Dear Captain Awkward:
My dad’s health is declining- in the past three years he’s had a quadruple bypass, and is now on dialysis. My mom, who doesn’t have a big support network and who isn’t talkative about her feelings at the best of times, is running herself ragged keeping up with his doctors appointments, sorting out contradicting information regarding his medicines, researching what the doctors are telling him, and generally taking care of my dad and the house that they live in. I would like to give my mom as much support during this time as I can (I live 8 hours away, unfortunately, so giving physical support will be few and far between).
However, I find it really emotionally draining to talk to my mom these days because it’s a continuous conversation about what’s wrong with Dad, how the doctors are doing everything wrong, how Dad is in horrible health, and underlying all of it is the fact that I know my mom doesn’t really have anyone to help her mentally or physically throughout all of this. I’d like to be there for her as much as possible, but how can I do that when I find it takes me a day to get back to normal (as in, not bursting into tears every five minutes because I’m so worried about her and my dad) after I talk to her on the phone?
Alphakitty here.
First of all, let me say I’m so sorry you and your family are going through this. It happens to most of us sooner or later that someone in the circle of people we love develops severe health problems, and we watch someone else we love shoulder the crushing burden of being their primary caregiver. It hurts so much, and distance makes you feel helpless. If you’re like most of us, you honestly can’t up and move to take on some of the on-site caregiving, but you feel as guilty as if you had that option and were choosing not to use it.
And in your case, even if you manage to forgive yourself for not being able to be there more, you have a collision between what your mom is (implicitly) demanding of you even from afar and what you need to get through this yourself.
(Before I move on to the specifics of your situation, let me say that my mom is like your mom. She is horrible about asking for help; she’s much more comfortable with the role of help-er than help-ee. She doesn’t have much of a local support network, either. And together, we’ve been through my Dad’s sudden death about 14 years ago, and her best-friend-for-70-years’s death of cancer a couple of months ago. So yeah – I feel your vicarious pain.)
Anyway, the first thing I suggest is to figure out if there is any way you can lighten her load even from afar. If one of her burdens is researching drug compatibilities, can you take that on? Maybe ask her to e-mail you a list of his medications and let you know anytime one is added or changed, and you will talk to a pharmacist and/or do some research (like so many things, I think there are apps for this!) if there are issues. If she doesn’t have one and you/she can afford it, maybe get her a smartphone or small tablet with a calendar app that will make it easier for her to keep track of appointments? Maybe (again depending on the finances) see if you can pay for someone to come in and clean every couple of weeks, or do a once a month deep clean? Doing any of these things has both actual value and symbolic value (making her feel less alone).
Also, is there anything you can do to increase her local support network, like a friend or neighbor you could talk to about checking in on her periodically – in a deliberate way, rather than a casual catch-as-catch-can way? If your mom is now or ever has been active in a church*, and you think she’d be ok with it, can you talk to someone about them doing some outreach, giving her the support of their community? I’m not a church person myself, but one of the things churches are usually good at is being there for members of the congregation in times of trouble – and they generally don’t even care if you only became a member of the congregation because of that trouble. Even if she’s already going to services, if she’s doing the stiff upper lip thing, people might not know what she and your dad are going through. Call her local hospital or senior center and find out if there are support groups for caregivers. Or, if there’s a hope in hell she’d do it (mine wouldn’t), suggest that she get a therapist to talk to about what’s going on – both for her, and so she feels less desperate to unload by the time she gets to you.
Remember, too, the community where geography doesn’t matter: the Internet. Guide her to an online support group or blog for folks in her shoes (her own Captain Awkward!), or help her start her own. Her situation is so common, in the unlikely event it doesn’t exist there is surely demand for it.
When you do go visit, help her with household stuff without being asked. Leave some meals in the freezer. Do some of the tasks that used to be your Dad’s job but he can’t do anymore – if she’s like my mom, those tasks will particularly weigh on her.
And now (at last!) for you. First, you need to make sure she knows how distressed you are by what they’re going through. Sometimes, because you hold it together on the phone, the person who’s in the trenches imagines you going blithely along emotionally unscathed – like as soon as you hang up the phone they and their troubles wink out of your mind. My mom used to say “well, I should let you get back to [some relatively pleasant thing she imagined I’d be doing when I hung up].” And I’d be like, “Really? You figure I can just go la la la la la back to that after this phone call??” Without laying a guilt trip on her for making you sad, make sure she knows it bums you out to hear what they’re going through and it takes you a while to recover. Tell her, “I know you’re scared. I’m scared, too.”
Explain that for you to keep functioning in your day-to-day world (succeed as a student, keep/prosper in your job, be a decent spouse/parent, not suffer a mental health crisis…. whatever applies), you can’t have the full-scale everything-horrible-that’s-happening type phone calls all the time. That you absolutely do want to know how she and your dad are doing, but that you need her to tell you most of that stuff by e-mail, so you can read it at a time when you’re in a position to process it, and so that on your once a week (or whatever) phone call you can have room to talk about less emotionally charged (and exhausting) things.
Unfortunately, that’s all I’ve got. This is one of those times when what you need and what someone else needs directly conflict – and since the other person is your mother (with whom I gather you have a decent relationship) one of the things you need is to not feel like you’re letting her down. When that happens, all you can really do is (1) try to reduce the conflict (by addressing their needs or yours in ways that don’t conflict), (2) figure out what you can offer without doing violence to your own mental health, and (3) be as articulate as possible about what you can offer and what you need. The good thing is that because this is a mom with whom you have a decent relationship, you should assume that she does not want you to do violence to your mental health for her sake… so treat it like a partnership to get you both through this as whole and hale as possible.
And, of course, good luck with that.
* church/synagogue/mosque…
CaptainAwkward.com 
I’m so sorry you’re going through this – it sounds horrendous. I know you wrote in to ask about supporting your mother, but are you making sure you’re getting the support and care you need right now too? Again, internet forums are all over the place for these exact situations, and a Team You that can apply large doses of nice movies, popcorn and crying-on-shoulders also sounds like an essential.
