Season’s felicitations, Awkward Army! Elodie Under Glass here with two letters about accommodating your loved ones during stressful celebrations. Goodness, could this be a TIMELY POST? Here’s Letter #1.
I have a weird situation going with my dad. There’s a lot of history here so I’ll try to be brief.
When I left for university, mom took that as her chance to quit the soul sucking job she hated and move her and dad to the other side of the country for a job she loved. Five years later, a couple months after I graduated, she went to sleep and never woke up. It’s been three years since then.
I’ve spent every holiday and Christmas with my dad since, including one where he joined us at my in-laws place, because I don’t want him to be alone. But he’s got it in his head that I should be adjusting my life to accommodate for him more. The first time he bitched the entire time about our apartment not having a guest room or an elevator to the top floor where we lived. He’s got MS and walking is hard, stairs are worse, and a lumpy couch is a crappy bed even if you’re healthy, so I sympathized. But he complained every other time too even though I warned him that nothing changed.
We recently bought our first house, and he came to see it. Because we’re kind of poor, it’s a real fixer – upper with three floors and no railings. I warned him and he said it was fine… but then complained constantly about how we keep getting these places with all these stairs. I spent the whole visit basically carrying him up and down between floors.
I work in construction so I’m not allowed to take time off. The two weeks I get over Christmas are the only rest I get for the year. This year, I really want to spend it just me, husband and cat. But when I suggested I wanted a quiet Christmas he just assumed he was part of that. How do I tell him I don’t want him here all the time, that it’s not quiet and restful for me when he’s here, without hurting him? I already feel super guilty for thinking of him as a burden.
A Terrible Daughter
Dear Terrible Daughter,
I want to say that I know how hard it is to open your home and your heart to parents who seem to take pleasure in criticizing your adulthood.
I know what it’s like when you clean up to the best of your energy, groom yourself to the point of snapping a proud selfie, and cook with the finest things you can afford… and instead of appreciating these gestures of love and respect, your parents comment that you’ve ruined your hair, that they don’t like your weight, and they don’t see why you live in this dump. I know that this stings like a slapped face, and that for days afterward you’ll be probing this hurt, feeling around its edges like a bruise, unable to let it go. “This little world you’ve built for yourself is total crap!” is never going to be something you’re grateful to hear.
So I know that when you strive and struggle and spend energy to be with your father at Christmas, when you’re at the end of your money and energy and your ability to take blows, and he shows up like “Your house. I don’t like it” …
… Well, it’s not exactly easy to go “Wow, thanks for that totally constructive criticism, Daddy, gosh, I will absolutely take all of YOUR feelings on board when I just casually BUY MY NEXT HOUSE.”
I know. I get it.
I get how hard it is to move past “being fucking pissed off” into the sphere of “calm, generous and forgiving daughter.” And I know, that with our societal narratives of daughters being pressured to be all-forgiving and all-loving and never-outraged, that this anger is something that insulates and protects your boundaries. I am not angry with your anger.
So we need to talk about how you are being kind of a jerk about your father’s disability. He isn’t being disabled at you. When he complains about your house having stairs, he isn’t complaining because you’re The Worst Daughter Who Bought A Bad House and Should Feel Bad, he’s complaining because your stairs hurt him and cause him pain.
There’s a thread of ableist thinking in your letter that will improve your life to examine. There’s this idea that disability is a burden, that accommodating disabilities is “extra work,” and that disabled people are being deliberately annoying by existing in the same spaces as you. It’s a very common form of ableism in our society, and it’s insidious. When you read LW #2’s letter, I hope that it’ll be a kind of lightbulb moment for you, but for now, addressing your ableist thinking is something I’d like you to take on as homework.
If this is a completely new set of thought for you, please start with a nice 101-level thought exercise about how our concept of “disability” is societally defined. A “disabled” person isn’t an inherent scientific definition; they’re someone who isn’t “able” to conveniently use the world we’ve constructed. But we, people, have deliberately constructed a world that excludes people. And we’ve done it rather thoughtlessly.
Think about how nice accessibility ramps are for anything with wheels – whether you’re trying to move wheelchairs or walkers, or baby strollers, or mop buckets, wheeled luggage, bicycles, paramedics with stretchers, hand trucks, wheely shopping baskets, heavy pieces of equipment or whatever. Nice rampy slopes are a preferable alternative to stairs for huge swathes of society doing diverse amounts of things – and we’re not even talking people with canes, injured people, toddlers, even Elodies who are afraid of heights…!
Yet society acts like accessibility ramps are this massive obstruction to the “normal” flow of life, granted to those ungrateful disabled people by the Politically Correct Police, at the expense of the happiness of Normal People. So that’s something we need to learn here, Terrible Daughter. Ableist culture can take something as universally pleasant and useful as an accessibility ramp, and get angry about it because it reminds us that some people don’t use stairs. Meanwhile we’re apparently forgetting that we invented both ramps and stairs for our own convenience, and there is no natural evolutionary reason why we should be so obsessed with the Righteous and Proper Use of Stairs. See also: disabled parking spaces. See also: most forms of accessibility and accommodation that remind able-bodied people not to make assumptions.
Basically, I want you to realign whatever justifications you’re using for giving a lumpy sofa bed to an older person with chronic pain, and understand that accommodating disabled people is not a cause for glorious martyrdom, but a simple part of living in this world.
If you want your dad to visit you, LW, you have to accommodate him, and you have to let go of this idea that accommodating him is an inconvenience. Just like you ought to feed your guests and let them use your toilet, you ought to make sure that your dad can move around your home. If you want your dad to sleep in your house, you will have to provide him with a comfortable bed on the ground floor, even if that means moving your furniture around and sleeping on the couch yourself. If you see “Dad visits” as an important part of your future life, you will have to make sure that he can access the bathroom. If you want your father in your life, you will have to help him up the stairs.
Otherwise: go visit your dad instead. Otherwise: put your dad in a bed and breakfast. Otherwise: build a comfortable yurt in the backyard. Otherwise: sell the house. Otherwise: don’t see your dad.
The problem here is not your father’s pain. Carrying your father up stairs is not a burden. It is the job of one who has both stairs, and a loved one who cannot use stairs.
When Dr Glass and I were buying the narrowboat that we now live on, we went into every potential boat with our hands held high over our heads, fingers brushing the ceilings. Many narrowboats have low ceilings, and as a charmingly travel-sized couple, we were aware that all boat ceilings would work for us – but that we would also like to have our awkwardly tall friends and family be able to visit our future home. We bought an expensive futon that would sleep a six-foot-plus person, because the other bunks are for Glass-sized folks, and some of the people we love are over six feet tall. We measured the narrow and awkward corners to see if our wider-hipped friends – and possibly future pregnant people – would be able to walk around our boat. We wondered, “what if a baby happened? How could we accommodate a baby on this boat?” and “If one of us broke a leg, could we still get through the engine room?” and “if one of us died, could the other single-hand it?”
This is what you ask yourself, when you’re making big decisions like marrying, purchasing homes, planning degrees, making babies, moving to different places, getting pets. “Will this choice be good for me now – and will it be able to accommodate the ways in which my life will change?” And your life will change, Daughter. Your dad will certainly die, just as it is certain that your job will end, that your cat will get sick, and your husband will age and one day become infirm. You bought your house, knowing all of these things, because you believed it was the best choice for your life.
Your dad is right: knowing that he has chronic pain and limited mobility, you consistently offer him really bad houseroom.
And LW … you really don’t seem happy about doing it. You’re making pro and con lists of having him in your house. You complain about helping him up the stairs. I kind of wonder how much of a loved one the man really is – and that’s okay.
So I want you to take apart your ableist thinking, sit with your pain, feel your feelings, run around the block with your Rageasaurus, admit to yourself that you really did choose a home that hurts your father and admit that you don’t seem to like his company very much.
I want you to sift through those feelings and whatever they bring up – even if they make you feel terrible – and see what you come up with.
It’s very possible that you will come up with the option where your dad just doesn’t visit you any more.
See, I’m approaching this letter with good faith, and I’m not seeing a lot of warmth and affection for your dad here – just your weariness. It could be that you wrote this on a really down day, but it sounds like you feel like your dad isn’t worth the effort of accommodating him. And you know what? He could be a massive jerk. His critical comments could come from him being a tired man in pain who gets things wrong when he’s hurting, or they could come from a nasty man with a long history of emotionally abusing you. I genuinely do not know. That’s your “lot of history,” that’s something that only you know.
Disabled people are allowed to be jerks too, because disabled people are complete people, not a monolith. And you’re allowed to draw boundaries about jerkish behavior. It’s very possible that your dad is a difficult person to be around – someone you genuinely don’t like, someone whom you find draining and upsetting, someone who disrespects you and exhausts you.
After you sit with your feelings, you might go “Actually, looking at everything – yeah, I do sound exhausted. Maybe my job is terrible for me, and it’s drained me to the point where I can’t even love my loved ones. Maybe it’s time to make changes.”
Or maybe you’ll say: “Actually, I just don’t want Dad in my home. I’d rather do a flying visit at his place in January.”
And you know what? That will be fine.
You don’t have to love everybody.
But you do have to make room for the ones you love.
Dear Captain Awkward
I feel like my partners family is choosing to exclude us from family events because we are disabled. Unfortunately, I very much doubt they see it that way, believing that my partner and I are ‘choosing’ not to attend family funerals that are five mile ‘memorial walks’ with no wake, Christmases that require us to drive for twenty hours within three successive days and holidays centred around long beach walks.
Due to careful management of our health and what often feels like a constant juggling act not to ‘overdo it’ and make ourselves (more) ill, my partner and I have a relatively good quality of life, and to casual acquaintances probably don’t appear disabled. Nonetheless, we are both disabled and often housebound, and have to spend days or even weeks resting ahead of something we want to do, like having friends over or going away for the weekend.
My partner deals with my in-laws on my behalf most of the time, but he is exhausted by them and increasingly alienated by the way they so rarely consider his health needs before making plans. This has lead to his parents accusing him of being kept from his loving family by me, and when he stands up for himself, he is told that it is my words coming from his mouth.
Now, my brother-in-law is getting married, and every idea I have heard related to the wedding sounds like something my partner physically can’t do – from the paintballing bachelor party to a full two-hour long Catholic mass to a destination wedding in a castle. Weddings are a lot of effort at the best of times, and high-energy event with a family with such a long history of minimising or ignoring both of our disabilities, I just know it will negatively effect my health for weeks or even months. My husband feels the same, but feels like the inevitable Drama and Friction of our not attending will be unbearable.
Have you any scripts for letting the family know in advance that if they book something we can’t do, we won’t do it? It feels like such a pathetic thing to ask, but they have well-and truly steam-rollered all my attempts to set boundaries.
Excluded by necessity, avoiding you by choice
(See, society? This is what excluding your disabled loved ones looks like. It looks like people deciding to give up on you FOR THEIR OWN HEALTH. Is it so fucking hard to think about other people? Is it so hard to believe them about their lives? Because your choices are fucking deliberate, and you seem to think you shouldn’t suffer any consequences for them, and I am calling bullshit on that. ANYWAY.)
I’m sure I’m not the first person to tell you this, and I regret that it has to be said, but you have literally married into a family of aliens. I’m really sorry, because this must be very difficult for you. BECAUSE LITERALLY NOTHING ABOUT THEIR ALIEN ACTIVITIES SOUNDS FUN.
And I can’t believe that you are the only person your in-laws are totally failing to accommodate, because the mental image I’ve received from their idea of Fun Family Celebrations is like that strange British tradition where people throw themselves down a cliffside in pursuit of a rolling cheese?
“And this Christmas got off to a great start when the cheese immediately brained a babe-in-arms – welcome to the family, kid! Aaaand we’re off! First to fall out is our weak-ass niece Pleura, who seems to be complaining about having just had a C-section. If you weren’t prepared to go hard on Christmas, then you shouldn’t have had major abdominal surgery, PLEURA. And there goes Aunty Moanie, who has stage three colon cancer but isn’t letting that stop her from enjoying healthy outdoor pursuits! Also doing well is Cousin Dave, whose prosthetic leg has flown off into the distance after the cheese, but good ol’ Dave is rolling down the hill anyway.
“Eighty-three-year-old Grandma Camela has always known how to participate in family adventures – look at her just fall down that hill in a tangle of brittle limbs! Oh, she says she’s fallen and she can’t get up. Well, that makes our inheritance problems a lot easier! Props to my brother Sarge, who is just straight-up punting toddlers down the hill – oh, shut up, Excluded, toddlers BOUNCE, they’ll be fine. What do you mean, it’s inappropriate? FAMILY EVENTS ARE ALL ABOUT INAPPROPRIATE AMOUNTS OF DANGER AND PERSONAL INJURY. God, Excluded, you’re such a negative person. It’s like you hate Christmas.”
SERIOUSLY, WHAT MAGAZINES ARE THESE PEOPLE READING? If you were seeking validation that these events sound AWFUL, then you have come to the right place. Alienating? I don’t even know these people and I’m uncomfortable sharing a planet with them.
Here’s some things that you already know, Excluded, because you seem to have a good read on these people:
A lot of this mess is your husband’s job to clean up, and when you say that he handles this “on your behalf,” it sounds like he’s generally trying to do it.
He seems to be the one concerned about the consequences of stepping back from the family – possibly because he’s more informed than you about what the fallout will be? Because the catching point here seems to be his anxiety about the possibility of “DRAMA” and “FRICTION,” which seems to override his apprehension about the pain/exhaustion that will definitely happen. (I’m a pretty conflict-avoidant person myself, but I’d have to be VERY anxious about people’s feelings before I drove for twenty hours for them, and I am able-bodied. I am feeling like there is some stuff happening in your husband’s head, there.)
It is slightly possible – I don’t know your exact situation so I’m just spitballing here – that setting boundaries with your family makes your husband feel terrible. It takes at least two surfaces to make Friction.
I think you know all of this, and I bet you’re being a really supportive spouse.
His family may never GET IT. And your husband probably knows this on multiple levels.
The thing that you have to do, Excluded, is figure out exactly how much of the Household Energy Budget is going to be spent on this, and how much of your portion of the Energy Budget you can commit.
Because all members of the household contribute to the Budget and draw upon it, you have some say in how your husband spends/uses his portion of it. But if he’s genuinely saying to you that “I have to spend a lot of our Budget this week on my family, because the alternative is spending all of the Budget to cope with my resulting anxieties” then that could actually be something that is Best For Your Husband … even if you hate every second of Catering To His Alien Family.
If he decides to spend his Budget on his family, it is totally okay for you to say “hahaha have fun with that (you won’t), but I have to sit this round out.”
The only script I’ve found that work for willfully obtuse aliens are the ones where you drill down, robotically and clearly, until you have all of the information. Then ask them how they’re going to accommodate you. Ask how they’re going to make their weird-ass plans work. Ask how they’re going to have you there. Ask “What will you be doing to fix this?” and “How will you make this work?” and “Where will the rest area be?” Like:
Alien: So for the wedding we’ll all be throwing ourselves off a cliff in the pursuit of a cheese! Isn’t that great?
You: Oh. Please describe exactly what this entails.
Alien: It will be literally flinging ourselves off a cliff.
You: Please describe exactly how tall the cliff is and how long we will be expected to do this.
Alien: … It’s a cliff? We’ll do it until we drop?
You: Please explain your plan for transporting the party to this cliff.
Alien: … walking?
You: Please explain how long the walk is.
Alien: … I don’t know, far?
You: Describe what hard standing there is, what seating arrangements there are, and what the people who are not jumping off the cliff will be doing. Will we be having a knitting bee?
Alien: Uh? This is an outdoor activity?
You: So you haven’t planned any other activities. Thanks for this information. Unfortunately, as you know, I am not able to walk “far” or jump from cliffs, and as you know, Husband needs to be able to sit down or use a wheelchair after long periods. What will you be doing about that?
Alien: Oh, come on, it’s not that bad, you guys can WALK.
You: Information received is: walk for unspecified distance, run down cliff. We can offer: walks for short distances. How will you make this work?
This might force the issue where the Aliens go “Oh, fine then, DON’T COME if you hate your family.” But then you (and your husband) will have had the benefit of knowing that all you did was ask where the bathroom would be.
If they have a family culture of being conflict-avoidant, this might make them so frazzled that they pick simpler activities to make you stop asking questions.
It could be that your husband goes “God, it just feels like they don’t care about us at all, doesn’t it? It’s just not worth it.”
