How will we care for our elderly?
September 21, 2023 7:17 AM   Subscribe

There is no “You’re doing great, Mama” discourse on Facebook for those who care for elders. We are still very much in the era where caring for old people is considered a dreadful task worthy of pity.

This resonated with me as my mother has been diagnosed with an incurable disease, and I'm learning how to cope with a situation that was inevitable--a parent ageing--but unprepared for.
posted by Kitteh (61 comments total) 38 users marked this as a favorite
 
I can see the point, but people laugh about their kids doing hilariously gross and/or annoying things because they know that in most cases their kids will grow out of it and whatever it is is a phase that will pass. Elder care only gets worse and the end result is almost never a healthy, happy, independent grown-up who might even remember to call you on your birthday. It's a lot harder situation to find humour in.
posted by jacquilynne at 7:26 AM on September 21, 2023 [69 favorites]


Unfortunately the answer is often 'because it is'. Old people are different from kids in size, and strength, and are (IMO) afforded a high level of assumed autonomy even when they are physically or mentally unable to use it anymore - retained respect I guess.

And the tools are less - less daycare, transport is harder.

Most of us aren't trained nurses either, not yet inured to the unfortunate indignities of dealing with aging parents. Bandaging sores. Medication that causes constipation or diarrhea. Stuck your hand up your parents butt recently? It's very possible you will have to.

Arranged the endless number of medical appointments, both home-based and hospital-based? Taken over their finances? You will. Hope you are good at your own, because it's just real easy to mess up.

In the past year, I've stayed up all night while an in-law screamed for the police. It was nothing like even dealing with a sick child. And then had to go to work for 8 hours.

Also kids grow up. The infant stage doesn't actually last that long. Caring for a parent can be many years longer.

And like Jacquilynne says, kids grow up and independent. Old parents die. The end result is very different.

Nothing but support for people who are living through this, in many different forms.
posted by The_Vegetables at 7:33 AM on September 21, 2023 [87 favorites]


Nothing but support for people who are living through this, in many different forms.

It can be said, however, that finding the humor in a situation can help a person cope.

The counter-argument to that, of course, is that it'd be a hell of a lot easier for people in a situation to find humor in it if society is offering them ANY kind of a safety net to cope with it in the first place. It's possible to laugh at having had to stick your hand up your mom's butt - but if you've had to use up all your vacation days in order TO do that, you're probably not gonna be laughing at it.
posted by EmpressCallipygos at 7:36 AM on September 21, 2023 [33 favorites]


Given how many people these days aren't having children, I'm really hoping that between now and when I need care, there are better structures for people in my boat. Right now, the basic assumption is that your kids will at a minimum coordinate your care (arrange for the nursing home, take over your finances), if not the very common situation of the kid(s) providing the actual in-home care.

I have a bunch of coworkers who are simultaneously raising children and caring for aging parents, and they universally feel stretched very thin. I know at least four people (plus myself) in the past couple of years who have either moved long distances in order to be nearer to aging parents, or who have paid out of pocket to move an aging parent cross-country to be near them. Several other people I know are grappling with that dilemma but haven't decided yet how to handle it.
posted by Dip Flash at 7:38 AM on September 21, 2023 [11 favorites]


It can be said, however, that finding the humor in a situation can help a person cope.

Oh yeah, I have jokes, they are just far too personal to share on social media. Complaining about other siblings who offer varying levels of support seems to help too. Doing that on social media takes you off Christmas card lists...
posted by The_Vegetables at 7:41 AM on September 21, 2023 [3 favorites]


The ten years caring for my mother with Parkinson's that made her increasingly grotesque and disabled were MUCH ameliorated when my spouse started going with me and we could laugh ourselves silly on the way home (though he had an unfortunate tendency to make faces over her oblivious head and I had to try not to laugh right then because she would have demanded an explanation). I also blogged about the experience in hilarious detail (friends-locked). It was horrifying and pitiable, and it was also funny as hell. She was still alert and astute but also demented and half in a dream, and the Parkinson's meant she was tilted sideways because up was thataway.