As a thing for your mum – can you order her groceries for her online? She may actually enjoy the chance to get out of the house and away from her care-giving duties (however cheerfully and willingly taken up) and so would prefer to do this herself, but alternatively knowing that there’s always going to be food in the cupboards could well be another huge weight off her mind. Plus you could slip in extra treats for her, like her favourite ready-made meal, or nice chocolates or something.
Best of luck, and I hope your dad feels better soon and you and your mum find a way to help one another through this in a more positive way.
I second the importance of making sure are taken care of right now. Even though the distance means you aren’t as involved in the day-to-day caregiving, you’re dad is sick, and that weighs on you. Make sure to take extra-good care of yourself, particularly on days when you’ve had one of “those” conversations with your mom.
Agreeing you need to make sure you are taken care of, and seconding the online shopping thing. When my nan was sick, my mum found a support group for patient’s families very helpful. Maybe look into this?
I’m sorry this is happening *huge jedi hugs*
OP here:
Thank you SO much for addressing this, CA. I hadn’t thought of the online support groups, nor of doing things like ordering groceries online or getting her a housekeeper. I’ll look into that right away!
Another thing that’s hard for me, that I didn’t include in the OP, is that my mom has an inherent distrust of doctors and generally believes that every doctor that sees my dad is screwing up in some way. I agree that his treatment has been fragmented at best (his GP, his kidney doctor, and his heart doctor are in different counties and different medical systems), but my mom flat out refused to believe that his kidneys were failing and that he needed dialysis. Now that dad has decided to go that route she is going along with it heartily, but it is really hard to see her in so much denial about the whole thing.
I am actually feeling pretty OK about the whole situation- I do wish that my father wasn’t going through this, and of course I wish that he would live to 100 and have no health problems along the way, but I understand that people fall ill and sometimes they don’t get better. I have a fantastic support network, and I wish I could conjure one out of the air for my mom.
Thanks guys 🙂
Just a thought: is denial necessarily such a bad thing? It can be a coping mechanism. Like, she really knows how sick your Dad is but she’s not ok with that (duh!), so she’s doing a little pretending. As long as her denial is no longer adversely affecting his care or making things harder for him (like making it necessary for your dad to advocate versus his wife to get the care he needs — that’s not good), what’s the rush for her to come to terms with how bad his health is? It won’t make things easier for her now, or even in the long run, really.
You should definitely see if there’s a way to get her to let her congregation know what’s going on if she’s a member of a church. Churches really are usually pretty good at providing support for their members. I know different congregations that have literally let people live with them when that’s what was needed, for extended periods of time. Not that I’m suggesting that’s what would, or should, happen with your mom – but as the saying goes ‘The proof is in the pudding’ and it’s a resource that you should definitely see if she’d be willing to pull on.
Even if she isn’t a member of a church, or isn’t willing to ask for help from them, you should still check around the local churches for support groups. A lot of churches let groups use their building as a meeting place, so it’s possible you might find something that way.
I add my sympathies and unfortunately personally understand what it’s like to have a sick parent living thousands of miles away and dealing primarily with my mom (the caretaker parent). My mom is the reverse in that she’s very hyperinvolved with medical choices, which means that I used to hear in graphic detail every new test/diagnosis she was exploring for my father.
One way that I found a way to deal with the phone calls (my mom could never been encouraged to email) was to ask her to call me another time during the week to just talk about other things. What was happening with her at work, thoughts on a movie she’d seen or a tv show we both (or just her) watch – anything else so that we could have a separate relationship beyond my father. By talking to one another more, she felt less pressured to tell me every minute thing about my father – and while I will never watch The Bachelorette, for her to have someone to share her thoughts about the show really made her happy.
He’s on dialysis, so they are at the hospital a lot. There are almost certainly support groups there, or counselors, for her to join. That might be the easiest way for her to find local support.
Your letter is about you and your mom, but also it is about your dad. Is he getting mental health care? Is he getting stimulation during long boring painful difficult times that now seem like forever? He is probably grumpy as fuck, if not depressed, and scared, and your mom might be trying to carry all that burden for him as well.
Aside from alphakitty’s excellent suggestions and trying to address some of your dad’s emotional and mental needs, something you can do is write handwritten letters. You can decorate the envelopes or include pictures, whatever your thing is. But a tangible piece of paper you took the time to write out, that you touched with your hands, is different from email or phone calls. It might be a way for you to create contact that is positive and loving.
Good point! Is there anything your dad enjoys – any distractions or hobbies or treats he can still handle – that you can contribute to? When my dad had to spend months on his own while my mum came back to the UK for work, in addition to regularly calling and speaking to him, I started sending him little care packages – a book on a subject he likes, a couple of edible treats (may depend on current diet and appetite for your dad), a letter from me containing some recent photos of the family over here and some rare or unusual chilli seeds to help his growing experiments.
The care packages were something to look forward to, a reminder that he was loved and cared for even though he was isolated, and provided some distractions from everything going on.
Actually, could you manage a small care package for each of them once a month? The contents don’t need to be expensive if money is tight. If there’s any younglings in the family near you, maybe get them to write a letter and include a piece of art by them?
I’d like to second this too. When my dad was ill, there were several times when my siblings and I took him to do fun things so our mom could go out to lunch with friends or just have a nap or whatever. It seemed to take pressure off of her – and then also of him – that Dad was “in someone else’s care” for that period of time. And we enjoyed getting to have those times with him, too.
Sending empathy to you and your family, LW.
YMMV, of course, but if you do decide to ask your mom to send some of the updates via e-mail, I’d suggest some thought first into which account she should use. In a different context, I found that it mattered for me which account the potentially stressful e-mails were appearing in. I didn’t mind learning to dread checking my personal e-mail account, since I only looked there once or twice a day anyway, but a dread of checking my work e-mail account became a real problem.