Drill-down scripts might wake them up to the fact that they’re being extremely obtuse about activity-planning. It’s vaguely possible that they’re actually that useless and unreliable. After all, we all have That Friend. The one who says “come over, I’ll cook dinner” and you say “Ok, but remember that X has a nut allergy” and they’re like “yeah, yeah” and then when they serve the dinner they go “Oh, wait… are almonds nuts?”
And you’re like:
Hey, maybe that’s a happy ending for your household, Excluded. I’d like you to have a happy ending at Winterval.
I’m truly sorry about these aliens. I hope that as your household develops, you’ll be able to rely on other sources of Family Togetherness.
Awkwardeers, any suggestions for more scripts for Excluded?
Happy Holidays, Awkward Army. I wish you every flavor of joyful houseroom.
162 thoughts on “#649 and #650: Making Room for the Ones You Love (Is How They Know You Love Them)”
Wonderful advice as always. My partner has Young Onset Parkinson’s. He is 33 and often appears to be young, strong, and able-bodied, but he is NOT.
He came up with the concerpt of a “fun hangover.”
“Wanna go to the amusement park?”
“Yeah, that will be fun! Hmm…that will probably have a three day ‘fun hangover’ where I will be in pain and stiff and fatigued. Amusement park, three day fun hangover, yeah. Yes, that one is worth it, let’s go! And remember I will be pretty out of commission for three days, so don’t expect me to help much with house/kids/life. It will take all my reserves to get to work.”
If it is something like “let’s go to the all-day wedding of these people you don’t know in a really busy place and try to deal with our kids the whole time,” that one is NOT worth the fun hangover it would cause. Er. We learned that one the hard way. We try to do a lot of cost-benefit analysis with his limited energy/physical resources.
And I try to remember that while he usually LOOKS fine, I am not inhabiting his body and I don’t truly understand how he feels. I have to assume he is always trying his best and that he, too, wishes he felt better. No one wants to feel like crap. No one wants to be in pain. No one wants to feel like a “burden.”
I have learned so much about ableism since he has been diagnosed! As an intersectionalist feminist, I thought I got it before. I didn’t. I am starting to, though. 🙂
And I try to remember that while he usually LOOKS fine, I am not inhabiting his body and I don’t truly understand how he feels. I have to assume he is always trying his best and that he, too, wishes he felt better. No one wants to feel like crap. No one wants to be in pain. No one wants to feel like a “burden.”
Yes, this. Sometimes I have to remind myself that my partners really do believe this, that they are comfortable working with the Vicki we have, and don’t think I am slacking off. This phrasing may help me, so thank you.
I agree with everything Elodie says to LW1 about access. There are other alternatives and LW1 bought a house that is unmanageable for someone with MS. If the houseguesting is going to continue, accessibility arrangements gotta be made.
BUT. I really don’t think that’s LW1’s problem. All I’m hearing from their letter is “I don’t want my dad to visit because it feels intrusive in my own time off but he’s a widower and all I have left so I have guilt.” There are some major undercurrents on LW1 and LW’s dad’s part. It sounds like LW’s dad feels like he should be part of LW’s immediate family (sounds like LW is an only child? His wife LW’s mother died) and as far as LW is concerned, dad is a yearly houseguest but not in the Inner Circle. Not the kind of person you’d go out and buy an ergonomic mattress for.
This is part of being adult, part of being married/partnered long-term. At some point, your parents stop being your go-to family and it becomes your spouse. At some point, your parents become guests, not family (even for people who have smooth relations with parents). And parents can have a hard time adjusting. ESPECIALLY in your circumstances, where you dad is somewhat-freshly alone at the time that you’re starting to pull away (and would have been pulling away had your mom been alive, this is just part of life).
My advice is talk to your dad. I think the pain is a red-herring. Were there not other, deeper issues here, you’d figure out a way to make the visit better for him. If you were really excited about seeing your dad, you would work out a solution. But I think the two of you need to have a discussion about what you think about and want from your relationship. Your dad doesn’t get to use widowerhood as a cudgel against you, no more than you should be using “Well, you’re disabled so…” against him.
It sounds like your dad is unable to function in your house AND annoyed/hurt/shocked that he no longer rates high enough in your world to justify accommodation. Maybe the accommodations he’s looking for weren’t feasible at all and there was no way you could have found a one-story house or an elevator (depending on where you live, those might be impossible!) But working out “Hey, our house isn’t actually very accessible at all, let’s get you a hotel room” or “Hey, let’s just visit you, you don’t want to travel that whole way anyway, would you prefer us to get a hotel or stay with you?” isn’t gonna happen unless you both can address the change in status.
And maybe you *don’t* want even a yearly visit relationship with him. He could be hard to manage even MS notwithstanding, you could be very much a homeperson relishing your 2 weeks of vacation as a way to recharge and focus on yourself. That’s okay.
Yes, the theme here is making room for your loved ones – I tried to come down exactly half and half, but I suspect this dad isn’t actually that much of a loved one.
Which is really tough. Our family friends (the moms went to med school together, kids grew up together) are going through something similar. Their parents had a big age gap and their mom, the younger of the parents, died suddenly a few years ago. And now their dad is suffering from standard old age things and he’d never expected she would die first and basically everything feels topsy-turvy for them. I sometimes wonder if younger-daughter isn’t stay around home town solely so she can be there for dad. They have a very good relationship, so it’s not begrudging, but it’s still a bit of a burden. But, it’s a burden she’s choosing to take on out of love for her dad, which is a very different thing than obligation.
This letter has a strong ring of ‘everything feels topsy-turvy’ to me. It’s hard enough to cope with your parents aging, but if LW imagined that dad’s health issues meant he would probably die first and expected apparently healthier mum to be around much longer, there might be an added sense of ‘this wasn’t how it was going to be’ which is all tangled up with the grief over mum’s death.
Yes, I’m seeing that too. LW though doesn’t say when the MS diagnosis came. But either way, things were supposed to be one way and now they’re the opposite and what do we do.
People who love each other very much can still lash out when they’re confused and hurting. That’s why I think talking to Dad is step one here. (but maybe step zero is processing some of LW’s feelings first?)
I don’t think that’s necessarily true.
I’m in somewhat similar circumstances – my mother passed away a bit over a year ago, and my father is pushing 80, has limited mobility, and now lives alone in an area that is extremely remote and hard for me to get to (and even harder for him to get to me, so it’s more about how and when I visit him than how to accommodate him at my house). And these are just very difficult waters to navigate. Figuring out “How can I support my father, and see him when possible, and find ways to be there and provide the help he needs, while still protecting myself in this still very new, very emotionally fraught, very logistically challenging, and very frustrating circumstance, that is also laden with tons of guilt and sorrow?” is definitely not about my father not being a loved one. It is simply that these things are complicated and difficult.
LW: while I think Elodie’s comments about ableism are very, very important to keep in mind regarding your father’s reactions to and comfort in your home, it is also okay that this situation with him wanting to visit and you wanting time to yourself is difficult and overwhelming. Have you seen/are you able to see a therapist about this? I have found it very, very, very helpful for untangling a lot of my guilt and fear around seeing my father. In an ideal world, I would always be excited to go visit, because I love him; the reality is that it’s more complicated and there’s some dread involved, too, even when I genuinely want to visit. Working on how to handle that, and be able to do the best I can for him and for me, is rough, but getting better with help and time.
Jedi hugs to you, I hope you are able to figure something out to protect yourself as well as accommodate and welcome your father. ❤
A sense I get from LW1, too, is that the writer is maybe feeling that it ought to be Dad’s job to be the assertive adult?
Like, if I were the guest, and I were going to stay with someone, and their home was in some way unhospitable to me, I would say, “Hey, you know what, recommend me a hotel that’s not too far away. That way we can both be comfortable.”
But if I were the host, I would expect the guest to make that call for herself. “I can accommodate you, sort of. You know what my house is like.” “Yes, and I think I’d be more comfortable in a hotel — can you recommend something?”
But the dad, instead of proposing a setup that works for him, is accepting what’s offered and then complaining.
It’s tough the first time the offspring have to step up and play the adult role for their parents, but this may be that time.
That’s a really good point.
Some families have a lot of baggage around where you stay when you visit. To some, staying in a hotel rather than their home is fine, and in other families even suggesting it is a horrible sign of how much you don’t love your family anymore. There’s nothing explicit in the letter that says which way this family leans, but, sleeping on a lumpy couch and getting carried up stairs(!) imply that this may be the sort of family where if you REALLY LOVE US we stay in the family house.
That’s what bothered me about Elodie’s response. It’s not the LW job to manage her father’s illness for him. He’s an adult and if things aren’t working for him he needs to say so, and then they need to find something works. Whether that’s a hotel, or a plane ticket. The LW shouldn’t be expected to read his mind and be expected to act like his secretary, and his nurse, and his travel agent as well.The LW isn’t some abelist jerk because she didn’t spend money she doesn’t have, on a house she doesn’t want for the sake of a relative that visits twice a year.
Yeah, that bothered me about Eloide’s response too. The dude’s an adult, he doesn’t get to say he’s okay with something and then complain about it and blame it on other people and expect them to fix it.
Seconded, this is exactly how I interpreted the letter. Basically, my sometimes-friend is upset I’m not reorganizing my life around them. E.g. you might select a wedding date based on your best man but not your second cousin Lucille, or look for a house that accommodates the people you want to see often but not your dad you see annually mostly out of obligation.
Agreed. Sure, he’s not being disabled at her, but she also didn’t buy a house with stairs at him. There are lots of considerations that go into picking somewhere to live, and it’s understandable if the needs of someone who visits once a year are not high on the list. The dad would be within his rights to say “Can you come out and visit me this year instead?” or “How about I stay at a hotel this year and not at your house?”, but “Why don’t you have an elevator?” seems (considering the lack of elevators in most single-family houses) to be expecting a level of organization of her living space around his needs that doesn’t actually match the level of their presence in each other’s lives.
Very wise. May the internet bless you with all the upvotes.
I’m imagining myself in this situation and I totally agree with you. I love my family, but all the love in the world is not going to buy me an apartment with a reliable elevator in my area, a spare room for guests, and a sufficiently comfortable mattress. I’ve been on the receiving end of some grousing from my partner’s father about this, and I told him flat out that if he wants these things in my house, he’s going to have to be the one to pay for them because we just can’t afford it. He stays in hotels or crashes with other local friends when he visits, and that’s just the way it has to be until we can afford everything he requires.
A lot of now-elderly parents grew up in a time when housing prices were very different, and it’s hard for them to understand that their kids maybe can’t afford a house in perfect repair with room to spare for guests.
If somebody who needs accommodation in some way comes to my house, I will do my best to make it work. However, sometimes it’s impossible.
For example, my wife’s grandmother can’t do stairs. She can do a set of steps (as long as there are fewer than three), and she can walk short distances if she has a walker. This means she can never be at our house for longer than about an hour because there is no downstairs bathroom. Now, we could have chosen a house that would allow for her to stay longer, but we didn’t. Even though my wife loves her nana, the possibility of having a longer visit with her was just not a factor we considered when choosing our home, especially as we see her other places which can accommodate her.
Likewise, LW1 may feel that a once-yearly visit by her dad is not an important factor when choosing her home. (Although I would personally at least make sure we had a bed for him on the ground floor, if at all humanly possible. Even a decent sofa bed is pretty comfy.)
I have to think that at least some of LW1’s dad’s problems are on him. I can understand him being caught off guard one time, but once he knew what the situation was, it was on him to use his words and say “your stairs are too much for me and your sofa leaves me in agony”. There’s something that strikes me as passive aggressive about coming to the same place multiple times, knowing that you are going to (however legitimately) complain about the accommodation.
Ultimately, I agree with Celette. It sounds like this isn’t really a disability issue, it’s an “I don’t want to use my break time to host my dad issue”. If LW1 was really enthusiastic about hosting her dad, she’d find a way to make it work. That’s why my mother in law installed handrails in her downstairs loo, so that nana could visit comfortably and safely. We haven’t gone to similar lengths, because we aren’t as close. That’s how families work. The part that sucks is when somebody wants a level of closeness and support that somebody else doesn’t want to offer. That sucks big time, and I wish I knew the solution to that one.
Yeah, this rings so true. I’m part of a group that also includes a guy in a wheelchair. He’ll remind us each time we’re planning an event at someone’s house that he can’t go to someone’s house because the odds are he can’t use their restroom. So we make sure that we also meet at coffee shops or libraries or other places we can hang out where he can come too. I barely know the guy, but I like him enough that it feels natural to go “oh wait, does that place have a ramp, let’s go to the place next door instead” when planning outings I know he’d want to come to.
It’s the same way with my physically fit in-laws: I live in a small apartment, so when I invited them to come visit for Thanksgiving, a hotel was part of the discussion, because there wasn’t room. I don’t like Black Friday, but my father-in-law does, so we compromised and went out toward the end of the day when it’d be less crazy. We adapt because we want to spend time together. It doesn’t sound like LW1 and her father want to spend time together enough to adapt; it sounds like (and maybe I’m projecting) the father wants to complain more than he wants to suggest alternatives and the LW wants to complain more than she wants to suggest alternatives.
Our house also lacks a downstairs toilet, and this is certainly a thing I dislike about the house. But acquiring a better house (one with, say, a downstairs toilet; or no stairs at all) would require truly enormous sums of money, money which we simply do not have. Installing a downstairs toilet might be possible, but would require large sums of money (that we might have) and serious thinking about where to put it (the layout doesn’t have anywhere obvious). LW #1 says their house is a “fixer-upper” – presumably they got the best they could afford and are working on it to make it better; making houses accessible is a serious money sink and I don’t think people can be expected to do it all at once.
I do have friends and family who can’t do stairs, and sadly that means I can’t host big get-togethers, or have certain people over for dinner. And that is sad. I wouldn’t invite them to come and then moan about them complaining about the stairs though – that would be super rubbish.
Long walks and weddings in castles and paintballing all sound like super fun things to me (and not “alien”, which frankly I find insulting); but again, I wouldn’t go around asking people who *can’t do those things* to do them and I wouldn’t make them essential parts of Big Family Ritual Things (like Christmas, or my Wedding) because I want that sort of thing to be accessible to all the people I’d like to come. I think there has to be a balance between “things everyone can do” and “something to make everyone happy”. I will likely go out for a run on Christmas morning, but I’m not expecting anyone else to come with me – that’s my happy thing, and when I’ll get back I’ll be all the better at engaging in polite conversation with obnoxious relatives for having had it, and then we can all eat way too much Turkey and argue about the rules to Trivial Pursuit (everyone in my family likes doing this, your family may vary etc)
Yeah, I found the “alien” thing a bit insulting too. I love long walks on the beach, and getting married in a castle sounds AWESOME. It’s shitty that the LW’s husband’s family refuses to make accommodations for people who can’t do those things, and won’t offer any alternative family plans that don’t involve physical exertion or travel, but that doesn’t mean that the activities themselves are inherently bad.
Cough – friends, your friend who lives on a boat has not said that “outdoors activities are only enjoyed by aliens.” She has said that LW #2’s in-laws are aliens because they act as such. If you identify as such as well, then you are welcome to challenge me to pistols at dawn… but please do let me choose the venue…!
While I agree that these people are oblivious douchenozzles, and deserve all the blank incredulous stares they can get, I also read this:
“BECAUSE LITERALLY NOTHING ABOUT THEIR ALIEN ACTIVITIES SOUNDS FUN”
as a condemnation of the activities rather than the attitude. But then I have witnessed the cheese rolling and found it to be tremendous fun, admittedly from the safety of a pub beer garden 😉
It’s coming across not just as criticism of the actual bad behavior, though, but as criticism of the choice of activities itself. It’s not weird, alien, or mean to enjoy hiking and paintball; it is weird and mean to only ever plan hikes when you’re inviting people who can’t walk long distances (or, for that matter, just dislike hiking), especially if you then throw a fit about how they never come to your events. So I don’t dispute that LW’s partner’s family are being weird mean jerks! They totally are! But the reply as written does suggest that a fondness for hiking is itself weird and alien and terrible (“LITERALLY NOTHING ABOUT THEIR ALIEN ACTIVITIES SOUNDS FUN,” “these events sound AWFUL”), and I do dispute that.
@Elsajeni – I am pretty sure they, both the people and the activities are being described as “alien” because they are *alienating* the LW & husband.
