is okay.

    You’re kinky and you’re poly; so am I. What would you tell me if I wrote you situation down as though it were happening to me and not to you? If I told you that my Dom wasn’t letting me have foot surgery because I wouldn’t be able to service him? If I told you that I’m in tears every day from the pain and my Dom knows I hurt but he doesn’t want to go six weeks without me waiting on him? What if I told you that whenever I tell my Dom what I need, he threatens to divorce me? That when I try to use my words or negotiate boundaries, he gets angry and yells and threatens to leave?

    And, yeah, okay, you’re not a sub, you’re a Dom, too–but that doesn’t mean you’re magically immune from a dominant exerting unfair control over you! If I could urge you to read all this as though it were happening to someone else, and not to you, I think it might shock you just how much you’re putting up with that….. you don’t have to? It’s hard, I know, to leave someone who is ill, and yeah, there’s some social stigma attached to being the spouse who didn’t suffer nobly by her husband’s side. But you’re being hurt by someone who is supposed to love you and NOT hurt you, and you don’t get a medal for toughing that out.

    Be safe, Lady. My thoughts are with you.

  41. neverjaunty said:

    LW, as others have noted, outsourcing the emotional labor of ending a marriage to the Grim Reaper is not a plan. It’s wishful thinking, and quite understandable from an exhausted caregiver, but it’s not an actual plan for fixing your situation.

  42. Aris Merquoni said:

    LW,

    After reading everything you’ve written on this thread, I have this advice:

    Schedule the surgery. Plan on going to Jon’s to recover. If Wolfie threatens to divorce you, lawyer up and let him.

    Your needs matter more than your marriage. Your health matters more than your marriage.

    Jedi hugs and good luck.

    • This is a good point. Wolfie keeps bringing up divorce. You actually want to be out of the situation he’s putting you in. So what do have to lose by calling his bluff? Either he actually means it, in which case he’s more confident in his ability to do without you than he’s letting on and you can get out while he’s still alive, or he doesn’t, in which case it’s time you took that tool out of his kit by making it clear that it’s not as much of a threat as he thinks.

      Think it through. What would happen if you simply state that your getting surgery is non-negotiable and that the only question you’re prepared to discuss is how to make sure he’s supported while you recover elsewhere – and then if he threatens divorce, say, ‘Yes, that is an option I’m prepared to discuss if you keep blocking me from getting the treatment I need?’ Sometimes it’s necessary to remind somebody that sick or not, your presence in their life is conditional on them treating you with a minimum level of decency.

      Clearly you’re a compassionate person, and it sounds like Wolfie has been taking that for granted. At this point … well. Self-care is one of those things that caregivers often get told to prioritise, but the plain fact is that if the caregiving situation doesn’t allow for it, then it isn’t possible. (At which point it sometimes starts to feel like you’re just being told to take on yet ANOTHER load.) When that happens, it’s all very well for outsiders to say, ‘Ah, but you need time to yourself too,’ but in reality, the first thing that has to happen is for the structure of the situation to change. Self-care can only take place in a situation that allows for it.

      Sometimes the thing that makes it impossible is lack of resources or support, but in your case, the thing that’s making it impossible is Wolfie. His medical needs would make things difficult, but not so difficult that self-care would be impossible. What’s making it impossible is his behaviour, which he could change if he really tried, and perhaps you need to draw some hard limits in order to make that happen.

      If you need a compassionate framing, then it’s not in his own interests to drive you until you collapse.

    • Aris Merquoni said:

      A slightly longer comment on this, now that it isn’t the middle of the night:

      LW, the more information about the situation that came out in comments the more worried I became. When the situation was “I’m worn out caregiving, but I think my husband will pass away soon so how do I hold onto my life while this happens,” the answer is “Carve out some time in your life to sustain yourself.”

      That’s not the situation you are in. The situation you are in is that you need urgent medical care and your husband is demanding you not get it so that he won’t be inconvenienced.

      The surgery for your feet is important and urgent. Feet need attention. If you’re being Wolfie’s legs your feet need to be in top shape. Just for yourself, you deserve to stand without foot pain. By demanding that you put off your surgery, Wolfie is literally injuring you. He is literally costing you money. He is literally putting you in pain. He may not be twirling his moustache and strapping your legs to a train track, but he is causing you medical trauma all the same.