One way that you can help your mom best is to try to be as present for her as you can during your conversations, really listening and showing you understand and value her perspective, and a useful strategy for managing that is to have the habit of immediately putting your own attention somewhere else as soon as you’re off the phone, whether that’s into work or immersed in a fictional world of your choice (via reading, video games, etc.), so that you can process the impact of what she’s just said “offline” (without your conscious attention to it) and then return to thinking consciously about it later when it’s already been digested a bit and when you can create a comfortable space for yourself for doing so (either alone or among Team You). It’s a lot of stressful work, having something like this be part of your lifestyle, but you’ll look back later and be glad you handled it with grace.
(Nicely done, alphakitty, on your debut post.)
LW, so sorry to hear about your family situation. My mum’s been in a similar position to you a few times and the guilt and stress of being geographically distant on top of the sadness of a loved one being so ill is a really heavy burden to bear.
I just wanted to second alphakitty’s excellent advice about asking people who live nearby to look in on your mum and dad. It can feel really hard to ask as you may feel like you are imposing, but everyone my mum has asked to look in on my grandma (who is in a nursing home on the other side of the world from us) has been more than happy to help, especially a few of mum’s old school friends. Most people like helping others, and besides, it makes them feel more able to ask my mum for favours when they need it. Karma is great!
Low stress things that I do to help my mum when she’s freaked out with the situation include reassuring her that I’m ok so she doesn’t have to worry about me on top of everything else, and dropping her the occasional pre-emptive email or text to let her know I’m thinking about her. That sort of emotional support can sometimes help catch her before she spirals into catastrophe mode and doesn’t give it the chance to turn into an upsetting phone conversation for me.
LW, I’m so sorry this is happening to you and your family. Jedi-hugs if you want them.
In terms of the emotionally draining phone-calls: This might be a good time to activate Team You. I used to get pretty regular emotionally-draining phone calls from one of my parental units and I found that keeping my emotions unprocessed and bottled up was at least as exhausting as the emotions themselves.
So I developed a strategy: the second my parental unit hung up, I would message a member of Team Me, and they would come over. I would rant and vent and be super-emotional and icky and cry a lot. And my friend would be supportive, and listen, and let me rant/vent/cry, after which I usually felt much, much better. Having someone say “What you’re going through is legitimate and it sucks” to me was extremely helpful. Also, If you can talk about your family situation to someone who isn’t directly involved, you don’t have to feel responsible for managing their emotions – it’s just about you.
So yes: if you have a friend/spousal unit/colleague/internet buddy who you can ask to be your emotionally-draining-phone-call support, go for it! (I mean, obviously, only if this is something you think will help you)
In addition to all the wonderful advice given above, I’d suggest that if there is even a minimal support network or congregation of some sort, that you could set up a website for support for your mom. The one I know is: http://www.mylifeline.org/, which is geared towards cancer patients, but they’d probably let you use the site. It includes a blog for writing updates to family and friends, and it has a calendar where people can sign up for meals, helping with doctors appointments, running errands, ect. Even getting one meal a week in for your mom would probably reduce her burden a ton.
The only other things I would suggest to get some help is to see if you can talk to the local senior resource center. There is also a website: http://www.seniornetworkservices.org/ . I don’t know if LW’s parents are officially considered “seniors” but even so, most of those services can apply to older parents with health problems. My other suggestion is that LW call give a call to 211 or visit 211.org if LW is in the US. This is a national toll free phone line in the US where you will always talk to a live operator who can directly connect you with a live person who can help you with various social and human services (including health services, therapy services and low income services).
I also agree- it’s hard to go through health issues with close family members- sometimes it is easier to feel like you have to bury your head in the sand or simply feel crushed by the weight of the severity of the situation.
But I also think that perhaps you could try and get your mom out and doing positive things with you when you visit- like a lunch date (with someone else keeping an eye on dad if he needs it) or a little shopping excursion or taking her to her favorite place to get her nails and hair done (if she’s into that). Even tiny little breaks like this can help a caregiver regain some strength to get back into the trenches.
One of the reasons why a caregiver tends to “dump” on others is largely because they have no other outlet for their stress. But if she gets out regularly at some point (such as going to the gym or the movies, etc), she can “get out of her head” a little easier, and that will decrease the amount of emotional dumping she’s going to throw at people when she breaks her isolation. I think a support group would work wonders for her as well, but that’s up to her to decide if it’s right for her.
Another thing you can do for your own mental health is try establishing some time limits on the phone. I know you want to support your mom through all of this but sometimes you just don’t really have the energy for it – if that’s the case, right after you say hello establish a time limit like “I can only talk for half an hour because I have to be somewhere.” That somewhere can be in your bed crying, if you need to.
This isn’t an “every time she calls” thing, since your letter doesn’t seem to be about trouble establishing phone boundaries, but it’s a way to compromise giving her the phone/vocal support she needs with protecting yourself from all the sad stuff that can get overwhelming. Sometimes when people get into a rant they don’t realize just how long they’re talking about the same stuff on the phone, and how draining it can be, so establishing phone time boundaries can be helpful – just jump in and say “mom I’m so sorry but the half hour is up, I have to go.”
Again this is just in the interest of protecting yourself a bit on days when you’re just low on energy, I’m not saying you should just hang up on your mom! Just be aware that you can end phone conversations when they’re getting too heavy for you. I’ve had the problem before when I didn’t even want to pick up the phone when my mom was calling because I didn’t want to be stuck on it for an hour with her and I just didn’t have the energy for it, but being able to say “hey I have to leave in ten minutes, but I can chat until then” worked well for me, and then I wasn’t just avoiding her calls altogether. YMMV and all that.
We are perfectly aware that everyone eventually dies. But the terrible truth of this is that very few will die peacefully in their own bed, unless they plan to make it so.
When an elderly parent is so severely ill that there is little hope of them continuing for another six months of life, the support of a religious community can be wonderfully helpful. (Alphkitty covered this.)