Personally I read that as not a judgement of the activities themselves but of having those activities at every major family event with no other options presented. It is silly to have a funeral where the only event is a long walk and there is no service or other gathering before or after. Not everyone will be able to do the walk, so it’s important to have some other reception or visitation so that others who cared about the deceased can participate. This isn’t just for those who can’t walk but also elderly ppl, children, sick or tired people who may not be up to walking so far that day.
Same goes for paintball. There should be some other event like a dinner or something as part of that bachelor party so that those who dont want to or can’t paintball can sit that out and participate in another part of the event.
I think that your ” wouldn’t go around asking people who *can’t do those things* to do them” is part of the problem with some people. I have a friend with Lupus and her parents are totally unsupportive of her. They believe that she *can* do those things and chooses not to … out of spite maybe? I’ve never really gotten a good understanding of their reasoning, but I think that part of it may just be that children are supposed to be healthier than parents, and her father is a fit policeman, so why is his daughter overweight and constantly taking pain pills? And what do you mean you can’t feel your feet? and… argh…
So ya, I think that alien-ness comes at least in part from people who are unwilling to grok “can’t” and choose to interpret it as “won’t” and then act accordingly.
It’s hard to express the crazymaking crappiness that is being disabled and totally at someone else’s mercy. Even just being unable to get around the house under your own power makes for this specific brand of resentful batshit as you wonder things like, It’s 3am and I have to go to the bathroom, do I call for help getting down the stairs? Is that being too needy?
And that only gets worse if most of the time, you’ve been able to choose what your environment is like so you can drag yourself across the floor to the ensuite at 3am, but now you’ve given up those surroundings and put yourself into someone else’s hands for a short while, ostensibly for that person’s benefit (?) so it’s unfamiliar, you don’t have a routine worked out, and there’s this chronic niggling thought: It doesn’t have to be like this. It would have been possible to make this less crappy.
So LW1, no blinking wonder your father is complaining! Making him dependent on you for basic mobility and control of his pain is guaranteed to make him his whiniest, most insecure, least grateful self. It’s a recipe for bad interpersonal mojo. If you want dealing with him to not be irritating as hell, finding accommodations that work is in your own best interest as well as his.
I think this is really wise! and I wonder if the LW might find it easier to sort out what she’s feeling and/or how she wants to interact with her father if they could meet on more even ground, where the LW’s father has more agency. Presuming that’s a possibility, that would certainly be my advice. My family has a much more straightforward relationship with the family members who use accommodations now that we’ve rearranged some holiday traditions to include those accommodations. (“Straightforward” doesn’t necessarily mean “better,” of course; but it’s easier to know how much of the relationship’s strain is emotional difficulty versus logistic or physical difficulty.)
A few years ago I broke my leg for the first time ever. It was also the first time since I was a kid that I was really dependent on someone else to do chores and errands and things. It was horrible, and I learned something about myself.
When I am dependent and someone else is doing something for me, I feel like I have to be grateful. This isn’t much, when the people are doing things the way I want them done, and listening to me. However, I discovered that feeling like I had to feel grateful when the person was not listening to me, not doing things as asked, deciding what was best for me either without my input or disregarding my opinions was horrible. I’d try to act grateful, and then past a certain point the things that I disliked about everything would make me ANGRY. So. Angry. Being angry when I felt that I should be grateful was a horrible grating dissonance.
I’m not used to being angry! It was …unsettling.
So, I had to explain that I needed the person helping me to take my wishes into account, and listen, and not just do it his way, or, I was going to get up and do it myself.
Really it was easier to do it myself. I am really not looking forward to being dependent again.
This is right on. It is amazing how little help feels like a kindness when it is not given according to the helpee’s expressed wants and needs.
No real input, I just want to marry this phrase: “It takes at least two surfaces to make Friction.”
Argh! I wrote a long, thought out comment, and then it got eaten.
However, my basic points are this:
1) LW1 absolutely should improve her accommodation for her father, at least to the point of providing a decently comfy sofa bed, on the ground floor/same floor as a bathroom.
2) These accommodations may not be possible, due to the layout of the house, or other reasons.
3) I have to say, dad needs to use his words more. There’s something passive aggressive about repeatedly going somewhere where you know you won’t be adequately accommodated, and then complaining. If a lumpy sofa leaves him in agony, and stairs aren’t doable (both reasonable issues), then he should move future visits to his own home, or work out some other solution in partnership with LW1. This “you fix it or I guess I’ll just SUFFER” attitude doesn’t sit well with me.
4) If I want to host someone, I will move heaven and earth to make sure that they’ll be comfortable. If I don’t feel so enthusiastic, then arrangements suffer accordingly. I get the feeling that LW1 really just doesn’t WANT to host her dad all that much. That’s OK, but own that feeling. The real issue is how to communicate that as sensitively as possible to her dad. I have nothing useful to say about that, sorry.
My partner and I live in a house that we rent (and could not ever afford to buy) and we have no better guest accommodation than a single couch. If there was a visitor we really wanted to come that couldn’t hang with the couch, we would offer to get their hotel, if they were someone we were enthusiastically consenting to host. If it’s someone bearing down on us or someone we’re not close to, we give them hotel information and have them for dinner. If, god forbid, an ailing AND beloved parent (we both have un-beloved parents) had to come live with us, well, we would make more drastic changes to accommodate, but right now, we love our awkward home for two. Hosting doesn’t have to be under the same roof to be gracious.
Agree that LW1 sounds like a lot of unspoken baggage with dad, and that the other family would be considered aliens not for their choice of activity so much as their “but this is what Humans do for Celebratory Purposes” obtuseness about why LW2 is unable to attend. They are alien in their defensive, nearly hostile cluelessness, not their choice of funtimes.
Oh, and now both comments are here! Sorry for the double (triple?) post!
It looks like the first comment was your first time commenting on Captain Awkward (with that email address/username.) In that case, an author or moderator has to approve your first comment. Welcome to the community.
Ah! I thought it might be something like that, unfortunately I thought it after I’d posted the second one. D’oh!
I have to say, I was really shocked that LW1 puts her dad on a lumpy couch when he comes to stay, MS or no. When my mother comes to visit me in my little studio apartment, she gets my bed, I take the fold-out floor mattress. My mother is in her late fifties and has nothing more than standard older person aches and pains, but she’s always been a bad sleeper and I know having a proper bed makes a huge difference to her. Giving up my bed for a few nights is quite literally the least I can do in exchange for the pleasure of her company.
Elodie hit the nail on the head. When you love someone and are genuinely excited about spending time with them, you make room for them. Not only do you make room for them, making room for them doesn’t feel like an imposition or a sacrifice. It feels natural and obvious. LW1, the fact that making basic accommodations for your father and his disability does not feel natural or obvious to you suggests that there are major problems in your relationship that are nothing to do with his disability. Those problems may not be your fault, but it’s worth untangling them from the host of practical considerations created by his MS and ask what’s really stopping you from making your home a welcoming space for him. Is your father worth a one-time investment in a good-quality futon for the ground floor of your house? If not, why not? That’s the question you need to be asking yourself.
Yeah, I was shocked by that too. I’m assuming that the LW put her dad on the couch because it was on the ground floor and the bed is upstairs. But even if that’s the case, it’s pretty still shocking that she thought this was ok, and didn’t at least try to come up with a more comfortable sleeping arrangement for the next visit–and then has the nerve to be upset that he complained about it (!).
It’s also very passive-aggressive on his part, as someone mentioned upthread, that he was aware of the lack of accommodations, but chose to keep visiting her and complaining rather than either asking for better accommodations, inviting her to his place, or just deciding not to visit. There’s definitely some…weird dynamics going on in this relationship. I think you are spot-on about the need for the LW to untangle her feelings about spending time with her dad from the practical issues related to his disability.
I think this is being a little hard on people who love their families, but don’t love having houseguests. I know that if I could afford to put my parents up in a hotel when they visit (they can’t really afford to foot the bill for one themselves, so I don’t ask them to), I’d do it in a heartbeat. I love them, and love seeing them, but myself, my partner, and my easily-overstimulated special needs kid all enjoy our time with guests more when those guests go away at the end of the day and come back in the morning. And I think it’s okay not to feel enthusiastic about people (who you genuinely love and want to see!) sleeping in your house.
But I agree that “don’t even try to accommodate Dad” isn’t an okay answer. I just think that “Dad stays in a hotel when he visits and they spend time together during the day, some of it in places that are better laid out for Dad than LW1’s house” isn’t inherently a worse solution than “LW1 acquires a comfortable bed for Dad on the ground floor.”
Sure, I think that’s fair enough! I’ve been the family member staying in a B&B down the road at Christmas when visiting relatives who literally did not have the space for me and it was honestly a more comfortable experience for everyone involved! If financially realistic, I think that’s a perfectly viable solution. Kids also change the dynamic completely.
I wasn’t really trying to start a discussion about where specifically LW’s dad should sleep, so sorry if it came across that way. Like you, I think whatever the solution to this situation is, “continue to have Dad over but make no accommodations for his health whatsoever” is not it.
Is her dad supposed to sleep in her bed with her husband?
Well, if it was my dad and he was in chronic pain, I would probably do me on the couch and partner on an air mattress. Or just get a double air mattress for the floor. But that’s just me.
Yup yup yup. When my parents came to visit me in my little studio apartment, I slept on a terribly uncomfortable folding bed and they got my bed. They’re in good shape for being in their 70s, but I want to make them very comfortable when they come to visit. I love it when they visit, and I want them to feel 100% totally welcome.
I think that what happened here is that LW1 maybe never had that close of a relationship with her parents to begin with, even before her mother’s death. But while her mother was alive, LW1 could just let her parents do their own thing and not get too involved with them. Now that her mother is gone, LW1’s father is leaning a bit harder on LW1 because she’s the only family he’s got – or at least, the closest family he’s got – and he is ill and lonely. And this feels different and uncomfortable and like a sacrifice, because it in fact does involve sacrifice.
One of the things that LW1 needs to think about is her relationship with her dad and how she’d like to deal with his declining years. MS is a progressive illness. What will happen when he’s older and needs more assistance? If even a short visit at Christmas is too much of an imposition and getting a more comfy couch is too much, is he basically on his own for nursing care? Mind you, some parents deserve that – not every parent deserves the love and care of their child – but does LW1’s dad?
Thanks so much for this response, Elodie!
I know that those people who can’t/ won’t accommodate me don’t necessarily dislike me, or not care about me, but I know they have priorities far above my inclusion. And that’s sometimes painful, but it’s everyone’s right.
Very often, as in, with everyone in my life who does this, people are in denial and that denial is a problem. They do want me to be there, they just don’t want me with the body, brain and various limitations I happen have (“I want you to be my bridesmaid, but I don’t want your powerchair coming up the aisle behind me – it whirs.”). So I turn down a lot of invitations and when the invitations stop coming, it’s because “You wouldn’t have wanted to come.” And that’s a huge problem that hurts far far worse than “We can’t fit you in.”
However, it took me a while to figure out how this was – a few friends always fall by the wayside when disaster strikes, but it can be hard to come to terms when close family don’t want or need you as an important part of their lives. So while the Dad isn’t necessarily handling things all that well, I can understand the “I warned him but he said it was fine…” He hoped it would be fine anyway and when he realised it wasn’t, he perhaps assumed the LW didn’t realise how very unfine it was.
I have so many feelings about both of these. For the first one, my mom can’t do stairs. My sister moved from a house with a bathroom on the first floor to one that doesn’t, but my mom was willing to use a stair elevator. If you want your dad to visit (and it’s up to you if you do), is that something you can find in your budget? Would your dad go half-ways with you on it? But I totally understand on the cost. My mom has also stayed at nearby hotels that have accessible bathrooms or with neighbors who have a first floor bathroom. Are either of those options? Ask your dad, also, what solutions he might have (other than “get a new house”).
For the second letter OH MY GOD. I have chronic pain and I’m lucky enough that it’s only a couple of relatives who Don’t Get It, not all of them. One of my sisters just did not get it for a long time, but then I called her once when I was so out of spoons from things I did the night before that I could not move, and talked to her about the spoons theory, and she started getting it after that (“oh my god, you mean you overexerted yourself last night knowing you wouldn’t be able to move for hours today, and did it anyway because you had to? That’s a calculation you have to make?”). But my brother and one of my aunts are just terrible about it. You have all of my sympathies. I wish I could find a way to explain it to them to get them to just stop. 😦
I think that Goldfish has it spot on when they mention “priorities above (their) inclusion”. It’s just one of the many things that are sucky and unfair about disability. For example, if my sister needed me to get married at an accessible venue, then there’s no doubt that I would. Don’t even have to think for a second.
If my cousin needed the same accommodation (and I’m talking about the cousin I think is a bit of a twit), then sorry, it looks like they can’t come unless the venue I like also happened to be accessible. Even though the same annoying cousin would be able to come if they were able bodied, because I like them fine, just not enough to make them a factor in choosing my wedding venue.
That’s sucky and unfair of me. Man, I need to do some thinking.
I don’t think that’s sucky and unfair of you at all, actually. Some people are worth making room for and some are not, not because they are bad people or you are a bad person, but because your relationship with them isn’t one that involves that. In your example, your sister is worth taking into consideration and your cousin is not. Your sister is in the circle and your cousin isn’t, and you get to decide who’s in and who’s not. The key thing is to make sure that you do make every effort to accommodate everyone in your circle, not that you include everyone in the circle.
On the other hand, thinking about inclusion often benefits more than the one person being thought of. There are sometimes other people on the guest list who are perhaps having trouble with stairs now, but, really don’t want to admit it. People with small kids often find that ramps and accommodations are useful for them as well. Having been sick and having trouble with stairs, I just look at buildings, sidewalks, parking lots, parks, and intersections very differently now.
This is an interesting line: “It looks like people deciding to give up on you FOR THEIR OWN HEALTH.”
Isn’t that what you constantly recommend people do? Someone’s having a hard time and leaning on you a lot and you’re getting weary, African Violet them before they drain all your energy despite the fact that right now they might not be able to live without their entire Team Me, etc etc? You have given lots of advice on how to deal with people getting tired about issues, which usually results in you saying the people need to stop helping so much (or at all) for their own health. Now you turn around and say it’s people’s obligation to support people they care about regardless of their weariness (LW 1 here). Pick one; you seem hypocritical right now.
As a chronically depressed person, I’m so glad to see an article here about accommodating people who have a naturally harder time at doing “normal” life things than many people. But your view of folks with Issues and how others should be drawing boundaries and stepping waaaay back instead of being supportive, has bothered me for a while. Sometimes people can’t live alone, and people withdrawing at the worst times just feeds the despair beast. I agree with your conclusion to LW1: if you care, suck it up and help. It’s not all about you.
Psst, Aurora? Do you realize that Guest Blogger Elodie Under Glass (me) wrote this post, not Blog Owner Captain Awkward? We are two different ladies and neither are a monolith, so do make sure you aim before you fire.
If you’re aiming for me, I am quite happy to discuss your feelings with you, but I think the forums would be more appropriate – part of being a good guest is not muddying our host’s floor.
Wow, that was a phenomenal slip on my part. Yeah, I was definitely aiming at Captain Awkward. I approve of your advice way, way more.
Also, lots of discussions go on in the comments, not all of which are fluffy-happy-bunnies.
I’ve tried to answer you above as honestly as I can.
We say “you can pull back on the work you do in relationships if your own health/safety/well-being is getting compromised.” Figure out what you can do wholeheartedly, and then do that thing.
To address your larger point, we get a lot of mail from: 1) people who are the SOLE support system for friends who are struggling, which is often unbalanced and unhealthy 2) people who have reached their breaking/drowning point 3) people who are actively trying to stay engaged/supportive/helpful but are having trouble setting self-protective limits on what they can do. They want to be there for their friends, but they are reaching their last reserves.
For example, recently a college student wrote me to say “my friend from back home is going through a lot of stuff right now and she wants me to be on Skype with her all the time late every night, but I have to study and I’m losing sleep and on the verge of failing my classes because it’s all too much. I’ve tried telling her that I need to talk for only an hour each night, I can’t text back right away, etc., but if I try to set a reasonable boundary she talks about harming herself or talks about how I secretly must hate her, so I spend another 3 hours reassuring her.”