      You deserve better. You deserve to not go into the doctor’s office in five years (?) and find out that your feet now need twice the surgeries for four times the money and half the chance of a positive recovery. You deserve to be pain-free now. Today. Tomorrow. In six weeks.

      Jedi hugs and good luck.

      • The Bucket Splash said:

        This! The new version of surgery might be removal of the feet, from circulation atrophy or thrombosis.

  43. SLB said:

    LW, are you familiar with the phrase “You are not obligated to light yourself on fire to keep someone else warm”? Because you are in the center of an inferno right now. My heart hurts for you.

  44. gryphon said:

    Just commenting to say that the Captain’s description of her grandparents made a lightbulb go on in my head. My grandfather also tended to do that thing at mealtimes of needing something just as everyone else had started tucking into their food, so someone had to stop eating to leap up and get it for him. And my grandmother also tended to be really bad at sitting down, to the point where she’d get several people practically yelling at her to just sit down. And I never connected the two behaviours until today! (When my immediate family were around, it was always a younger person who did the jumping up and fetching, so I never really thought about what happened when we weren’t there.) I wonder how common this dynamic is.

  45. vaurora said:

    LW, the story you have planned for yourself is that of the loving faithful noble wife who cared for her disabled husband until he died, and then went off to live her real life with her second love with a clear conscience. To achieve that story, you are willing to sacrifice your health and happiness for an unknown period of years.

    What if you considered a different story? The story of a loving faithful noble wife who bent over backwards to fulfill her marriage vows for a man she loved, and one day woke up to the reality that her husband had stopped attempting to fulfill his marriage vows long ago. A woman who started going to therapy, who cared for her own health the way she cared for her husband’s, who valued her own self even a tenth as much as she valued her husband. A woman who cried and was deeply sad when her divorce was final, but a year later glowed with happiness and vitality every day. A woman who could sincerely mourn when the ex-husband she still cared for died, rather than guiltily hiding her jubilation.

    That’s the carrot, here’s the stick: if your husband threatens to commit suicide in order to control your actions, that’s full-on 100% not-a-joke very bad dangerous abuse. If you read this blog, you should know that is a giant red flag for other kinds of abuse above and beyond the ones you’ve described (denial of medical care, controlling transport, etc.). You are currently more worried about him killing himself, but murder-suicide or just murder is quite common in this situation too. You may have hidden the ammunition you know about for your husband’s guns, but he can easily get more or have some already hidden.

    There’s more than one ending to this story. You have some control over which one it is.

  46. The Bucket Splash said:

    I’ve been sober almost four years, and only go to AA sporadically. I’m no poster child for it and yet, I’m happy being sober and alive today. So, some tough talk for LW, as it will likely save some lives.

    You’re attracted to alcoholics. Their selfish demands feel normal to you. Jon didn’t develop a drinking problem last fall; that’s when it came to the surface. The factors were present long before.

    Many arguments can be made regarding AA. A lot of people put their butts in those crummy chairs and show up to help another alcoholic, not b/c they’re perfect, but because it keeps their own self from drinking. The rooms fill with ghosts of people who didn’t.

    You’re neglecting your own health to “save” these men, so by not helping yourself, you’re showing them you don’t believe your own actions.

    Enabling addicts keeps them sick and helps kill them- or innocent others when the addict relapses into drink, and gets behind the wheel.
    Jon needs a lot of AA for his first year. He needs a male sponsor, not a new relationship.
    If that idea frightens or triggers you, that’s something you need to examine more closely.

    If a sex cloud that kept us from touching the ground would allow us to keep drinking without consequence, a lot of us would still be in it today.

    Addiction is so weird. It makes everyone the same dull, lethal monster. All the stories are the same.
    Sobriety is so different. People become themselves.

    If Jon’s important to you, and Wolfie’s quality of life matters to you, back off from your co-dependency and use the time to get your own self straight and healthy. Then you can be a real parent and partner, whether it’s to these men or to new partners who aren’t dry drunks.

    • mindovermoneychick said:

      This is so insightful. The comment about Jon getting sober last year made me uneasy but I couldn’t pinpoint why. This is articulated what was niggling in the back of my mind. LW you have so much on your plate, if at all possible I would prioritize your surgery above all else, but once you’ve got that handled think seriously about what Buckley Splash said.