Another source of help is Hospice Care, which is usually covered by Medicare and HMOs. Hospice Care is a program whose purpose is not to save life regardless of pain or discomfort, but to prevent pain and distress from making ones last days miserable, and to provide as much comfort and peace of mind as possible. Hospice Care usually allows one to stay in the comfort of one’s home rather than in a hospital, and often provides regular in-home care of bathing and personal needs, as well as on-call emergency nursing care. If caring for the needs of such a family member is beyond the ability of family members to deal with, inexpensive live-in Hospice Care facilities, with trained end-of-life medical staff, may also be available. (These are *not* the same thing as nursing or “retirement” homes that require one to assign away one’s Social Security or retirement payments or give up other life savings.)
In addition, and depending on family feelings, there is also a group called Compassion and Choices. They used to be known as the Hemlock Society, and their mission is to help people through their last days as comfortably as possible. They also help their families cope both physically and emotionally. In States where it is possible to do so, they will also help you through a planned death. Of course this is not for everyone, and if family members have not already considered this, the idea can be very difficult to approach. If requested, Compassion and Choices can help here too.
Eric Bagai
I didn’t get the impression this family is there yet, but this is good information to have tucked in the back of their minds for when/if things go that way.
I’m not sure about America, but in England anything life-limiting can get a person accepted for day care at most hospices. If that applies where the OP’s parents live, perhaps they could arrange for her dad to spend the occasional day there so her mum could have some time to herself?
Hmm, I was going to suggest Hospice, but that has a totally different meaning in Canada. Here, Hospice is a volunteer organization that explicitly provides support for people going through trauma. My mom is one of the volunteers. Her clients have been pretty varied, ranging from people grieving over a recent death of a loved one, to support for people undergoing active treatment, or their loved ones. She often does things like drive people around, or just sit and listen. They also do death vigils for people who have no family, which is always sad but fulfilling for her.
I wonder if there’s something like that where you live? It’s good here, because the Hospice volunteer is completely neutral. In cases like yours, they would usually assign two volunteers, one for the sick patient, and one for the spouse, so there’s no feeling of competition. The volunteer is there for the client alone. Even where there is family, clients often appreciate that the volunteer has no baggage.
The other thing I would suggest other than housekeeping is personal chef or meal delivery service. You can have frozen meals delivered matching any dietary requirements, taking that off the list of things to do for your mom.
Love and good thoughts and Jedi hugs for you and yours, LW, first of all.
One strategy I’ve used successfully in my own similar situation (and apologies if you’re already doing this but I didn’t see it mentioned) was to set up some sort of phone date. I realized that some of what was causing me so much stress and exhaustion after my own not-fun phone calls was that I didn’t know when they were coming and would end up feeling blind-sided (which would then get in the way of other things I had planned potentially which just made things worse which just made me feel bad about THAT…, you get the idea). When I knew the phone call was coming before lunch on Sunday or after dinner on Tuesday or whatever (it didn’t have to be an exact time), I was much less stressed out in the long run because I could mentally prepare ahead of time and then have some sort of recovery activity or something planned for afterward. I know it’s not always feasible, but if you can work it out to get on some sort of schedule, it might help
Ooh, good one! Maybe make an arrangement with your mum that you’ll call her every X day of the week at Y o clock, roughly. That way, not only do you know when it’s coming and can psyche yourself up for it, but your mum gets to feel reassured by you actively seeking out conversation with her, which might also help her if she’s feeling isolated.
Oh yes, if you can do the calling so much the better! In my experience at least the more I felt like I at least had control over when/how I had to have the potentially distressing conversation, the easier (relatively speaking at least) it was to deal with.
And also you make a very good point about LW’s mom being reassured by not having to seek out the contact by her very kind and loving child saying “I want to make sure I know I check in with you every [x number of days]!” and that Mom doesn’t have to grasp at straws and cling to whatever chance she gets for emotional support (which, now that I think about it, could be making the feelings dumping worse, potentially).
Such good advice above, I’d like to add (having been the Daughter On The Spot) – give thanks to whatever god you credit with such things, or the universe of whatever, that you ae eight hours’ away. Seriously. You love them and want the best for them, but being the Daughter on the Spot is a dangerous place to be for one’s mental health!
First, echoing upthread – I’m so sorry you’re going through this, but glad that you’re taking care of yourself – including by writing this!
I was in a place much like your mom, for a while last year. My partner had a particularly ugly, low-survival-rate cancer – which, thankfully, was caught early and he’s now cancer-free and doing well. But it was a scary time, I had a very small pool of people to really rely on emotionally, and I relied on them A LOT.
Some things I did for myself that helped, that you may gently encourage your mom to do:
– Had one place/audience (a LiveJournal filter with only friends who had consented to be permissioned, but it could be an online support group, a completely private journal, etc., or an agreed-upon email address for, as TraLaLa makes a good point about upthread!) where I gave myself complete permission to talk through whatever I needed to. I did NOT expect people to comment on those posts quickly, because sometimes, there was some heavy shit, and my friends needed a day or three to find the spoons to reply.
– the reverse: made at lease one place/contact “cancer free zones,” and checked in on them frequently. Facebook was mine. I forced myself to make a status update every day. It forced me to remember that there other things going on in my life.
– avoided triggery situations and conversations as much as possible. Yeah, I flat-out avoided my poor friend who was a recent widow. I feel bad about that, but I needed it. Avoided movies about cancer patients. Asked my boss (I work in a library) if other people could deal with consumer health stuff for a while, because I had SO MUCH of my own consumer health research to do, and which she agreed to. Etc.
– At fallow times (between the diagnosis and the treatment strategy appointments, between chemo and surgery, between recovered-from-surgery and the beginning of followup care, when it was all hurry-up-and-wait for him) I took a couple of mini-vacations by myself or with friends (NOT family). Change of scenery, change of routine, distractions.
Some things that my support people did for me, that really helped me keep a handle on my freakouts, and which might help you help her:
– On the phone with my best friend, the first five minutes of a conversation was Cancer Update, and then she gently changed the subject and kept it that way.