That student needs to direct that friend to other resources, and needs to take care of themselves, and find a regular schedule to Skype that works for them (and sign off when the end time is reached) even if it doesn’t feel great for sad friend. Or it will get to African Violet levels, because it’s unsustainable. When you are Sad Friend, that SUCKS. It sucks to hear, it sucks to read. But it’s not untrue, and ton of “sucking it up and helping” (in your words) is already going on in these situations. We’re often answering letters from people who tried “sucking it up and helping” for a long, long time, and things aren’t getting better for their friend and are deteriorating for themselves. Nobody is using the African Violet or even the “Pull back a little if you need” as a recommendation of first resort.
We also get letters from people who got put in the helper role for someone they don’t actually want to be around at all (see: exes, manipulative exes, abusive exes looking for a way in, toxic and mean people who are also sad), and they feel guilty because they don’t want to abandon the person to the despair beast, but they don’t actually like the person. The answer can’t be “stay involved indefinitely with someone you don’t love or like, because they need you!” When you break up, you stop being the person’s support system.
We don’t say “abandon ship, everyone!” We do say “you maybe can’t be a substitute for someone’s mental health care all on your own.” If it’s someone you like, see them when you can and take breaks when you need to. Set a regular schedule for contact and keep to it so that there is structure. It may not be enough, but if you do what you can do wholeheartedly, then the people in your life can count on it to be real.
Elodie (who wrote the response above, not me) said the LW can decide NOT to have their dad round for Christmas if that’s what they really need to do right now. But if they do invite him, don’t leave him in pain on a lumpy bed in an inaccessible house and then blame him for not liking it. Decide what you can and want to do, and do it wholeheartedly.
If reading the blog makes you sad, for your own self-care, by all means, PULL BACK. Take it to the forums, take it to your own space. I do not want to make anything worse for you.
Please direct future comments on this post to the Letter Writers or to Elodie (as in, make suggestions that might help them). I don’t want this thread to become about me/blog administration, etc.
Ugh, I have lots of Feelings about this. I have depression… but my ex-boyfriend has severe depression/suicidal thoughts, anxiety, and problems handling social situations. Being his only social outlet is stressful and time-consuming and exhausting and sometimes seriously crazy-making, but I can’t African-violet him, because that will, as you put it so well, “feed the despair beast.” I’ve been trying to suck it up and help, because I can handle the hit to my mental health, and I know that he couldn’t.
EX-boyfriend. EX. As the Good Captain says, “when you break up, you stop being the person’s support system.” And frankly, even if you hadn’t broken up, it’s not fair to you to be his only social outlet. *He* is responsible for his mental health. Not you. African violet away, or at least set some boundaries.
That’s really rough–I’m sorry. I understand how his situation could make you feel really guilty about wanting to step back.
But you can’t be responsible for his mental health. I don’t just mean you shouldn’t or shouldn’t have to; you literally cannot. Even if you’re an extremely skilled mental health professional, you cannot–because he is your ex, not your patient. It is highly unlikely that you can manage his mental health effectively.
(And even if you could it still wouldn’t be your job).
Also, without knowing your gender, I’m going to point out that there is often a gendered dynamic in these situations. Women are pressured and expected to take on other people’s emotional labor. Making room for people we want in our space is important, but look at any mixed-gendered group and chances are you’ll see that women are the ones making most or all of the room. That’s not to say that men never have to deal with clingy exes or that men are never pressured to take on other people’s emotional labor. But there is an entitlement behind the concept that it’s okay to treat another human being as an emotional prosthetic, and that entitlement is tied in with all the power dynamics that make up the kyriarchy. You are entirely within your rights to refuse to be objectified in that way.
Not even a skilled mental health professional would be someone’s sole support. Even they have to sleep sometimes; even they have to say, “I’m not available right now, call a crisis line if you’re in trouble.”
I feel like there are so many feelings packed into the first letter, only some of which are directly connected to having dad to stay. I don’t want to speculate too much about the backstory but wonder whether mum’s death was unexpected and part of this is about grief and the sense that ‘it was never supposed to play out like this’. So maybe LW needs to unpack some of the more complicated feelings (maybe with a therapist? Or maybe just in her own head) in order to figure out where she really stands with dad.
Regardless – LW, it’s not selfish to feel like you’d like to spend the holiday period with just you and your spouse. And it’s not weird for that to conflict with your sense that your dad needs you. It’s also entirely possible that your dad also has mixed feelings about spending the holidays with you – I used to feel enormous guilt over my dad spending Christmas alone (I spend it with my mum since my parents split) until I realised he truly enjoys a solo Christmas. Maybe you can work out a compromise? A script along these lines could work:
‘Dad, it means a lot to me to spend time with you in the holidays, but I realise your health means that our house is not an ideal space for you. Because I don’t get much time off the rest of the year, it’s also really important to me to have some downtime over the holidays and to spend some one-to-one time with husband. I’d really like it if you could come for a shorter visit / at a different time / stay in a hotel / some combination of the above so you can feel comfortable and I can have the time and energy to really host you.’
Obviously this won’t solve everything. But I think the combination of issues here means everyone has something to gain from this conversation, even though it might be difficult.
I feel like 2/3s of non-abusive relationship problems could be solved with everyone putting forward into words what they are assuming goes without saying.
That’s how we discovered Steaksgiving (we all talked and realized that none of us were actually all that big on turkey and it is such a hassle, so let’s have a steak dinner instead!) and lo, it was glorious.
Holidays are soooo fraught, especially holidays where things are *different*- this is our first Christmas after my grandmother died and she’s always been the center of Christmas for not only our immediate family, but also all her siblings and their children and grandchildren. It makes you reevaluate what you’ve always assumed you’ll do. And sometimes it turns out that traditions need to be changed (or GET to be changed).
Thirded! I totally agree with all of Elodie’s answer, and I wanted to signal-boost something: I wonder if part of what is going on with LW #1 is negotiating between ‘how we have always done things’ and ‘how we will do things in the future’. If the LW has always spent all of their two-week holiday back with her parents over the winter holidays, the dad might also be assuming that that is just the way it will always go. If there’s limited finances or you always stayed in the same house, your dad might just be assuming he stays with you because family! stays! together! But it is good to remember that things that worked in the past may no longer be working now– for any of you, it sounds like– and that does not automatically mean that any of you are failing at being family or loving each other.
I very much like Zooey’s script above as a way of broaching that conversation. I have had to have a similar conversation with my parents (who also were dealing with their own cocktail of physical/mental health challenges and in addition had…some difficult character traits, and assumed that I would be staying with one of them for two weeks over Christmas, forever) and it was really, really uncomfortable to have to tell them that there were other ways I wanted to spend that time. I won’t say either of them liked that conversation or were happy that I was no longer making spending time with them my number one priority all the time. But my dad ultimately adjusted and worked with me to find a situation that worked for both of us. And, honestly, my mom let me know where I fell on her priority list as well, because when push came to shove she wasn’t willing to acknowledge that we both had needs and limitations.
Another option is having multiple holidays. Want Christmas just to spouse and self, LW, but still want to spend holiday time with dad? Have one Christmas for spouse and yourself, and have another with dad. My (older) siblings live much further away from our parents than I do, and we’ve certainly celebrated the 25th with our own families, and then the 27th (give or take) all together when the siblings flew/drove in. Just a thought!
LW 649: “We are SUPER POOR so we just HAD to buy a three storey house!!”
Here’s the thing, LW, you are allowed to want things that are incompatible with disability. I’m disabled and *I* want things incompatible with disability – my own and other people’s.
But this? This is bullshit that makes you feel better about not prioritising your father’s comfort. Stop it.
You bought this house because you wanted it and it works for you in all the myriad of ways houses need to – price, location, space, whatever. That’s allowed. You are allowed to prioritise yourself over your father.
But given that you have made that choice – thoughtfully or thoughtlessly – you now need to figure out what your next choices are.
Given that you CHOSE a house you KNEW your father can’t get around comfortably, you now have to choose whether to still have your father visit you there, and whether that will mean moving a bed downstairs or a living room upstairs or shelling out for a hotel nearby. Or whether to visit him, or whether to just talk on the phone. You set up the situation, so it’s your job to make it work.
As Elodie said, you don’t sound like you want to expend any time or energy on your father at all. And that’s a valid choice. But “I just want him to stop being disabled at me!!” isn’t.
GustyFlawless, I agree that this problem is one the LW needs to deal with based on the situation as it stands now, but I don’t see how it’s helpful to shame or attack her because of the financial choices she’s made. She knows her finances best, and whether she’s poor or not, I don’t think it’s up to us to make moral evaluations of her past purchasing decisions.
Yeah, 3-story house doesn’t necessarily mean expensive depending on the age of the house, its location, when it was last lived in, who you bought it from (for example: was it a foreclosed home purchased from the bank? Those are cheap, but yeah, usually fixer-uppers. A friend of mine bought a house like that for literally $1000, so that part rang incredibly true to me).
Right? I mean, there are neighborhoods near me where you can get a tall skinny-ass 3-storey house for $20K, not foreclosed or anything, just that’s what houses cost in those neighborhoods.
You cannot, I repeat, CANNOT get a one-storey house, or even a split-level, in those neighborhoods. They don’t exist. The most inexpensive one-storey houses I know of in the city are around $200K, and they’re usually older duplexes or triplexes with narrow halls and tiny bathrooms that suck if you use any kind of mobility aid.
You don’t know the LW’s finances or the real estate situation where she lives. There are a lot of places where the only affordable housing is stuff built upwards on narrow lots, because land (as it turns out) costs a pretty penny.
Remember when I said “you are allowed to buy the house that works for you finances and location and whatever, and not prioritise other peoples wants or needs”? Because it’s, like, RIGHT THERE.
But that doesn’t mean it’s not a choice. And it’s disingenuous and intellectually dishonest to pretend that ‘it just happened this way’ or ‘we didn’t have any say in the matter’. Own your choices, and live with the consequences.
Also, it’s actually pretty shitty and erasive of, um, ACTUAL POOR PEOPLE.
Sorry. Nesting is dead, so reply is here. 😦
I….have real problems with the term “actual poor people.” I have this problem even outside of this particular response to this particular letter, where we really don’t know the circumstances. Rents may be higher in the area than the cost of a repossessed house in that neighborhood. Fixing it up may actually be cheaper. It happens. The cheap houses may be the three story older ones because the NEIGHBORHOOD is cheap, and that is what’s there.
But, beyond that. Who are the “actual poor” and who polices that? When I hear people saying someone can’t actually be that poor because they have X(where X is a cellphone, car, refrigerator, house, or something else entirely) I tend to get a little agitated.
You can be poor enough to be couch surfing, but, someone says you can’t be poor because you still have a cellphone and a car? In S. California, how else are you going to be able to get a job and get back on your feet?
Can’t be poor and have a refrigerator? How do you store food, then? Are you supposed to eat out all the time or only make singe portions? That is more expensive.
Have a house and you can’t be poor? There ARE places where places to rent are either not available or more expensive than a house if you are willing to take a house in certain neighborhoods, of a certain age, or in a certain degree of disrepair.
Lots of people are poor, and some are just scraping by, and their choices may not look like your choices because you don’t know the variables they had to choose from. You have limited information. You don’t know. You aren’t there.
Yes. Everything is a choice. Sometimes the choices are hard. Maybe you would have chosen something different, but, it’s really hard to say.
EVERYTHING Jenna said. Also, at least in my part of the USA, accessible housing is FUCKING HARD TO FIND even if you need it personally for yourself, let alone for someone who doesn’t actually live with you. [Insert tale-of-woe regarding sawed-off kitchen table as ramp here. Accessible-housing issues were a core part of both of my MSW internships, so I know very very well that it’s not like you can just go and buy a house that a wheelchair user can actually spend time in, at least in the area where I live.]
Hell, when Spouse and I were househunting, we were actually prioritizing “theoretically [a person who was very dear to us and who uses a wheelchair] could come visit us here!” in both the purchase and the (woefully incomplete) remodeling of the house we bought. And we rejected A LOT OF houses on that basis, most of which had much less wrong with them than this one in relationship to the money.
And even this house…? Is not currently accessible as it stands because of problems with the door at the entrance-with-no-stairs. Has narrow enough passages in some spots that I don’t know if a wheelchair would be workable or not without considerable additional remodeling. It at least has the possibility of entrance-without-stairs, we have widened the bathroom doorway enough that it theoretically works, but it could still theoretically relegate a chair-user to the kitchen/back bedroom (currently unuseable storage room)/dining room/bathroom part of the house only.
(We’ve also had problems near me with newer housing developments blatantly violating the ADA by conveniently finding that ramps break some rule or other of the housing development. So even the new stuff that’s supposed to be accessible/visit-able still isn’t.)
I think it’s a little inappropriate to make judgments about how the LW has chosen to spend their “shelter budget” when we don’t have any context for this decision. We can’t say if a three story house was a more or less expensive option for the LW because we don’t have info about location, etc. We have to assume in good faith that the LW bought a house she could afford that met her needs (or will in the future after renovation.) A major financial commitment like home buying can leave anyone temporarily cash-poor, even if the purchase was planned and budgeted (which is not always possible, and again, we don’t know what the LW’s circumstances surrounding her home purchase were.) I like the rest of your comment, but I don’t think we should be judging the LW’s house-buying decisions here.
Me: Please don’t pretend like you didn’t choose your house. You are morally within your rights to buy whatever house you like and works for you, but if that hurts disabled people in your life you need to be in charge of figuring out how to make it work for them, and pretending you had no choice abdicates that responsibility.
Five different commenters: WOW that’s SO INAPPROPRIATE and UNFAIR to tell people what house they should buy!!!
Literally, that’s what just happened.
And I’m saying this for the third time, because I really want to believe that the Awkward community isn’t a awful as it’s acting right now, but I have to tell y’all that I am seriously disgusted by the amount of disableism in this thread. Some of you need to really examine your motives in this context, because as a disabled person what a lot of what is being said fundamentally boils down to ‘I do not want to have to see or hear or think about disabled people because they make me uncomfortable’.
GustyFlawless – I appreciate that this is obviously a subject very close to your heart, but if five different people have all stepped forward going ‘woah, you’re being too harsh in your phrasing there!’ and your response is to claim that you were not that harsh because you never said those things and people should not read it that way, you should perhaps back up and take that as an indication that whatever you intended to write, it did not come out that way. Meanings can be both incorrectly inferred and implied, but if five people have all stepped forward with the exact same interpretation of your words – which you claim is the wrong one – it suggests that what you wrote is not implying what you’d hoped it would.
Do I need to dig out my credentials as a cancer survivor on disability leave? Do I actually need to talk about taking in boarders to make ends meet? Do I need to prove that I may have an opinion here?
You are reacting like you are the only disabled or poor person here, and I swear to you as someone who reads here often and has heard the stories, that you are not the only one who is disabled and may have an opinion.
Most of us would only like you to consider that you do not have perfect information about other people’s choices. No one does.
Give the people around you the benefit of the doubt as you would probably want them to do for you.
That is all.
This subthread discussion about the cost of housing is escalating completely out of proportion. Everyone WALK IT BACK or I will close comments.
I’m sorry. I permitted myself to get riled up. I will stop.
Thank you for all that you do, Captain and I will try not to make messes for you to clean up.
Much appreciated. I realize a lot of contentious topics and sore spots are intersecting in these letters.
Also, whatever choice was on offer, the choice has already been made. The house is bought. The LW already lives in it. Excavating those financial choices, auditing what else was available, arguing that this was the ONLY affordable house…who the fuck cares? They live in the house they live in. It’s not a house that their dad can, under current circumstances, be comfortable in for an overnight visit. So the question is, what do you do now? Gutsy, that’s all you have ever said here. Own the choice, and make it work as you can, but own the choice and the priorities and don’t pretend they are different from what they are. One of those priorities might be “cost.” Okay then. The LW prioritized a place they can afford, and there is nothing wrong with that. But then maybe their Dad shouldn’t stay with them, ever, and the fallout of that is something they all have to work through as a family.
My boyfriend’s mom probably could not climb the stairs to our apartment. We live in Chicago and she lives in Texas, she’s visited once in three years, so it’s normally not an issue, and it wasn’t enough of a priority to make us choose a different place to rent. When she visits town, she stays in a hotel, and we find activities to do that are on the ground floor. Or we visit her. But we don’t not have her visit town because of stairs, and we’re not mad at her because she can’t climb stairs (and she’s not mad at us because we live up some stairs). When a hotel or us traveling there is not affordable, she/we don’t visit. The LW in 649 has a very tangled web of ideas of family, hospitality, what the holidays “should” be, closeness, and yes, ABLEISM. Saying that ableism is part of the person’s thinking isn’t saying that they are automatically terrible person, it’s saying “you’ve got a bunch of different threads mixed up here, sort them out.” Some things that have always been assumed in this family need to be made more explicit, like, from the Dad: “Staying at your house is terrible and not an option for me” and from the LW: “then let’s skip it this year, but I promise I’ll do x, y, and z to make your next visit better” could be one solution.