    • B. said:

      I believe that you want to help, but your accusing the LW of enabling, again, without any evidence present that points to her enabling others, is instead cruel and unhelpful.

      The rest of your comment has too many mean and condescending items to list.

      You have your reasons to be angry, but the LW is not an emotional punching ball for you to get angry at. Get a grip on your temper, please. Stop judging people you don’t know. You are not helping anyone like this.

    • I agree that Jon’s alcohol issues are a complicating factor, but AA is not his only choice, and there are arguments that it’s actually less effective than other methods. (https://www.theatlantic.com/magazine/archive/2015/04/the-irrationality-of-alcoholics-anonymous/386255/, for instance.) If it suits him, fine, but if it doesn’t, it is okay for him to look at other methods of staying sober. He needs a method that works for him, and that may or may not be AA.

      It is a fair question, though: can you see yourself in a situation where you could either live alone, or with someone who didn’t have addiction or health problems? Do you see yourself as somebody good enough for that?

      • (I don’t mean by this, which I should have been clearer on, that you shouldn’t be with Jon. If he’s put his drinking problem in the past, then kudos to him. I only mean it’s worth considering how spending your whole adult life with a very demanding man might shape your view of your options.)

    • Wow. Just. Wow. Am I correct in saying that, according to you, it’s the Lady’s fault that Jon is an alcoholic and that she will be to blame if he relapses, gets behind the wheel, and kills an innocent pedestrian or carload of strangers? And, furthermore, you are saying she is responsible for his and Wolfie’s actions because she is keeping these poor men in a “sex cloud” by virtue of being a kinky/poly woman?

    • JenniferP said:

      This seems like a good time to close this commenting thread. I’m glad you’ve gotten help from AA. The fact that Wolfie and Jon both have alcohol problems is…interesting. But you’re projecting all over the LW here, and it’s not okay.

  47. Tennia said:

    LW, from everything you’ve said, your husband is drowning you in order for him to not drown. And that’s not acceptable.

    The thing is, you could die before him, or he could live fifteen years. Banking on him dying before you and/or in a timeframe where you can still deal with his unacceptable behaviour is a really, really bad gamble. What would you do if he lives six more years? Ten more? Can you really stand it that long?

    The fact that he is denying you surgery makes him an active threat to your health. The fact that he endlessly threatens divorce over small things as a way to control you means that ultimately you have to call the bluff or deal with this same hideous rut over and over again until he dies.

    How badly is seeing their mother trapped in this kind of marriage affecting your children? How badly is it hurting you?

  48. B. said:

    Dear LW,

    Your finances and housing depend on a man who threatens to leave you destitute if you dare have a surgery you need, who controls your movements and transportation, who keeps you from having access to healthcare and self-care, who is emotionally abusive to you, and who has access to firearms and dangerous tools.

    Please, call a DV helpline. Please. Even if it’s just to talk in real-time with a nice non-judgemental person who will listen to you.

  49. ioethe said:

    For the day to day management of your situation –

    Privately, by yourself, write a list of things you KNOW Wolfie can do. He can pick up a fork. He can fix himself a soda. He can put his own socks on. Things he can clearly do because he can do them while you’re away. Think hard about these things and whether your really, truly believe he is capable of doing them. This is the time to get out all of your angst and worry and love and concern for him. The List is Fair. The List is Reasonable. This is your List To Die On.

    When Wolfie asks you to do one of these things, say no. Just no. Don’t apologise, don’t explain, don’t feel like you are doing something wrong. He can do that. You know he can. He has the capacity to berate you for not doing it, he’s got the capacity to do it for himself. If he starts to berate you, get up, and go into a different room. If he has the capacity to follow you into a different room he has the capacity to pick up his own socks.

    Make asking you to do it more trouble than doing it himself.

    • There is a way this could really backfire: Lady herself says she’s capable of doing certain things, but only once, and then she’s exhausted. What if this is true of Wolfie? Or what if it isn’t, but he’s good at pretending it is? (She already said that he has to top any problems she’s having, so it’s unlikely he’d let her have sole title to the ‘finite energy’ problem.) Is he the kind of man who would retaliate against her when she was in a weakened state?

      I’m not saying she should never say no to him, but it’s a factor to consider in making any plans.

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