– one particular friend always, ALWAYS asked how I was doing before she asked how he was doing. He’s a popular guy with a fairly public job, and I sometimes felt that I was just a conduit for updates, and that was hard when I was going through my own special hell. She got that, and made sure to check on ME.
– absolutely seconding Alphakitty’s suggestion of taking on one particular task. Everyone wanted to offer suggestions and ideas about naturopathic, diet, etc. treatment, and I just couldn’t deal with that on top of researching chemo and surgery stuff. So one friend who is pretty smart in that field anyway sorted through all the dreck; her recommendations were few, concise, and trusted, and when someone asked me, “hey, is he drinking Green Goo at eleven o’clock every morning?” I knew could just say, “thanks! I’ll look into that!” and hand it right off to her.
Good luck! This is a hard thing.
This is amazing!
I second the impact of having a friend who asks how YOU are. When I lost my Grandfather and I started telling people, they all immediately asked how my mum was coping, totally bypassing the fact that I was opening up to them about my own feelings and experience. It really hurt me that no-one could see that I was actually in a lot of pain, myself.
Only one person asked me how I was coping and by the time that happened this hurt had really built up and I just burst into tears because I had found someone willing to listen to me about my story.
And triggery stuff – yes! I had to avoid movies about old people for a good 12 months after.
Long time lurker here,
One thing I have found to be helpful in situations where you can’t be there with the person is to have an activity you can do “together” like a book club, a sewing/knitting/painting/crafty project, a sport, a video game, an ongoing board game (chess, checkers and backgammon tend to be easier to do long distance), write a children’s book together, or something else you are both passionate about/interested in/know absolutely nothing about.
Finding something you can talk about other than the emotionally draining updates on your dad’s health might help make you dread the phone calls less. And as someone (several people, I think) has already mentioned, make sure you are calling your mom first sometimes so she doesn’t feel abandoned (when I was studying overseas I often felt like my family didn’t want to talk to me because all I did was dump FEELINGS on them when we talked – turned out to be a little bit true… – but when they reached out to me first, I had a tendency to dump less).
Hope all the wonderful advice from the Captain and Awkwardeers is helping!
Good luck helping your mom find Team Mom. One person can’t be the sole support of another. Or … one person can, but it sucks for the one person.
Ahhhhmm… okay so I’m about to break out of lurking to be ~THAT PERSON~. I find some of AlphaKitty’s advice kind of problematic!
The whole idea of calling and telling some neighbours or church folks of the troubles the LW’s mom is going through is inappropriate boundary crossing, to me! I know that I’m the type of person that doesn’t like being looked after — when I need assistance, I have to be the one to seek it myself, or it just makes me mad and upset. If someone called people around me and filled them in on the goings on of my troubles, I’d be super upset with them! Maybe I’m keeping that stuff to myself because having other people try and help me is too exhausting to deal with. Maybe I’d rather avoid dealing with the pity and the explanations and the “oh that must be so hard” reminders — because, while well intentioned, they can make it worse for some folks! It’s entirely possible that LW’s mum is the same way.
LW, I think that, if you want to take AlphaKitty’s advice and increase your mother’s support network (which isn’t a bad plan in itself), you’d need to make absolute sure that your mother is comfortable with that. Otherwise, I think it’d potentially cause a problem between you and your mom…which probably isn’t a thing you need, what with a sick family member and all!
Also, I think that it’s not the LW’s job to look after her mother’s well being. First and foremost, LW has to look after their self! I mean, it is their father that’s sick, not just the mother’s husband. I think it’s reasonable to be supportive to your mom, LW, but you really can’t be expected to take responsibility for her well being. Even if she’s stubborn about accepting help, her emotional health is still her job to upkeep, not yours. All you can do is what you are able to do right now — if your mother wants a larger support network and you feel able to help her find one, then great. If she doesn’t, but she wants to have countless emotionally draining conversations with you that you don’t want, I think it’s okay for you to set a boundary and say “yo I can’t actually deal with this right now” sometimes.
Best of luck, LW, and a thousand bazillion Jedi Hugs. I hope you’re doing okay, and I hope your mom and dad are doing okay, too! You can get through this; I know it.
ALSO: other than the bits I mentioned, it was great advice! Great debut post, AlphaKitty. I look forward to reading more from you and the other guest bloggers.
I acknowledge the point about respecting your mother’s privacy and understanding that bringing people into her situation that she will now have to deal with whether she wants to or not may not qualify as “helpful” in her book; it is important to proceed delicately!
However, I disagree that sharing that she and her husband are going some tough times because of his medical issues makes her an object of pity. Reaching out is not a sign of weakness. Being human is not a weakness.
I mean, if someone came to you and said “my mom seems really overwhelmed by my father’s condition and all the stuff she has to do to help him. I hate that I can’t physically be there for her, and it would make me feel a lot better to know someone was checking in on her regularly, making sure she’s taking care of herself and has someone to talk to face-to-face about what she’s going through. I know it’s a lot to ask, but would you be willing to make a regular coffee date with her, or something like that?” would your reaction really be “Oh my god, that is *so* pathetic!” I can’t imagine it would… you don’t sound like a wretch!
I’m not making fun of you — I think a lot of people are deterred from asking for help for themselves by fear that other people will think less of them for needing it. But assuming you ask one of the vast number of normal, non-judgmental, compassionate people who understand that we all have our down times when a helping hand would make troubles more bearable, in my experience people are just glad to know they can provide that helping hand.
And sometimes, people do need to be given that helping hand without having to ask for it. I, too, am an independent and introverted soul who hates asking for help because it takes a lot for me to admit I need it. But 13 years ago, my daughter was in pediatric intensive care with kidney failure. One parent slept in her room every night, while the other (and my mother) would come home with our infant son for the night (we were trying to keep his life at least somewhat stable). And without our asking for anything, a friend organized a casserole brigade.