GutsyFlawless, this is a response to your second comment, about “actual poor people.”
The people replying to you rightfully take issue with your snide implication that the LW should have just bought a smaller house- which has no correlation to price of house. Implying that the letter writer can’t suffer financial hardship because she is a homeowner and therefore can’t possibly also overlap into “actual poverty” (which your comments regarding “choices” and “consequences” indicate is what you think) is dismissive of her legitimate financial hardship (and that of many others). You don’t get to judge who is “actually poor” or not. None of us understand an individual’s finances better than that individual, and implying that LW should have simply bought a smaller house so that she could theoretically afford to make very expensive accommodations is unhelpful. The house is bought, it can’t be undone, and we have to take the LW at good faith that she made the appropriate housing choices for the people who actually live there.
GERTI, find a different thread to comment in on a different day. You’re cut off here today.
I think the family wedding activities sound like fun, but different strokes for different folks.
It’s not a question of whether they sound fun, it’s a question of whether LW’s partner is physically able to do them. I think it’s a little insensitive to paint this as “different strokes” when LW and their partner might really love to be able to participate in these activities, but cannot.
I’m not Tiffany, but I think the “different strokes” thing refers to Elodie’s reaction to the activities as being incomprehensibly weird, not to the LW’s inability to do them.
Oh gosh, I think you may be right! Tiffany, I’m so sorry if I misinterpeted you!
Agreed. NONE of the things listed in the letter strike me as unusually bizarre (driving long distances to see relatives, destination weddings, enjoying athletic activities like paintball or hiking). Many of the things sound much like my family, in fact (everyone lives far apart and travels for holidays, family 5K runs, etc.). So, I don’t think its appropriate to act as if their preferred activities are somehow totally insane and unenjoyable, per se. The problem is in that LW and her husband physically can’t do them, and they’re getting pressured to do them anyway. And the solution isn’t, I don’t think, to try and convince the family that their fun activities are stupid, mean, and actually impossible to enjoy on some higher level. It’s to have a frank talk about the disabilities that are there and set realistic expectations for participation, nad then to try and work out a compromise situation so that some activites can be sat out, some activities can be substituted, and some activities can be modified.
as being incomprehensibly weird, not to the LW’s inability to do them
First: Alien as in alienating, not weird.
Secondly, those aren’t two separate things. Everything about those activities does sound awful if you tire easily, get injured easily, or otherwise have some condition that makes doing them difficult/painful/impossible to do.
True, but the tone seemed to me (and another commenter up higher) to be, “Only idiots want to do physically active stuff, all of which is crazy dangerous!” It’s crazy dangerous (or at least exhausting) to people with disabilities, and yes, they should absolutely be taken into account when planning events. I TOTALLY agree with the drill-down script, and I can’t imagine NOT planning a huge event with plenty of seating and resting space for people who can’t get around like athletes/don’t have a ton of energy (for heaven’s sake, doesn’t LW2’s husband’s family at least have some elderly members who don’t spring around like rabbits?). But the way it was put kind of came off like “People who like doing bodily exercise-type things! Feh!”
Yes, just…people who like doing bodily exercise-type things are rarely the people who get ignored in event planning.
olives, thanks for this point. It occurs to me that people who are “able-bodied” are kind of the “default person,” so anyone who can’t do what they can do becomes “other” – I like that Elodie kind of flipped that on its head by calling out the family as the “aliens,” because it changed who the “default person” was in the story, and changing the default person seems to be an important part of these kinds of conversations (and sincere apologies if any terms/language are used incorrectly here, I’m new to these issues and the language around them).
This times approximately one million.
“Carrying your father up stairs is not a burden. It is the job of one who has both stairs, and a loved one who cannot use stairs.”
Elodie, this warmed the cockles of my soul! Also thanks for giving me language for how my life is right now. My partner has chronic pain. I feel like we get funny looks in public sometimes because if he drops something I pick it up, I carry all the bags when we’re shopping, and when he goes up stairs (god, I’ve learned to dread stairs) I provide extra support. It embarrasses me sometimes cause I feel like it looks like I’m waiting on him or controlling him. I never hesitate doing it because fuck appearances that’s how I show love. But, I’m not even doing anything above and beyond; I’m doing my job. I have nothing to be embarrassed about. Why are people, including me, so weird about accommodation?
This gave me all the feelz, gallantqueer, because it’s similar for me and my partner. Fuck appearances. That’s how you show love when the person you love is struggling with someone.
Oops. I meant “something.” 😛
Partners of people with chronic pain who look after us in these ways: we love you more than we can say for these things, and you are wonderful.
Coming here to nth this ❤ ❤
My husband doesn’t struggle with chronic pain, but he does have a limited energy budget for his mother’s spontaneous, energy-sucking shenanigans. But because he has a hard time standing up for himself, as the dominant personality in the relationship I sometimes do it for him. (I’ve learned that when I don’t, I have to deal with the emotionally drained husband later.) After putting my foot down a couple times on things my MIL tried to plan for all of us, she said to me, “You coddle him too much.”
Really? I just shrugged it off, because you know, it’s MY marriage and not hers. I appreciate that she’s trying to goad her son into being the best husband and father that she thinks he can be, but just the day-to-day logistics of his job as a stay-at-home parent are hard enough on him; I understand if sometimes he just needs some quiet time at home. Well, quiet-ish, because our 9-year-old and 18-month-old both have a talent for being INCREDIBLY LOUD ALL THE TIME.
I feel like the response to LW#1 does sort of ignore some financial issues here. I myself live in a tiny 3rd story walkup because…I cannot afford anything larger/without stairs. It sounds like a lot of the accessibility issues here could certainly be solved with more money, but that money may simply not be available. Yes, good solutions would be: buy a really comfortable bed and put it on the first floor/build an extension on the house so there’s a first floor guest bedroom; put in a stair lift; purchase nights at a hotel or B&B for the father; buy a more accesible house in the first place; installing more railings; etc. But…we don’t all have the money to do these things! Sooooooo many problems in the world could be solved with lots of cash, but the reality is that LW simply may not have that cash or may have other really important things to spend it on (as we know zero about the rest of her budget). It seems like one really good option here, if one had all the money in the world, would be to fly everyone to a nice, neutral, very accessible location for 3 days over Christmas, and then everyone flys home and enjoys the rest of the vacation in peace. Again, this may or may not be possible! And I find the suggestion that maybe LW needs to consider quitting her job (!) because she should have more vacation time/money/emotional energy to spend with/on her dad rather bizarre. First of all, we have no idea if LW otherwise loves her job (all jobs have tradeoffs and stresses, and on balance this might be a great one). And even if she hates hates hates her job, we don’t know her other skills or the job market in her area or whether it would be in any way possible to find another job that would be less stressful, pay better, and have more vacation time (wouldn’t we all love that!).
Regardless, I do think that absent some sort of history of abuse, you do owe it to your dad to make sure he is not alone on Christmas. Since one plane ticket is already being purchased (your dad to come see you), perhaps that money could go toward you and hubby visiting your dad for just a couple of days. I don’t think you owe him two weeks, but this would allow him to stay in his presumably-accessible and comfortable current living situation while still getting to see you guys and not spend the holiday all alone.
That is a great suggestion.
I feel the same way about the financial issues. I thought that the response to LW #1 was great overall, but did seem to overlook the financial issues at play.
For example, when I read this:
“There’s this idea that disability is a burden, that accommodating disabilities is ‘extra work,’ and that disabled people are being deliberately annoying by existing in the same spaces as you.”
I thought…well, accommodating disabilities often *is* extra work–even though it shouldn’t be, because society should have been set up in a more accessible way in the first place. And that work often costs a lot of money, which means that it’s a more significant burden for those who have less money to begin with. It’s especially shitty for people who are both poor and disabled, and have trouble affording the accommodations that they themselves need.
None of that means that disabled people are being deliberately annoying, or that their requests are unreasonable. And it doesn’t change the fact that the LW needs to decide either to find a way to accommodate her dad, or to tell him that she needs the time alone–clearly, what she’s doing right now isn’t working for either of them. But if she had more money, it would be a lot easier to throw some money at the problem. That’s a real, valid issue.
Exactly — I felt like Elodie’s answer was really mean, basically turning every disability advocacy gun possible on the LW because she’s the person standing next to someone disabled. I don’t think this is how world change gets made? Right, good, take EVERY bit of disability advocacy you know and aim it like a firehose at caregivers and the immediate family of people with disabilities, the people who are RIGHT UP AGAINST every intersection of “accommodation” and “ha ha just kidding fuck that” that our present day society has to offer. How many accessible homes do you think are on the market for homebuyers? A lot? yeah, you’d be wrong. How much do you think retrofitting a house to make it accessible costs? A little? yeah, you’d be wrong.
The immediate family of people with disabilities (and caregivers, including paid ones) are really easy targets — like disabled people themselves, they skew poorer than the population at large, and they skew female. Fun! LET’S GET OUR KICKS IN.
Moderator note: “Innomin,” if you put forth a disagreement with Elodie’s post that is free of personal insults to Elodie, it just might make it through moderation! Maybe try addressing your comments in support of the LW directly?
This. So much.
I have several people of varying levels and kinds of disability in my life. A son on the spectrum, a husband in cancer treatment, who cycles between nearly fully able bodied, and unable to sit up in bed without help, a long-standing friend who uses an electric wheelchair, and a mother with Alzheimer’s. However much I love these people, and however much I want them in my life, sometimes providing them with the care and accommodation they need *is* work. And sometimes it’s more work than I can manage.
When I visit my friend for a three day weekend, she dismisses her aides, because it’s a break for her from sharing every weird bit of her life with paid help. I understand this, and I’m generally willing to do it. But this last summer, she had me up to “give me a break from dealing with the cancer” – and she still dismissed her aides for the weekend. And as much as I know she meant well, that weekend was no kind of break for me. Because if your weekend guest is doing the work of three paid people, working 10-12 hours each, that’s not a relaxing weekend. Under normal circumstances it’s work I’m glad to do – as Elodie under glass said, part of having a loved one with a disability. But it has become really easy for her to forget that it’s work at all, and she came perilously close to pushing me into a breakdown, because she couldn’t see how much effort I was making, and any attempt to address this got right back to it being awful to imply that someone else’s disability is a burden to you.
Accommodating any guest, or getting together with any friend requires some amount of taking their needs and wants into account. Disabilities affect what exactly those needs and wants are, but it doesn’t change that basic equation. I think changing the conversation around disability, so that the conversations could be more frank and less fraught would do a lot more good than looking for who needs the guilt cannon aimed at them.
“caregivers and the immediate family of people with disabilities, the people who are RIGHT UP AGAINST every intersection of “accommodation” and “ha ha just kidding fuck that” that our present day society has to offer.”
Not really. Those people right up against it are disabled people, not family members who only see us a few times every year and describe us as a burden. It’s not even the non-disabled people who live with and support us. It is us.
How do world changes gets made? Well, there’s the law, and there’s many different levels of cultural change, like representation in the media, shifts that make businesses feel it’s in their best interest to change etc.. But there’s also how individuals regard and treat their friends and family members. That’s a huge one, because it affects how a person sees themselves, it ripples out through communities, provides very direct lessons to children and so forth. Consider sexuality and how much it can matter whether a queer person is supported, or not supported by their family. That stuff can be world-changing. Or it can stop the clock.
I sorry to pick on your post Polychrome, I think it was the most explicit, but I’m really disappointed in the number of folks who are basically saying, “The world is dreadfully unfair on disabled people, but there’s nothing we, the world, can do about that!”
It could well be true that there has been literally nothing that the LW could do in order to make her past or present home even slightly more accessible to her Dad even if she wanted to, but that really isn’t the point. The LW doesn’t want her Dad there this Christmas – she describes what she wants involving husband and cat and that’s great. But she’s justified that in terms of the pain in the arse disabled man. That’s the thing that’s not okay.
I agree, and although I also really loved Elodies response to both LWs, I would like to bring the physical aspect of helping disabled people into consideration as far as LW1 is concerned: Although I am able-bodied, I am quite a small and not exactly physically fit woman. I live in an apartment on the 2nd floor, no elevator. So if I were to carry someone, I would have a very, very, very hard time unless they were of a much more fragile constitution than me. Even if I were (and I really hope this never happens!!) to carry my boyfriend – who is a person I love the most and would do anything for, and is not a heavy man at all – more than once, it could take serious physical toll on me, with a possible danger of life-long consequences (due to the issues with my back), but in any case it would be really exhausting. In such case, the feeling that someone becomes a burden has absolutely nothing to do with ableism or with other relationship issues at play, but with the sole fact of physical tiredness. (Btw, once I “spilled” a person from their wheelchair because I was not strong enough to hold it on an uneven surface, it was scary and traumatic as hell and I was really lucky that the person was “only” in shock. Therefore I would never commit to care about a loved one should they find themselves in such a condition, exactly because I love them and could not live with the fear of putting them to danger.) And I can really understand that if the LW has an exhausting job all year long, she wants to not feel exhausted for that very limited amount of her vacation.
Of course this is not to question the validity of the advice, which I find great, and Elodie as well as the commenters suggested a number of options how to deal with the situation. I just wanted to second the opinion that accomodating disabilities *is* extra work, whether financially or physically, and I hate ableism and the fact that stairs still are the default thing, but I disagree with presuming that partners or other people from their surroundings should just not pay attention to, or somehow magically overcome, their own physical limitations to take care of disabled people.
Thank you. I’m sorry but I think it is unreachable to ask someone to quit their job, and to spend money they don’t have. It sucks and it is unfair but unless the Dad has deep pockets, or the LW strikes oil/finds gold/discovers cold fusion, I’m not sure there’s a lot that can be done.
Just as her father isn’t be disabled *at* her she’s not being poor *at* him, and I really doubt she choose her house/apartment purely out of spite. They may have been the best she could afford at the time.
Elodie says in the post, at length, that one option is for the Dad to not visit for the holidays.
In the meantime, the LW has some things to sort out in how they make & perceive the decision, one of which is ableism. That doesn’t make the LW a jerk. That doesn’t shame them for being poor. That doesn’t mean they bought the wrong house (for themselves). It’s not a competition of poverty vs. disability. If the LW doesn’t want Dad to visit, cool – that needs to be communicated. “Dad, this year, spouse and I want to spend Christmas alone. We’ll see you _______.” Or “Dad, it’s not going to work this year. We’ll come to you for a day, though” instead of “Dad, we would let you visit, but the burden of carrying you up the stairs all the time is really exhausting to me, sorry.” Own the choice, but don’t make it the disabled person’s fault for not fitting into your house or your plans.
If the LW does want Dad to visit, something needs to change in how they do lodging, either now or in the future. The status quo wasn’t working for anyone. In the meantime, Elodie is asking the LW to make a mental shift about viewing accommodating their dad’s disability from a terrible special out of the way resented burden to just a thing you do when you want to include people. How is that bad?
Because Elodie’s advice completely strips the Father of any sort of responsibility or give in the situation. The house isn’t new. He KNOWS it’s not a good fit for his needs, but instead of compromising/offering something different he seems to want insist on staying in a place he doesn’t like that makes him unhappy, and puts a great of strain of the people who live in the house.
Now I know this isn’t intentional. I know that this isn’t the Dad’s fault, but I’m not going to villianize or guilt trip the LW, both things Elodie’s advice did, and tell her what an awful person she is for not wanting to spend her one vacation carting her Dad up the stairs and listening to him complain. .
Elodie’s saying that one option is for the Dad to not visit for the holidays is being lost in the overall message because her post also includes such appallingly abusive gems as, “Carrying your father up stairs is not a burden. It is the job of one who has both stairs, and a loved one who cannot use stairs.”
Saying that if you love someone, you have to fulfill whatever needs they have is abusive enough, but demanding that you also define this as not a burden, but simply your job takes it to a whole new level. And all of us here know that our society is very gendered in who we hit with those arguments.
This gives me a lot to think about regarding my own family members and the things they need in order to make visits work for them. It’s also reminded me how much easier some of our problems have been to solve because we could spend some money on them and much harder they would have been if we hadn’t been able to afford that. Thank you.