People ’round here aren’t big on locking doors, so every night whichever parent was the home parent would come home to find a casserole in the fridge with a note saying “bake at 350 for 40 minutes” or whatever. The only thing we ever had to think about food-wise was “do we need milk?” And it was HUGE. It made a convert out of me, to the idea that when someone is having a life crisis of the kind where outsiders can’t really help with the Big Thing, they can still make a huge difference by helping with the day-to-day stuff like eating and cleaning that doesn’t go away just because there’s a crisis on. I’ve been paying it forward ever since.
I understand where both of you are coming from. I am one of those people who has a hard time recognizing when I need help, and have been deeply thankful for people who gave me assistance without asking. When I do recognize the need, I am able to ask for help, but sometimes the self-awareness, it’s not there. So people who know me and that I trust who have the wisdom to intervene and take care of me when I am not capable of taking care of myself are wonderful. But that often works because they obtain my consent (particularly when it involves third parties), as in “I really would like to do X, Y, Z for you” or “I really think X, Y, Z would help and would be happy to entrain that with your permission.”
On the other hand, I also dislike everyone/lots of people/acquaintances/strangers being up in my business. Thinking they know what I need. Telling me what I should be doing/should have done/how I could have avoided the crisis. Wanting a ringside, intimate seat to the crisis du jour, so won’t I just open up and tell them how I feel and give a blow-by-blow description of events. And being asked to lend a hand sometimes makes people feel entitled to some degree of ownership over the person in crisis, with a right to know all of the details. Sometimes this comes from friends who mean well, but damn.
My cancer mentor died last year, and when I got the news that she was dying and it was time for me to fly out there to be with her at the end, I had to cancel some commitments. In the middle of these phone calls and travel arrangements, a friend called me, having been informed by a mutual friend, and wanted to know how my cancer mentor was doing. WTF? She’s dying, how do you think she’s doing? My friend wanted the gory details of her current condition and my reaction and all that. I did not need that and ended the call rather abruptly. So I can appreciate the desire for privacy and to minimize the speculation and gossip. Because managing the social shit on top of the medical and caretaking stuff is just too much sometimes. Someone who can act as point person to manage the social stuff, both positive (casserole brigades rock!) and negative can be a real lifesaver.
And the concern about the pity of bystanders is valid. Trust me, I know all about that. My cancer treatment ended close to 3 years ago, but some people have permanently labeled me as cancer person. So whenever we meet, they ask with that particularly concerned voice, “How are you feeling?” ” How’s your health?” or “Are you doing okay?” And usually they have the pity face on when they greet me. In effect, I am treated as the perpetual victim rather than a person. That is amazingly irritating and feels somewhat infantilizing.
Yeah — this the kind of stuff I’m worried about!
See, when you get the kind of assistance that’s actually helpful (like a casserole brigade) without all the “aw baby you doin’ okay tell me everything you are feeling” stuff, it’s fantastic. I’ve also been in the shitty victim of crummy medical issues place, and my Team Moi was excellent at helping me with this stuff (parents helped pay for groceries, partner would just come over and hang, I had some friends who would just listen or be there when I needed company, etc.). I was able to let these people in because I trusted them NOT to infantilize me or irritate me, but simply give me what I needed.
It’s why I worry about assembling a Team Mom without consulting Mom — I mean, LW isn’t there, so how would they know if they accidentally enlisted Condesention Make-It-About-Me Bot 3000 instead of a genuinely compassionate person?
Reaching out for help is a thing that takes an enormous amount of courage to do, but the keyword there really is “reaching OUT” — I don’t think help that is thrusted on a person is especially helpful. There has to be permission given for it to be helpful.
(Ex: “hey, I hear stuff is going on in your life right now. Would it help if I brought over some easy to prepare meals once a week?”)
We did have one of those people, who called to express concern with a tinge of that creepy excited air one local newscaster here gets when reporting particularly grisly news. I just shut her down with “too tired to chat,” which was true. So yeah, pick the crew carefully.
Chances are, if the LW reaches out to an older community (since I’m guessing her parents are older) many of them will have dealt with the loss/serious long-term illness of a spouse and will be more able to understand what her parents are going through. It’s good to consider the person, but also consider the community one is reaching out to. Many people find illnesses in the elderly more expected, I suppose, and as community members know how to respond more appropriately (than to illnesses in the younger/middle-aged). It’s still an awful, tragic, hard thing, but I think the response will be less “this awful thing defines you” than “this tragic thing happens and we will support you through it.”
Also the offer to set up, say, a casserole brigade may be overwhelming to the person in need (well, I’d have to contact everyone, and even if you did that, I’d had to remind everyone that he can’t eat meat and then contact them again in case you forgot to and look up their numbers and I don’t want to impose and….), so they say no. But if it’s presented as already done (Mom, I set this up with the neighbors, it’s all vegetarian, they were so happy to help, it’s a done deal, no we planned everything out, they’ve already started cooking, it’s fine. Expect them at 5:30 daily.) – thus no added worries – they may be much more likely to say yes because there’s not any perceived burden in the planning. Sometimes it can be a big help to have other people take small planning from you.
That’s kind of what I was thinking. If anyone had asked about bringing us dinners, I would reflexively have said “oh, that’s totally not necessary! My Mom’s here, between us we’ll cope.” And that would have been a shame, because it would have deprived us of something great: not just the food, but the experience of kindly elves. And it would have deprived each of those people of the joy of giving… Which for most people was all the return they had any thought of.
Sorry to hear about the LW’s family situation. Chronic illness is hard on everyone. I’m pretty sure that there are resources available that can make everybody’s life more pleasant and some of them can be located long distance. Is anybody from LW’s hometown social/family network professionally involved in healthcare, perhaps that cousin who is a nurse or respiratory therapist can help strategize. Other’s have suggested reaching out to a church congregation for support. Perhaps LW’s father is a veteran and is eligible for VA benefits that he didn’t know about or assistance from veterans organizations. It is very likely that the dialysis center has a social worker that will have other suggestions. Look in to what kind of respite care is available in their community so that mom can get out occasionally now or in the future.
It sounds like coordinating care between physicians and hospital systems has become challenging. Perhaps LW can research an integrated health care system that offers all the services that dad needs. What is affiliated with the dialysis center? Should LW’s father have a specialist in Family Medicine or Geriatrics be his primary MD. Is this primary MD going to have privileges in the preferred hospital? Is there a trusted pharmacist in the community that can be a source of advice (they need to make a point of filling all the meds in the same pharmacy system), double check the prescriptions, and be the family’s advocate to help avoid poly-pharmacy. By all means take advantage of the National Kidney Foundations resources http://www.kidney.org/patients/resources.cfm.
Palliative Care and hospice are related but not the same thing. LW’s father might benefit from a Palliative Care consultation which would be focused on making his quality of life better and his symptoms less burdensome. Studies have shown that cancer patients who received early Palliative Care interventions lived longer with a better quality of life than those who received standard treatment.
Finally a potentially awkward task that should be addressed sooner rather than later, communicating about end of life issues. It is very easy to get drawn into a cycle of what is likely to be futile treatment. If your father has strong feelings about what kind of care he desires at the end of his life he needs to articulate them while he can and make the proper arrangements regarding surrogate decision makers (possibly not LW’s mom), advanced directives, physician’s orders for life sustaining treatment, or whatever documents are recognized in your state. It is quite possible that LW father’s hospital or state’s health department has standard forms they can use. If LW’s father has clear wishes and LW’s mother is indecisive it might make the end much more pleasant for everybody.
Ah, knew I should have read further before replying. This is an excellent comment on care.
Really good advice there. I’d especially second the desirability of having a conversation about end of life care before it’s really necessary. It’s very difficult to make the “right” decisions about care when an emergency occurs, especially if there’s any question of witholding anything in order to avoid too much intervention later, that goes totally counter to all our instincts. Most people are unaware of the chain of events that can follow a seemingly simple decision, and it helps a lot to do a bit of reading about that up front (let me in passing recommend a couple recent related articles in the NYTimes http://newoldage.blogs.nytimes.com/2012/11/02/how-to-bypass-the-revolving-door/?ref=health ). It’s good also to have a plan when you’re confronted with health professionals who don’t know the background and may be too rushed, signed papers in hand and everything.
If it’s any consolation, talking these issues over with LW’s mother now will likely clarify her positions about herself, and help develop a trust and understanding between them that will pay off when LW is in time alone dealing with these issues over her mom..
Knocked it out of the park, AK! Particularly loved this:
Such a good point, and one we’re not really trained to notice. This kind of care makes such a difference.
It’s true! They might say that they can still feed themselves, but they can be fed by almost ANYONE. There are some tasks that can’t be delegated, and taking meals out of the way can definitely lessen that burden.
This summer I dropped off freezer-ready packages of vegetarian enchiladas for a friend and their partner when they were going through a medical crisis. The first rush of urgency had passed, so I think a lot of the initial helping hands had gradually faded away, but they were still dealing with a day-to-day slog of suckiness. I figured that 1) food is delicious 2) it would free up some of their energy/time/attention to focus on those things only they could do, and 3) it would remind them that they were loved and not alone.
I may have included a six-pack of Corona and a lime with my care package. That exact thing might not be appropriate under these circumstances, but a little something purely for the caregiver can be a good thing. A bottle of nail polish, a ridiculously good chocolate bar, some really outrageous socks, or whatever you think is right for that person to make it clear that they haven’t been forgotten amid all the concern over their loved one.
If you think it has any hope at all of happening, PUSH the counseling idea, and push it hard. Use the church/synagogue/mosque thing if you can/if it will help.
The reason for this is that you are both involved in one big emotional loss (pending) from different angles, and you can’t sort her out and sort yourself out. Beyond the overwhelming nature of caregiving, your mom is losing her spouse, the person she chose to walk life with. You are losing a parent.
And big giant Jedi hugs, as this SUCKS.
I agree. My mom had a lifelong leeriness about therapy. But after my dad died, her GP was v. worried about her and gave her the name of a therapist. I made the appointment for her, drove her to the first appointment, and sat in the waiting room to take her home afterward. Getting past that first appointment was all she needed, and the therapist did my mom worlds of good, but she would never have gone without a push.
I had to do that this year, after almost a year of being the ONLY PERSON my mother could truly talk to about my father’s declining health. It was so hard, and I didn’t have the emotional energy to keep telling her to please find someone else to talk to as it got closer to the end. I would beg her to tell someone, ANYONE else about how she was feeling, but it was always no, they wouldn’t understand, YOU’RE THE ONLY ONE.
Jedi hugs to you, LW. I hope that you can get through this all right, and your mother too.
I really agree with everything Beth said, not only as suggestions for your mom but also for you.
Also…
LW, I understand your wanting to get back to normal faster after your mom calls, but it also sounds like some scary change is happening in your family. Maybe some of your feelings are grief about what’s happening to your father. If so, then bursting into tears every five minutes for a while, as frustrating as it might be, IS (one kind of) normal. It might be best for you if you can take time and space for those reactions.
When my mom had her final illness I felt that way a lot. Eventually I got used to my body’s reactions, and then at least I was only grieving and anxious about my parents, and not also anxious about my grieving, if that makes any sense.
I found a person trained as a coach who worked as a grief counselor. I don’t know if you can afford to work with someone like that, but if so I’d recommend it. She helped me and my dad a lot, both practically and emotionally. (My dad is also anti-therapy but was willing to make an exception for her, given the circumstances.) Knowing he had a reliable source of emotional support other than me took a big burden off of me.
I also found an online support site for caregivers. My dad didn’t want to use it, but for me it helped a lot both practically and emotionally because a lot of people on the site were going through the same things, or had gone through them and could give me an idea what to expect.