Re LW 1, I have a similar (but nowhere near as distressing) issue with my mom. I have a small apartment, and I have cats and dogs. She is allergic to everydamnthing. I tell her that I would love to have her visit. I am happy to accommodate her weird food fetishes (I have my own, so that’s not a judgment!), even. But, she has to bring her own air mattress and bedding. I just cannot provide a sleeping space that will be suitable for her, allergen-wise, comfort-wise, or anyway-wise.
Re LW 2, if it were me, I’d ask what the festivities will encompass, then RSVP accordingly. “Sorry, but I/we cannot participate in X activities, so we won’t be attending.” And that’s where I’d leave it. I just have no interest in, or energy for, back-and-forthing games or forcing other people to accommodate me. There will inevitably be annoyance at the other end, but the annoyed folks are going to be annoyed no matter what; it’s like an avocation for them. Besides, if your absence is so damn upsetting to them, then maybe they could try harder to include you?
Yes, yes, yes to Paragraph 2. I am not obliged to explain my personal limitations to other people, especially if I’ve tried repeatedly already and been brushed off or put down. “I’m sorry; because we can’t participate in [activity that will come with a fun hangover way way bigger than the potential fun involved], we will not be attending; felicitations” is a gracious refusal. And anybody who chooses to take it badly is basically saying “HDU have a disability” or “Oh, you’re making it up,” and future relationships with people who do that can be assessed accordingly.
LW#2: I hear you on the frustration around the wedding planning, but I would try to keep in mind that brother-in-law is probably not making most (or any) of these decisions AT you. For example, you’re upset about a Catholic mass. Well…in the Catholic religion, long masses are kinda the thing, and it seems like a pretty big ask to say “Could you please give up your religion for me.” Because for the Catholic folks I have known, having a Catholic ceremony/mass was a BIG deal. For them, it was not a matter of choosing among a bunch of possible ceremonies and picking one that seemed nice. I think the key here is recognizing that this isn’t your event, but at the same time, you can only do what you can physically do. For example, your husband could say to his brother: you know I can’t physically play paintball, but I will be happy to meet everyone for drinks at the bar afterward. Or, the bachelor party as a whole is simply going to be more than I can handle; we would love to have you over for some Champagne to celebrate your marriage on another night. Or whatever it is that he/you guys can do. Similarly, he may be able to say: “I am so happy to be your groomsman, but I will need a seat to sit in for parts of the ceremony because I cannot stand for two hours.” Now, if brother-in-law then chooses to throw a fit and say “NO I WANT MY WEDDING CEREMONY TO HAVE NO ONE SITTING DOWN EVER”, he is being a dickbag and you can make decisions from there. But I think he should at least be offered clear options of “Okay, that’s your plan, here’s our counteroffer of what we can actually do” and see if he can work that out. I think it would help a lot if you guys were proactively offering alternative options to whatever is going on that you can’t do. Because it’s not inherently evil to like walking on the beach or playing paintball simply because not everyone in the world can do those things. What is the response if you say “Hey, the amount of driving at Christmas is really hard on us. Can we do the holiday at our place instead this year?” Or, “Walking on the beach isn’t going to happen, but I’m happy to stay back and watch the toddlers/baste the turkey/etc.” Or whatever suggestions you have that WOULD work for you guys. I don’t know you fully, so I don’t know what those alternatives are! But I think it would go a long way to suggest legitimately fun and workable alternative plans rather than just being mad that they like doing athletic/high energy things.
True. But perhaps the family, knowing the brother has these limitations, could have suggested the alternatives in the first place, to show that they want the brother there? Otherwise the subtext is pretty heavily, ‘We only want you here if you can meet the high physical bar we have set. In other words, we would like a fantasy non-disabled version of you to attend, not the actual you.’
“we would like a fantasy non-disabled version of you to attend, not the actual you.”
If I develop new disabilities, it’s up to me to inform the people whose lives I want to be part of. And if I don’t hang out with them all the time, I don’t expect them to know in detail what activities I like/can do.
But if they want my participation in their lives, then I need them AT SOME POINT to remember that my abilities are not the same as theirs and to do some of the reaching out. For example: “We’re getting married. We’ll be doing some stuff we’re guessing you might not want / be able to do, but we want you to be part of our celebration. Can we work together to figure something out?”
If that never happens, then my regrets gradually get less detailed.
“I’m sorry, I can’t come to your wedding ceremony in the middle of the forest because I’m unable to walk 5 miles. But I’d like to [take you out for a congratulatory meal | throw a small party for you] at some point, if you would like that.”
“I’m sorry, I can’t come to your wedding because of my health issues. I’ll see you at [family gathering].”
“I’m sorry, I can’t make it.”
I think this is totally true, but maybe not totally helpful. I mean, I agree the family CLEARLY has not dealt well with this issue in the past, and in fact probably could have dealt with the wedding planning better too. But…at some point, you cannot change other people. Obviously, LW2 and her husband have the option to decide they are simply going to cut his family out of their lives. But, if they do not want to choose to do that, I think proactively offering positive, compromise solutions is probably the best road to changing the dynamic. Is this fair? No, of course not. But, in a world where we cannot force others to be as kind, generous, and accomodating as we would like them to be, it sometimes goes a long way to practice kindness and generosity ourselves. I don’t think it is going to help the LW work through the logistics OR emotions around the wedding to approach it from the standpoint of “BIL is choosing to be Catholic and having a Catholic wedding in order to exclude us.”
This is excellent advice, and I wish there had been more of this in Elodie’s response to LW #650. Yes, the LW’s in-laws are should be a LOT more sensitive to LW/spouse’s physical limitations. But I don’t think “tell us what you’re doing to accommodate our disabilities that you obviously don’t fully understand” is as likely to create good results as “here are our specific requests that will make it possible for us to take part.” Get the details, and then propose modifications (for the group as a whole, or for LW/spouse specifically) that will make it possible to take part.
Yes. And the response you get to the request will tell you what you need to know about how and whether to associate with the family in the future. My former in-laws expect everyone in their family to attend a summer vacation together, where the core members of the original nuclear family do all the things they like to do. However, none of the things they like to do were things that I liked to do, and I was expected to watch the kids the entire time while spouse hung with his relatives. It was no vacation at all, just a giant burden. I proposed solutions: Let’s just go every other year! Let’s visit family members individually at different times of the year, not during the vacation! Let’s pick a location that also offers things that I like to do! Let’s go, but for just a few days, not an entire week! Let’s get a babysitter to watch everyone’s kids or take turns watching everyone’s kids together! Only to be told, no changes are possible — you can get on board or stay home, Linden. I’m so glad I’m divorced now and have dispensed with that yearly week of sitting in the hotel crying while trying to manage two young children alone.
The point is, some families, like my ex’s family, have their ways and will not change them because they are gripping tight to some notion of family tradition. My ex’s parents still want everything to be like it was when their kids were young, before they all got married and had spouses and kids of their own. Everyone must come for Christmas, no matter how big of a burden it is for members scattered across the entire country to travel at the busiest time of the year with the worst weather. I’ve been stranded overnight in airports across this great nation of ours, lost luggage for days so that I had to keep washing and wearing the same two pairs of underwear, just to satisfy this crazy demand that all family be together at the holidays. It’s been years now, but I’m still enjoying my freedom from all that. I will put my feet up on Dec. 26 and sigh after the ex and my kids fly back East for the miserable pilgrimage without me.
At least your spouse backs you, LW2. That’s the most important part of the equation.
I think it really depends on whether you’re dealing with people who don’t know how to accommodate you or people who aren’t willing to believe you that you need accommodations. I felt like these letters were a lot more about the latter, especially the second one. If the family is in denial about the disabilities, which is unfortunately common with invisible disabilities, then they probably do know things they could do to make gatherings easier, but they refuse to admit it’s important. And that’s where simple, direct scripts like the drill down one are helpful. For people who acknowledge that the disability issues are real, do need to be taken into consideration, but aren’t always sure how or when, then it’s a lot better to suggest options. Those people are also generally a lot easier to deal with, so ongoing problems are less likely to come up. Those are the sorts of people who say, “I don’t really know what your limits are, but this is what I had planned, how would that work for you?” or similar things. Those are the people who take, “Yeah, I really can’t handle that, but maybe X.” well and then next time do not suggest the thing you said you can’t handle. If you’re not sure which sort of people you are dealing with, I’d always assume the easier sort first and give people a chance to live up to that. But if people repeatedly have ignored your information about being disabled and having limits and keep shrugging that off while expecting you to do stuff that is horrible for you, then you’re in the latter situation. And that’s really tough if it’s someone you don’t want to cut out of your life, but who will blame you for not making yourself sick for them. And if you do make yourself sick for them, then that becomes a weapon to use against you, since you clearly were able to do the thing you implied you couldn’t, you must really not be as disabled as you claim, and thus you totally should be pushed to do more things that will destroy your health. The people may be great in other ways, but such people need to be handled very carefully or they can be very dangerous to disabled people. So very firm boundary setting becomes appropriate.
+1 – planning a big event like this is certainly a lot of work and even a contentious couple might pick similar activities because they are accommodating a lot of people and also trying to pick activities they themselves feel strongly about.
If you want to come to the wedding, I think it’s a great idea to make specific alternative suggestions. With the stress the usually comes with planning a wedding reasonable requests for accommodations will probably sound like complaining or unnecessary work to the stressed out couple. Saying things like ‘the restaurant you chose for your 100 person wedding won’t accommodate me, I’ll bring my own food’ is a really nice gesture especially for an event of this size.
I enjoy enormously that you decided to punctuate this post with a gif of the Tibetan sand fox, Desert Queen of Sideeye. And thank you, for making able-bodied me take a sharp look at how she approaches friends and family with disabilities, and the hanging-out-withness thereof. My mum and I used to work Christmas around my gran when she stopped being to do stairs, so she could have a proper family Christmas (in her home) but we would do the planning and the catering and clearing up. We thought we did well on this (grandmother is no longer with us so teachable moment comes too late, sadly) but I can see in retrospect there are things I could have done better.
LW 650: We deal with a similar issue with a branch of my family. Whenever they come to visit, they want to do activities that my sister just cannot do for health reasons. In their case, it seem to come from a place of “if you do this [hike/canoeing/alien ritual] it will make you all better!” Which is untrue and unhelpful and leads to a lot of “Wahhh but we planned this whole big thing!!!” situations.
This may not work in your situation, but in our situation, I am the Lorax, except instead of trees I speak for my sister. I am able-bodied, and I can do all that crap they want to do and for some reason this gives me authority in their eyes. She and I have talked about it and, while we both wish they would listen to her as the authority on her own life and body and wellness, they don’t and may never get it. So when they start in about “let’s go throw ourselves down a hill after a cheese” I say “what fun that sounds like. and yet I have already planned this wonderful day of [x].” In our case, this works surprisingly well and she says she finds it less stressful than having to always be the one to say no. If you have someone in the in-law family who is not an alien, or is at least a kinder and more empathetic alien, maybe they will Lorax for you?
This is such a good tip thatsnotmyname, thank you so much! I will think about who we can get on side to be our Lorax.
LW 650 here.
Thank you so much for answering my letter, Elodie and Team Awkward! Your script for immediately in the moment asking for accommodations is something I will definitely take on board and practice over the coming Christmas period.
I just want to clarify some things for the rest of the commenters: My in-laws are entirely aware of the scope and limitations of our disabilities. Indeed, my partner lived with them until two years ago, and he has been ill for ten years. It is not a case of us not being clear enough. As I say in my letter, my partner is being told not to let me stop him coming to family events when he cannot because of his health, and when he suggests alternatives he is told I am speaking for him.
So while I appreciate the helpful aim of the commenters suggesting we communicate better or meet the family half way by suggesting what we can do, it isn’t actually helpful and I’d really rather you stop. It feels like I am being blamed for other people ignoring my boundaries.
I am asking for ways to manage expectations about our attendance at events that de facto exclude us. Elodie provided a beautiful but blunt way of doing this, and of highlighting our – perhaps accidental – exclusion.
Oh, and I should say!
My partner and I decided that the best way to survive Christmas this year was to take some time-honoured Captain Awkward advice and stay in a hotel near my in-laws for a week, rather than trying to cram so much family and driving into three days. It seemed counter-intuitive to spend longer in a place where we don’t quite feel at home, but the extra time will mean we can rest more so it hopefully won’t be catastrophic for our health.
And it turned out that the best and cheapest hotel to stay in was the Hilton. Thank you, Captain!
I struggled a lot with the reading of this post, because I relate very strongly to parts of the first letter. Specifically, the part about how one can set boundaries with a parent. My father passed away earlier this year, and my mother is struggling quite a lot. She has some health issues (which I’m happy to accommodate as best I can) but primarily is struggling with grief and depression. I often feel like a horrible daughter because, for my own reasons, or because of who I am, I just can’t be with her as often as she needs me to be. I relate all too well to the LW who desperately wants the holiday break to be an actual break, because time visiting my mom is often very tiring or stressful. I love my mom dearly, but we are also very different people. She needs me desperately, for companionship and assistance, but I have a husband and a job and even if I had neither of those things I couldn’t visit as often as she’d like – I just couldn’t. And that makes me feel like a truly horrible daughter.
The narrative with many people seems to be – you do what you need to do for family. But what if you just can’t? How do you set boundaries in the face of that?
I guess some of the response hit me rather badly because I was bringing my own narrative to the table. I don’t want to ignore the abelism issues, at all. But the response did also seem to entirely ignore the financial restraints that the LW seemed to indicate were there. And some of her complaining seemed rooted in exhaustion to me – exhaustion from a difficult job with little vacation time maybe, or from her own grief, or from the details of a life we can’t guess. Or from a parent who is draining to be around (outside of the disability issues). Or from the guilt of knowing you aren’t living up to (or maybe even CAN’T live up to) a parent’s expectations.
Again, I’m bringing my own baggage to the table here, so I may be misreading things entirely.
No, I feel the exact same way. I didn’t want to comment initially since I figured “Well, maybe it’s just MY issues,” but this narrative that dictates children need to rearrange their lives/enter financial hardship/bend over backwards 24/7 for their parents is really destructive. I don’t want to discount the abelism, but I felt like it was almost a derail, since the issue really doesn’t seem to be “I can’t believe my dad can’t just walk up my stairs, what a lazy jerk, I completely refuse to spend reasonable time and energy helping him,” but rather, “My dad feels entitled to my space and complains endlessly because I cannot afford, mentally or financially, to accommodate his every (quite legitimate!) need.”
I feel the same way, as one who often struggles with the “but this person needs X thing that I am having a hard time providing.” I really did not get the vibe that the LW thought her dad was being disabled at her from the letter, but rather “how do I navigate this situation.”
That’s how I read the first letter, too, and I was really surprised by the strength of the response, particularly since it seemed to assume right of the bat that LW has some ableism she needs to confront and further advising her to make changes that she may not be able to afford (for a variety of reasons). To me, it reads like LW has a tough relationship with a demanding parent who isn’t very understanding of her own difficulties, and she’s obviously struggling with the whole ‘bad daughter’ label. The response only serves to reinforce that, while tacking on an *ism.
Hey Amy – My mom got divorced last year, and not that it’s same as being widowed, at all, obviously, but it seems like I had to navigate a lot of the issues you’re describing with her when it first happened. The thing that helped most was setting up defined things that I *could* do for her, at regular intervals, that she could look forward to, so we weren’t involved in the constant push-pull of “can you?” “no sorry, I can’t” that is guilt-inducing for me and sads-inducing for her and exhausting for both of us. They included, at the time, a phone call a few times a week at a particular time (on my commute home when I wasn’t really able to do anything else anyway), regular appointments to do an activity we both enjoy together, and visits on a regular schedule that I was able to commit to without totally upending my own life or neglecting my work or my husband. The times I needed to say “no” became a lot easier for both of us when I could back that “no” up with “no to X, but remember I’ll be there in two weeks for Y.”
Last thing: I also encouraged her to go back to a hobby she’d dropped when I was a kid that had a social component, and as she got more involved there, she was less reliant on me as her only social outlet, which has also taken some of the pressure off. Hope that’s helpful. And I don’t think Elodie intended to say that you (or anyone) need to do anything & everything for family without regard for financial/emotional/physical toll, but rather that you make sure your “nope, can’t do that one” isn’t stemming from ableist thinking/assumptions. Setting boundaries with your family because you only have so many spoons to give them is one thing; setting boundaries because you’re annoyed they’re not able to bend over and pick up the spoons you were going to give them off the floor where you threw them is something different.
You have some excellent suggestions/points. Thank you 🙂
I think a lot of commenters are reading very, very different things into the OP’s letter. There’s a lot of stuff about the advice that should probably be different based on what’s actually going on.
For example: is the OP the one saying that holidays need to happen at her house, but then getting annoyed at her dad’s pain and hand-waving it away as something he should just be putting up with? Or taking her dad’s genuine expression of pain or frustration as something meant to be barbs and criticism of her? That situation definitely would fall under the ‘examine your ableist privilege’ advice umbrella.
If it’s the dad insisting that he comes over, her warning him and saying it’s not an ideal situation given his disability (and maybe even suggesting alternatives), her trying to accommodate to him as best as her finances and energy allows, and him still being vocally unhappy at the situation? Then I think the advice should probably have more of a ‘how do we brainstorm compromises and alternatives, or scripts for setting boundaries’ take.
I think the original letter has plenty of evidence to support either interpretation.
I may be giving the benefit of the doubt because all posts on Captain Awkward are usually all about boundaries and self-care, but I think the reaction came from the LW not seeming to demonstrate a ton of empathy for her father or to his disability. The response does make allowances for if there are emotional abuse issues that weren’t covered. . .because, as it stands, she doesn’t really demonstrate that he’s doing anything all that terrible other than being in a lot of pain and discomfort and not being totally chill about it. When you write, I can tell that you love your mom but feel overwhelmed by all she seems to need from you, and that is incredibly legitimate and you should not feel like a truly horrible daughter for having a life and your own needs. I think if this had been the letter it would have gotten a very difference response.
Honestly, I’m a bit uncomfortable with the response LW#1 got. (Sorry Elodie). I will freely acknowledge that it’s pressing (big, red) buttons for me around how to manage (or reschedule, postpone or otherwise avoid) a parental visit that will be hard work when already physically and emotionally drained, and whether it’s OK to take that kind of step for oneself or whether that equals being a bad child; to the extent that I have just spent much of the evening feeling that I must be a crappy daughter myself if I’m not prepared to do whatever it takes to meet my dad’s needs – though in my case he doesn’t have a disability and it’s his emotional pain that I have to carry around. (Unsurprisingly this train of thought put something of a damper on the office Christmas party.) Obviously, it’s not about me, and that context of my own situation may be making me see things from a skewed perspective. And I do recognise the privileged position I’m coming at this from, as a non-disabled person; I can only imagine the massive unending crappiness of a world that just doesn’t bother to meet your basic needs, and imagining it doesn’t come close to living it.
So, I do think it’s completely reasonable to recognise and raise the fact that the LW’s father’s disability will always impact on his visits and that anything which can better accommodate his needs will potentially help make those visits a better experience for everyone – but I do feel that what the LW was asking (effectively, ‘I don’t feel I can manage my dad’s upcoming visit; how can I discuss this with him?’) has fallen out of focus and she’s been quite heavily criticised. LW, please don’t feel you’re failing to meet some sort of Good Daughter Standard because you live in a house with stairs in it, or because you’d quite like to spend this Christmas curled up on the sofa with your cat. You sound exhausted, so whatever you do please try to have as relaxing a break as you can.
My dad suffers from chronic pain and also mobility problems, so these letters have given me lots of things to think about.
I think the first response comes down awfully hard on the LW for things that she may be able to do nothing about in the immediate future. This blog usually does a great job of acknowledging that throwing money at problems may not be feasible for everyone and providing other workaround suggestions. Many of the suggestions for making her home more accessible to her dad cost money (ramps, stair elevators, possibly remodeling a ground level bathroom and bedroom, an expensive good mattress) which she stated she doesn’t have in abundance at this time. She also doesn’t mention how frequently her father (or other company) visits or the duration of his stays, which I think is important for her to consider when doing the cost-benefit analysis of putting in expensive retrofits to a home. Is it more important to have a functional kitchen than an expensive guestroom mattress? Is getting the electric up to code a higher priority than installing a ramp? Only LW can decide what’s right for her and her family living in the home.
There needs to be a dialog between the LW and her dad about how to handle his visits in the future. Maybe dad would be most comfortable in a hotel and he and the LW could split the cost? Could dad pitch in some financial help to renovate the house if he plans to visit frequently? Could LW make her and her spouse’s bedroom a temporary guest room when her dad visits? Could dad make fewer visits until the house is more livable and the LW visit him instead? Is the LW at a time in her life (busy work schedule, home renovation) that frequent visits just aren’t something she can do? I agree with other commenters that it seems a bit jerkish of the LW’s dad to keep insisting on visiting and then complaining (even rightfully) that she cannot accommodate him, so a conversation needs to happen where both parties’ needs are discussed and acknowledged.
649 – He wants to feel accommodated, you want Christmas to be restful and easy to organise. Either way, it’s on you to find a comfortable way to host your dad / put him up in a hotel / visit his house / split your 2 weeks (My Beloved usually only gets 2 days!) between a quiet Christmas and a visit with your dad for New Years or whatever. It’s not about him being a burden, its about how best to meet his needs when you spend time together.
I know it’s not always straightforward when you’re time-poor and on a budget, but talk it through with your dad, and make it clear that you want to accommodate him as comfortably as possible. Lay out two or three options that you can work with, and see if he finds one of them agreeable.
650 – Your family sound inconsiderate to the point of awful. I mean, a destination wedding sounds like an unreasonable amount of inconvenience for anyone, even those with time and energy to spare.
Do they really understand your disabilities and all the decision-making that’s involved in whether or not you can afford to attend events? I think you should risk rudeness in making it clear that it is not your “choice” to avoid events, but a gut-wrenching complexity of cost-benefit analysis against sheer limited resources.
If they know what your limitations are and keep putting the barrier firmly between you and them despite your suggestions for fun things that would include everybody, then you need to arrange some things on your terms. Don’t be afraid to set out exactly what the parameters are for Shit You Are Willing To Do For The Sake Of Their Happiness.
That might mean excusing yourself from Planned Event, whilst agreeing to do something to celebrate the occasion seperately, and just send a gift / card/ flowers on The Day of Event. It might mean that you end up being the one to organise stuff you can all do, because otherwise you never get to do any in-person socialising with the family. Unless they finally have the epiphany, the situation will be one-sided and it will suck, but it at least shows your good will towards them, and makes it clear that you are not just avoiding them all the time.
I know you probably have days with more or less spoons than others, and not everyone likes to reduce Family Time to a basic monetary equation, but if you can get them to understand the Spoon Analogy, could you set a standardised level of spoon expenditure per Occasion? Even to the point where you can give invitations for X level of social activity the same way some people give gift cards?
When I bought my house that has no guest rooms, I actually thought of this as an asset, because I wouldn’t have my moany, depressed/depressing verbally insulting parent expect to visit for any length of time.
But now I wish I’d held out for a larger house, since s/he wants to visit anyway, and s/he’s a very negative element when s/he’s around, and without a guest bedroom s/he’s a black hole of negativity in our main living space the whole visit.
Of course, me being direct about how little I enjoy her/his company would resolve this problem too. But it doesn’t feel right to cause her/him that much pain.
So if I buy a new house, it will have a guest suite if at all possible, even though I don’t even like my parent much.
Oh dear, are you my sibling? We are turning our single guest bedroom into an office/exercise area, because then the room will be used more than 2 days a year. Parent (who occupies it those 2 days and complains about its inadequacy) will not be informed until it is a fait accompli. There is bitching when they stay there, so will there really be any more bitching when they decamp to a B&B/hotel/rented room? But it’s really hard to rewrite the scripts that I was given in childhood, particularly when all the words are “I want to visit” and all the actions are “I’m miserable on this vist”.
Hello LW#1. My own mum died very suddenly a few months ago, and it’s definitely led to some changes in my dad’s expectations around visits, some of which I’m finding very hard work (and feeling bad about finding hard work). I can imagine telling him you don’t want him to visit this Christmas would be very difficult and I’m not sure there’s a way of doing it that he wouldn’t feel bad about, sorry.
I also get the difficulties around choosing an affordable living space for you and how that space might not be an easy one for him to visit. My own home is the top two floors of a three-storey house, because that’s what I could afford while still getting the features and facilities I needed. As I read your letter, your dad is a relatively infrequent visitor and I can understand why you may not have been able to prioritise his needs while still finding a place that’s workable for you to live in.
Given that Christmas is less than a week away, I’m guessing you haven’t actually talked to him about this, and that he’s visiting as planned. So, my suggestions are very practical. Talk to him specifically about his needs during the visit, giving him options where you can and asking for his input. So, things like:
Which room would you find it most convenient to sleep in?
As the sofa-bed is uncomfortable, would you prefer to sleep on an airbed/my bed/other available option?
Is there anything that would make your sleep more comfortable?
Is there anything else we can do to make the house more accommodating for you? (e.g. temperature, location of furniture)
Would you prefer to stay in a bed and breakfast instead of in the house, given that it’s quite difficult for you to navigate?
Focus on things you can actually do, right now – it’s a lovely idea to fit a stair-lift, for example, but even if it were financially viable it’s not going to happen by the middle of next week. But, if there are small things you can do that would make a difference and enable both him and you to enjoy the visit more, then they might have a big impact. And, you can revisit the conversation if you find he’s raising further issues during his stay – if he complains that something is causing him a problem, it’s an opportunity to have a dialogue with him about what could be done to help make whatever it is more manageable. In some ways, the fact that your house is a fixer-upper offers an opportunity in itself, as you can make decisions that take his needs into account (and in so doing, you’ll likely make the house more usable for yourselves, as well – there are design philosophies that take exactly this into account). So, seek his opinions about whatever bit of fixer-upping is coming up next – what door handles you should get, which bath, what flooring, and so on. You can probably make the space much better for him just through seeking his input.
Have a great Christmas!
When we were apartment-shopping in the spring, I was really, really firm about wanting a place on the ground floor. We have a friend who uses a wheelchair; my mother’s gentleman friend has difficulty with stairs; my partner J has arthritic knees. We very carefully restricted our search. And then we found this completely gorgeous place that met every single one of our criteria and then some, EXCEPT that it only has one bathroom and it’s up one flight of stairs.
So we went for it. And we make other plans to see that friend, and we go visit my mother and her gentleman friend instead of having them over to see us (it’s mostly easier for us to travel anyway), and J complains a bit about his knees sometimes but mostly doesn’t care because for him all the rest of the apartment makes the stairs completely worth it.
I agree that there’s really no point to shaming LW1 for buying the house she did. She bought it, and that’s the situation that needs to be worked with now. Maybe working with it means being the one to travel. Maybe it means sitting down with dad–over phone or Skype, with both of them in places they find comfortable–for an honest talk about limits and boundaries and what’s doable and what’s not. Maybe it means seeing a therapist to deal with resentment-baggage. (I got a strong whiff of “how dare dad, who is miserable, still be alive when my wonderful mom, who was finally happy, is dead” off that email.) Maybe it means that when dad visits for the holidays, the whole household moves to the ground floor as much as possible: he sleeps there, everyone has meals there on folding trays or tables, everyone socializes there. Maybe it means dad spending the holidays with friends instead of family. There are a lot of options. Which is good, because clearly things aren’t working well as they are right now.
Re letter #2: I was also a little taken aback by the tone of “Those people don’t know how to have fun!”. Sure they do. They know how to have their kind of fun. It is clearly not LW2’s kind of fun, or Elodie’s kind, but that doesn’t mean it’s not fun for the people who actively choose to do it and spend a lot of money on it. And I think the LW2 would be best served by making it clear to the in-laws that there are multiple kinds of fun, and things that are fun for one person may not be fun for another. It doesn’t sound to me like LW2 would want to do the things that the in-laws do, even if ability were irrelevant. Sneering at the in-laws’ ways of having fun is cathartic, maybe, but it doesn’t really fix anything.
It also sounds to me like the in-laws are pretty well-off, and they may be used to the idea that money can fix everything. It’s going to take some effort and patience to get them used to the idea that there are times when you cannot buy health or ability. On the bright side, that means that they do have money to throw at accommodating disabilities, if they choose to.
Some things that LW2 and husband can say:
“Thanks so much for inviting us, but that’s not an activity we enjoy/are able to participate in, so we won’t be going.” Full stop. If you get pushback, just repeat it. “I’m sure it will be lovely, but we can’t. I appreciate that you want us there–we want to be there–but we can’t. I’m honored by your faith in my ability to do whatever I set my mind to, but my body has limits, so we can’t. I’m sad too, but we can’t. I’ll miss you too, but we can’t.”
“The next time there’s going to be a big family event, can I help with the planning/organizing?” Only an option if spoon supplies permit, but this can be a great way of avoiding that uncomfortable situation where plans are made solely by very able people for other very able people, and by the time less able people have a chance to speak up it’s too late to make changes. If there’s a sympathetic person in the family who you trust to speak up for you or to consult with you and then bring your ideas back to the very able organizers, ask them to volunteer on your behalf.
“For a change of pace, how about we do something quiet and low-key for Christmas next year? Maybe gather at ______’s house and sing carols around the piano? That would be so charming!” Early suggestions can help plant ideas in the heads of the planners and also make it clear that you’re happy to do things when those things are things you can do.
“It really is too bad that attending the destination wedding simply isn’t an option for us. Will you set up Skype at the wedding and reception so we can watch from home and raise a toast from afar? We’d like to participate as fully as we can!” Requesting specific accommodations sometimes gets better results than asking more generally, and also makes it clear that you want to be there and are sad that you can’t. (I’m harping on this because very able people often think that disability means “don’ wanna”.)
“How do I tell him I don’t want him here all the time, that it’s not quiet and restful for me when he’s here, without hurting him? I already feel super guilty for thinking of him as a burden.”
I don’t see this being addressed at all? The LW is asking for permission to uninvite her dad (or cut the visit short?) and a script to do it, and she’s been given no script and had uninviting him framed as not loving him, which I really don’t think is fair — I’ve been in situations where I was overworked and burned out and short and cash and not exactly excited about being expected to put in the necessary money / time / energy to spend my holidays with my family; I resented that and wished that I could instead spend the time on things that would help me feel less miserable and exhausted, but that doesn’t mean that I don’t love them.
(Also, I second others in noting that the bit about the problem maybe being the job comes across as really classist: sometimes an exhausting job is the best one you can get. I’ve had a job that, combined with the obligation to devote most of my weekends to family, had me borderline suicidal, and I was grateful for it because unemployment would not have been an improvement.)
Yeah, I felt like the answer to the first letter did not actually address the question the LW asked. At all. It seems to have used the letter as a jumping off point for a post about the treatment of people with disabilities, rather than actually responding to what the LW was concerned about. Which seems unfair, really. The points about disability are valuable, but I’m not sure this was the right way to go about making them.
One time-honored script is “husband and I want to start our own tradition of celebrating Christmas as just the two of us.” I would not mention the cat, because that could come across as putting your dad below the cat in some kind of ranked system. And I wouldn’t expect it not to hurt him. But I hear people with grown kids explain why they’re not with those grown kids at the holidays as “they want to start their own traditions.” I think it does let an older parent save face because it provides some kind of explanation other than “they don’t want me there.”
If you’re mostly concerned about your dad taking up the entire two weeks, but you still want to be with him some portion of the time, come up with a plan and offer it to him. For example, suggest Chinese food and a movie on Christmas Day (at a restaurant and theater you’ve scoped out and are sure will be accessible). If you’re inviting him to a thing everyone can do and everyone will enjoy, you’re doing a great job.
Yeah, I noticed that too. The site “A Practical Wedding” has a some good posts about choosing to spend the holidays without family (like this one:http://apracticalwedding.com/2013/11/not-visiting-family-for-holidays/). I see nothing abelist about the letter writing saying “hey dad, I think we would both be more comfortable if we spend to holidays doing our own thing, let’s try and make plans for a less busy time of the year” and then sticking to it.
(and while I am commenting I will also say that I find absolutely nothing wrong with the in-laws in the second letter planning the wedding they are, it’s there day and their choices. The problem as I see it is that they are not giving the LW and spouse the option to gracefully bow out with well-wishes)
“I find absolutely nothing wrong with the in-laws in the second letter planning the wedding they are, it’s there day and their choices. The problem as I see it is that they are not giving the LW and spouse the option to gracefully bow out with well-wishes.”