As for giving your mom practical help—it can be tricky to know what will really help. If she’s elderly, giving her an electronic calendar or trying to get her to use the Internet more might just confuse her—older people and people who are stressed don’t learn as fast. People who are stressed are also resistant to change, including getting domestic help or help from the community if they aren’t in the habit of getting such help already. You might have to push hard on that if you think it’s important.
Also I found that trying to give my dad more information and more suggestions sometimes did not work—he was already overwhelmed with a surfeit of information and choices. I did lots of drug research, for example. But he was too stressed out to know what to do with it. (Even though he was a doctor.) So eventually I just took charge of certain tasks myself. I did get his permission, but by saying “I’m going to do this, unless you object” rather than “Would you like me to do this?” or “Let me know if there’s any way I can help.”
Good luck.
One of my friends once summarized parental care by “it’s not doing things for them that’s hard, it’s getting them to consent”. Another friend has recently decided to get housework help for herself – her mother refuses to Have A Stranger In The House, and would probably abuse them if she did, but my friend is exhausted and unable to keep up with her own life’s maintenance as well as her parents’. Whatever works, you know.. It’s a good thing LW doesn’t seem to have too much of that resistance problem, except perhaps for psychological help.
I’d definitely second both the advice to get consent, but mostly the advice to get consent at the last possible minute, after things are already setup and can be presented as on the verge of starting. When you’re going through something so utterly life-destroying as the loss of a spouse, I don’t think it’s really possible to evaluate practical options too rationally. It’s much easier to keep going in whatever previous patterns were established, without putting any energy into alternatives. I don’t think anyone sets out to get a casserole chain going for themselves, as of course they think that naturally they can handle it themselves. And indeed they can, most of the time, possibly even feel that cooking helps preserve an appearance of normality. But in fact there is great relief in not having to do chores, and normality is best preserved by the regular appearance of good hot meals.
A little late to the party, but I wanted to add some thoughts about what’s been helpful for me and my family, who are in a similar situation. My dad has been battling cancer for the past 4 years. I live about 8 hours away, and my brother lives about 5 hours away. What has worked for us may not be right for you, so please take what works for you and your situation and ignore the rest. There’s no one right way to do this.
My folks are very lucky to live in a small town (where they’ve lived for 20+ years) and have a big community to rely on. My mother was never a church person but my dad went to the Unitarian Church and they’ve been hugely helpful. If your family isn’t religious I would highly suggest the Unitarians as a great place to find a kind, helpful community of folks who aren’t pushy with their beliefs. Congreationalist and Quakers are also good bets.
I’m guessing one of the reasons your mother might be hesitant to ask for help is because she is the only one who knows all the information about your dad’s health and what he really needs. This is especially likely since it sounds like his care hasn’t always been great, and she might be feeling that if the doctors & nurses can’t even get it right, then no one can. It’s really hard to trust other people, even with small things, when the consequences could be deadly for your loved one. For instance, a lot of people here have been suggestion casserole brigades, which might be great for your situation, but are really, really, not helpful for ours. My dad is immunosuppressed and food needs to be prepared with really strict food safely guidelines, and everyone in our family has taken a course or read extensively about the precautions we need to take. This may not be the case with your family, but there are likely other particulars about his situation that might make your mom nervous about sharing the load.
I would suggest make a list of things you know will actually be helpful to your mom and run it by her first before you ask for help, so you don’t end up with a dozen casseroles they can’t eat. Maybe you can also help out by making a list of guidelines people need to follow (for instance, is your dad on a specific diet, or on medications that make anything off limits?). Your mom may feel better about accepting help if she know that you’ve been very clear to people about what will actually be helpful.
Does your dad have a bigger support network than your mom? My dad is much more extroverted than my mom and has a much bigger group of friends. Reach out to his friends and see if they can help out. If you dad is going to dialysis regularly and your mom doesn’t need to be there (ie, he won’t be speaking with the doctor), see if you can get a friend to drive him. One thing that has been great for both my parents is to have friends just come by to have coffee with my dad. He can’t eat at restaurants, and he misses socializing. Having friends come over to chat is great for my dad and frees my mom up to relax, get some work done, or run errands.
We’ve found help in some surprising places. For instance, my mom’s physical therapist and another woman from her office came by to do yard work. Do your parents live in your hometown? Do you still have friends there? They, or their parents are probably able to help out some. Your parents coworkers or former coworkers might be helpful too. My mom was involved in a local peace coalition, and a lot of them have been very supportive.
My mother also has taken charge of my dad’s health care, taking meticulous notes, setting up graphs to track my dad’s numbers, researching drug and alternative options. My brother bough my folks a small electronic recording device they could take along to doctor’s appointments. That way, my mom doesn’t have to take notes during the appointment and can focus more on listening and asking questions. They can also send us the audio file afterwards so we’re in the loop and we can spend less time on the phone discussing treatment. Or if your mom takes notes by hand, offer to type them up for her – this might do double duty in giving you information about your dad’s situation without talking to your mom, and also helps your mom by organizing & storing the information from the appointments. Or maybe you can help your mom out financially with getting a laptop or tablet to take with her to the doctor’s?
My mom usually sends my brother and I an email after each appointment summarizing what the news is. One thing that my mom has requested is that we let her know that we got each email, even if we don’t have time to respond in full. She gets the peace of mind that we’re in the loop, and my brother and I can then email her with a day and time when we’re available to chat in full.
I think situations where a loved one is fighting a chronic illness can be very draining, both for family and friends. People tend to really come out of the woodwork and rally when there is a big crisis, but when the illness has gone on for four years, people kind of…lose interest. They’re just not used to something like this, they really expect that by now, my dad would either be better, or dead. It’s just hard to keep the momentum up. I don’t really have any advice for this, just that it’s hard, and it’s okay to feel really shitty about it, and it’s okay to burn out and not want to deal with it at times.
My last suggestion is to make sure that your mom knows that you love her, and that you value what she is doing for your dad and your family, even if you’re not always emotionally available to talk with her.
My best to you and your family. Take care.