I agree. “We demand that you be here AND we refuse to accommodate you AND we will make you feel like you’re horrible no matter what, MWAHAHAHAHA!!!” is a shit deal to hand somebody.
Agreed 10,000%. It would be one thing if LW#1’s dad were like LW#2, looking for a good-faith way to enjoy time with family that doesn’t deplete his spoons and/or present an immediate impossibility. But the LW’s description sounds more like a male version of Olive Kitteridge in Elizabeth Strout’s novel, who draws repeated attention to the (very real) discomfort and awkwardness of her visit as a pretext for her real complaint that her son won’t cooperate as an extension of her personality. The tell is the dad’s refusal to negotiate for a better arrangement, even when invited to do so. If he won’t consider any other holiday arrangement than coming to her home, won’t tell her what he needs till she’s failed to provide it, and ignores warnings that her ability to provide his necessary comfort is limited, then just how much is this situation a referendum on the LW’s love for him?
I say this as someone who was blindingly angry at friends and loved ones who took my depression as the perfect opportunity to administer what I’m sure they thought of as tough love but also (obviously, to my eyes) had a large element of disgust for the moral contagion of mental illness. They also, however, came up with practical accommodations that I was able to make use of for my own wellness. Being in a much better place now, I can forgive the lack of compassion, and also (note to self) refrain from making unreasonable demands that my POV override everyone else’s when I’m in pain.
I agree that it would be to the LW’s benefit to make an intentional plan for practical accommodations for their dad, to put it into effect, to solicit feedback about how well the plan works, and to implement the feedback as possible, with as much good faith as they can bring forth. I don’t agree that the LW should attempt to adopt the dad’s POV as if it is the true key to the situation. ESPECIALLY if the need for reasonable accommodations is the dad’s pretext for emotional blackmail. Script: “Dad, here is my plan for the holidays. [outline of practical arrangements + request for financial assistance or other compromise] You can help me tweak this plan by [giving details about X needs/money situation/scheduling].” If Dad says: “But I wanted more time with you than that/I don’t want to have to give you a laundry list of things to do for me/[silence + judgment]” then the script is: “I’d love to have your feedback so we can make this plan work for you as well as possible” and then leave the ball in his court. If/when confronted with low-level bitching, reiterate the options outlined in the plan and solicit suggestions for tweaks. Repeat till he either articulates needs in ways you can address, or until it’s clear he would rather be miserable than let you maintain an independent POV.
In the throes of depression it helped me to pretend that *nothing rides on* my choice to take this or that action, even if that action was clearly necessary. A similar mental exercise might help the LW do things that will be acts of love for their father. Say that *nothing rides on* the actions LW takes for their dad’s benefit — being not-ableist doesn’t ride on them, being a loving daughter doesn’t ride on them, sparing his feelings doesn’t ride on them, avoiding conflict doesn’t ride on them. Establishing an independent adulthood doesn’t ride on these choices either, but clearly the LW is looking for the right mosaic of actions that will comprise that. I suspect the LW won’t get out of this without hurting Dad’s feelings or generating conflict, so any reduction of pressure helps.
I LOVE that script. It really does sound like the problem in the letter isn’t that Dad needs accommodation, but Dad expects everything to fall into place for him without asking for what he needs in advance or suggesting a compromise like staying elsewhere/having the LW fly out to visit instead.
And it does sound like Dad was inviting himself over during a time that the LW really does not want company. LW is under no obligation to be a host, even during the holidays, even for a parent.
This doesn’t have anything to do with either of the letters, but I just wanted to comment that actually almonds aren’t true nuts, so people who are allergic to nuts aren’t necessarily allergic to almonds 🙂
Most nuts are not nuts in the botanical sense, including cashews and walnuts (and peanuts, which are legumes). People who are allergic to “nuts” probably *are* allergic to almonds.
I recently moved to an apartment that’s all stairs, all the time. For me and my boyfriend, it works fine. For our friends group, it currently works fine. So stairs weren’t a consideration in choosing this apartment.
However, my mom does have MS, and would not at all be able to stay at my place. My solution for any future visits will be to put her up in a hotel that has elevators (and probably somewhere a bit closer to my work than my house, since that area is actually really nice with tons of cafes to sit at, and is mostly flat with well-maintained sidewalks, as opposed to the hills and cracked sidewalks near me). It will be a much better time for everyone involved.
I know that sometimes there’s this idea that that “oh, you have to put people up at *your* place, or you don’t love them!”, but honestly, I live across the country from my mother, she’s visiting at most a couple times a year, and so finding a place that would accommodate her wouldn’t make sense for me, given my wants and needs, and what’s available in the area. So instead, I’ll pay for her stay at a hotel that will honestly be a lot more comfortable for her than staying in my place would be even if I did live on the ground floor, and ensure that our plans involve less walking and avoid hills and stairs. I also try to visit her at her home twice a year, so I’m the one dealing with travel as often as she is, and she can stay in her accessible house for the visit.
And I’ll admit, having my mom stay elsewhere than my apartment would do wonders for making me not stress way the hell out. I love my mom, but we’re very different people with very different social styles, and after about two days of any visit, I start getting really stressed from dealing with interacting in a mode that’s not very natural to me. Having her at a hotel rather than with me 24/7 really helps with extending that timeframe.
For LW1, it might be worth seeing if you can come to a similar arrangement with your father? I know hotels can be expensive, but that might be worth it. And it would also help with the quiet and restfulness, since after you’ve spent time together, you’ll be able to go your separate ways for the night and relax.
LW1’s dad just sounds lonely and sick. A lot of men that age rely on their wives to build their social support network – without the wife, there’s no more social support. Plus, there’s the MS to make it even harder to socialize and build new friendships.
One thing that LW1 may want to do with her dad is just sit him down and have a bit of a talk about her stressful job and how she may not have the energy to do a lot of socializing or entertaining. Maybe the dad can be a lower-key guest and do more to accommodate LW1’s tiredness, and then the visits will go better.
I used to work a really exhausting job and the houseguest I really remember with a lot of fondness is my best friend, who came to stay for a week or so. She cooked and cleaned for me, entertained herself while I was at work, and basically made my life easier during the time she was there. LW’s dad may not be up to much in the way of housework, but at the very least, he can entertain himself and not rely on LW so much.
But in any case, I’d approach this with a lot of compassion for the dad – but then again, I know that if this were my dad, I’d basically turn myself inside out trying to relieve his pain and loneliness and to make him feel better. LW’s dad may not merit that kind of treatment.
For LW#649, I feel like something got overlooked that’s jumping out at me because I have a parent going through it, though for very different (not relevant to this discussion) reasons – is part of the problem that your dad is living somewhere that doesn’t, to him, feel like “home”? You mentioned your parents made a big move for your mom’s dream job not very long before she passed, and I can’t help but wonder if something contributing to dad’s misery and general demeanor is that he’s living in a place where he’s socially isolated. And maybe that’s why he’s making such a big deal out of the yearly pilgrimage to your lumpy sofa? And maybe if he lived somewhere else, or made some more contacts where he presently lives, he’d be less miserable? It’s not something you need to “fix” for him, but it could be something that helps inform your interactions with him. It’s HARD to be a parent’s only social outlet, especially when you don’t live nearby, because they’re busy trying to cram *all the social* into every interaction, and sometimes you kind of just want to sit quietly and read a book, you know? But it may help you interact with him from a place of greater empathy to keep it in mind. (This is, of course, assuming your dad is someone you want to have a relationship with at all – you don’t have to want that, as Elodie and others have covered eloquently above.)
This is something I didn’t even think about! Being a parent’s only social outlet is exhausting at any time of the year, and it’s especially difficult during the holidays when there’s so much pressure to prove your devotion to your family by buying gifts/traveling/hosting.
This was one of my first thoughts. The letter made it clear the long-distance move was primarily the mother’s choice, which the father went along with. Is there anything now keeping him in this new location? It might seem counter-intuitive to answer ‘Having him around for two weeks exhausts me’ with ‘So have him around for 52!’, but if he had his own accessible home and/or retirement community within driving distance of you, you could have more frequent, but lower-pressure, interactions. The issue of where he sleeps, or who foots the travel expenses, would be moot. (And as other commenters have noted, if his MS progresses to the point where traveling would be impossible, providing whatever level of support you can offer would obviously be easier if he were close by.) Of course, all this comes with the standard ‘Notwithstanding any emotional history that would lead you to want *more* distance between you two’ disclaimer that most here have provided.
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#649 – The point that was, I feel, missed in the answer by Elodie was that the LW spells out the living situation, and then her dad says it will be fine. LW takes him at his word, and then he complains about the very things the LW warned him about. Also the LW has tried to accommodate him, including inviting him to her in-laws which probably was a bit complicated to arrange.
I think her father is perhaps ashamed/embarrassed (because society is disabilist) about the changes he will need to be made and doesn’t want to cause a fuss by asking for things but sort of expects the LW to guess and do them anyway. Whereas LW is still in the parent/child mindset where he tells her what to do, and she obeys. As you get older, we all have to start thinking of our parents not as authority figures (or boring uncool people who are being sooo unfair) but as people with the same dysfunctional thought processes and feelings of shame and pride as the rest of us.
The issue is not that the father is demanding specific changes and the LW feels wary about implementing them – the father is simply expecting the LW to read his mind.
Most people would feel extremely uncomfortable telling a disabled person that they can’t handle something if they said they could. And for 99.9% of disabled people it would be an abdominal thing to do. However, for the LW’s father I think you need to be a bit more sceptical about when he says he’s fine with something.
Maybe you could make a list of his complaints from last year, and then try and think of a possible solution for each one – as something said upthread, switching your bedroom with the living room if that is one the same floor as the bathroom, borrowing an air mattress etc. Send this in an email, and if you can’t answer some of the complaints then ask him for his opinion. Then add “if you don’t fancy staying over night at mine the whole time, then there is a deal on this hotel – it’s a ten minute walk away and it is fully accessible, we could split the cost”. Try and use a practical, cheerful tone. This isn’t any extra bother, this is on a par with working out how to coordinate picking him up from the airport or whatever.
If dad doesn’t respond well to this then next year you will feel more confident in yourself saying that you want just a you and your husband Christmas. And hopefully you will have set a tone where you can both dispassionately discuss his needs in a way which makes him feel in control while you don’t feel like you have to work out what he needs.
#650 – I think you should take comfort in this quite contentious thread *everyone* thinks your in-laws are in the wrong. And if anyone outside the family finds out about this dynamic they will side with you.
Planning some holiday/event/wedding type things which are not accessible to everyone in the family – fine, great, have fun.
Having all the activities/the main thrust of the activities being only for young, healthy, non-disabled people – a bit of a dick move.
Being pissy when older, unwell, disabled people don’t come – ridiculous and offensive.
I think you should give up on explaining yourselves to these people. I don’t think there is a magic combination of words where they will get it. And I think accepting that will be freeing.
If you decide not to go send to the wedding them a nice card with an apology for not being able to come. If possible, within time and energy budgets, make a nice gesture: generous wedding present, offer for the couple to come over for a takeaway before the wedding, some crafty gift thing. You will have put in your side of the bargain. If they act like dicks then you can shut them down: we wanted to come, we were unable. We are the experts on our own health. Okay, I’m going to put the phone down/go and have some chocolate fountain/change the subject to mulch sourcing now.
*abominable, not abdominal
I have a very different take from Elodie on letter number 649:
You do have an obligation, as Elodie said, to make reasonable accommodation for those you wish to persuade to come to your home. You are under no obligation whatsoever to accommodate those who invite themselves.
This is a good distinction.
How do I tell him I don’t want him here all the time, that it’s not quiet and restful for me when he’s here, without hurting him?
There might not be a way to do this without hurting his feelings since he seems to be expecting to visit but the smoothest possible conversation will probably be all about your desire to just be with your spouse and do precisely nothing but rest and don’t want any company for Christmas this year. I don’t think you want to have a conversation about why you don’t want him there when there isn’t anything anyone can do to make the situation better.
Later you can have a discussion about how to make visits work better but for now just focus on the fact that you don’t want visitors.
Have you any scripts for letting the family know in advance that if they book something we can’t do, we won’t do it?
If he’s already had a conversation with his family about his and your disability then that conversation has already happened. If you think the issue is that they don’t understand then the demonstration from Spoon Theory might help: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
However, it sounds like you think they know but don’t get it or maybe even they do get it but feel it’s up to y’all to deal with and you should suffer for the sake of faaaamily rather than them change/alter any plans for you.
If I were you I would only have one more conversation (at most) about what I can and can’t do and that can’t do = won’t do.
A much better use of your time is to reach out to family whose company you enjoy for very low key, low energy get togethers*, whatever that looks like for you. This may help with the whole “she’s keeping you away” BS. They can’t make that accusation if he/y’all are seeing some of the family sometimes. Also, he should know he’s 100% in the right to just end the conversation the second it goes there. 1) It’s insulting toward you and 2) they’re essentially calling him a liar, which is also not cool.
*I live far enough from my family that I can’t visit as often as I’d like but my mom and I will watch a show together on Hulu or Amazon Prime. There are even sites that will help you sync up the video so you don’t have to do manual adjustments to make sure the timing is right (though I haven’t actually tried it yet myself). Hey #649, maybe this will help you out too? You could still watch a movie with your dad at some point over the break.
LW #649’s dad knows that he can expect more physical discomfort than he can deal with, and yet he visits repeatedly. It really sounds to me like the thought of just not spending the holidays together isn’t ever even occurring to him – like it’s one of those situations of “this is simply what we as a family do”. This seems like a difficult conversation that needs to be had.
The LW definitely is thinking about that conversation, and she’s explicitly asked for advice about handling it, a question that Elodie and most of the commentariat seem to have missed. I’m not able to give a useful answer to that one, but maybe pointing it out for someone smarter to notice will do.
LW #649, if there’s anything marginally useful I can tell you, it’s this: I don’t see from your letter whether you’ve put much thought into figuring out some cheap and efficient ways to make your dad more comfortable. Maybe you’ve actually looked for them and didn’t find them, or maybe you’ve consciously decided that it’s too late for that kind of a solution; all I’m saying is that’s not visible from your letter, so I’m bringing it up in case that’s something you still want to do.
LW649: I’m sorry if this is redundant, since I haven’t read the whole thread yet, but I’ve been turning over a response to your question in my mind all day. You wrote, “How do I tell him I don’t want him here all the time, that it’s not quiet and restful for me when he’s here, without hurting him? I already feel super guilty for thinking of him as a burden.”
The problem is, you probably can’t tell him that without hurting him. That doesn’t mean you shouldn’t tell him that. It doesn’t mean you’re in the wrong to tell him that. It just means that you’re stuck delivering the message that the world isn’t quite the way he wants it to be, and it’s pretty typical human nature to experience some hurt over that.
But if you accept that it’s not a reasonable goal that he not be hurt by the communication that really does need to take place between you, and make it a goal of saying what you need to say respectfully, then you have some options.
“Dad, I do physical labor all year and it is wearing me down. I need a rest from physical labor or I’m not going to be able to keep on as I have been . That means I can’t host you at the holidays this year. I’m so tired I can’t even offer good suggestions for other ways we can see each other, so let’s pick up that discussion again after I’m back at work after my rest. In the meantime, I’d love to call you on Christmas if that works for you.”
You may have noticed from the thread that we’re all reading into your letter what we know from situations we have faced in our own lives, and as a result, the responses are all over the map. You’ll have to pick the ones that deal with the real situation that you’re facing, the one with the details there wasn’t room for in your letter.
My personal experience, that I am reading into your letter, made me pick up on the part about him being anything but restful and quiet, and yet assuming that you being restful and quiet would be all about caring for him. It’s entirely possible it hasn’t fully dawned on him that his staying in your home with what you currently have to offer is exhausting for you. In that case, spelling it out will make a big difference.
It’s also entirely possible that he will decide you don’t get to make the determination of what is a moderate thing to ask of you versus what is a big thing to ask of you — this is VERY, VERY common in our society when it comes to parents and their adult children. That may manifest as him insisting he’s not asking much. It doesn’t matter whether he thinks he’s asking much — what matters if if it’s more than you have to give, which right now it is. You could tell him that, if it comes to it. But he probably won’t like it.
As part of my ponderings of LW649’s letter today, I recalled that Aunt B over at Tiny Cat Pants has had a couple of beautifully plangent posts lately:
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