My father just died at 94 and was still hanging up on my sister when he got peevish even though she devoted a huge chunk of her life to caring for him against the advice of my brother and me. He was on hospice the last two years but told her when she said she couldn't take care of her that he never asked her to, and he was going to move to Mexico. That is funny.

I remember reading a James Thurbur story and his grandma who lived with them was obviously demented, and it was funny. I have told my family that they have my permission to laugh at me when I get old - oh, wait, I *am* old. When I get disabled, which I have been from time to time. Maybe they can make fun of me now. They do.

On preview, what Empress Callipygos said.
posted by Peach at 7:43 AM on September 21, 2023 [21 favorites]


I'm about to move my very elderly (95 and 87) but still mostly hale and mentally sharp parents into a different unit in the same condo building we live in. I really wanted to take a job I was offered in Seattle, but cannot be across the country from them because I'm the only child and sole caregiver, and they have a pretty vibrant social network and do not want to move. None of this is really any fun, but I'm not going to vent about it on Facebook, either.
posted by outgrown_hobnail at 7:50 AM on September 21, 2023 [19 favorites]


Everybody here is raising excellent points. Add to all of the above that your entire past with your parent accompanies you on this particular journey. So when your parent is refusing to, say, eat the food that the nursing home provides because they don’t like it, but said parent was a fanatical enforcer of the “I am not a short-order cook and you will eat it whether you like it or not” rule, it can push your buttons. A lot.

And that’s just the day-to-day parent-child stuff. People caring for abusive parents are dealing with an entirely different level of difficulty.
posted by corey flood at 7:53 AM on September 21, 2023 [48 favorites]


We are living this right now. A few years ago my family and I moved 1200+ miles so we could live closer to my wife's eldery parents. They both have Parkinson's. They need a LOT of help every day. My wife has effectively taken this on as a full-time (unpaid) job. She has 4 other siblings, but all of them have jobs or just live too far away. We are simply very lucky that my salary can support our family AND allow her to not have another job.

I can't imagine how the situation would look if we hadn't been able to move back home to help. It would be financially devastating.
posted by Doleful Creature at 7:55 AM on September 21, 2023 [7 favorites]


My partner and I have been spared this. My mother died fairly quickly of cancer when I was a young adult and there were other caregivers available, and my estranged father died off stage. My partner's farther similarly died of cancer when they were mostly a bystander, and their mother was in long term care for a very long time after a stroke, and died there too. I sincerely hope that we are graceful in our aging with the one person in the next generation who gives a hoot about us, because we certainly would not take it for granted.
posted by seanmpuckett at 7:56 AM on September 21, 2023 [3 favorites]


jacquilynne hit it on the head with the first comment in the thread. My wife and I are caring for her mother, as she suffers thru Alzheimer's. She's not going to get better or grow out of it. It gets worse and worse, and while we find the humor in some of the situations, there's not many people we could share it with. I'm sure all caregivers-to-elderly could relate, but at the end of the day we're so tired there's no time or energy to try to connect and share memes.
posted by jazon at 8:02 AM on September 21, 2023 [13 favorites]


My sister is the primary caretaker for our mom, who still has a good level of autonomy in her life but it's slowly being winnowed away, and frankly, we have to laugh about some of the absurdity. Our family is pretty witty and quick-tongued with humor, so even my mom--who is aware of her condition--will make jokes about how she forgets things, or riff with us about it. I know I don't have many of those years left before the Alzheimer's takes everything away, so we hold on to the laughs, even when they're hard.
posted by Kitteh at 8:04 AM on September 21, 2023 [12 favorites]


A robust new wave of humor about the ongoing encounter between middle-aged people and their parents would reaffirm all of our humanity and maybe take some of the pointless shame out of being old in the first place. We treat people with kid gloves when we don’t know what to do with them but we know we owe them something, and that seems like a horrible way to be treated, at any time in one’s life.

I mean - in my experience caring for grandparents and now my own parents, this perspective reeks of the privilege of having cared for parents that were worthy of being owed something.

A lot of us have parents who to varying degrees emotionally or physically abused us or have grandparents who are openly racist or homophobic and aren’t going to change. Caring for people is for the most part an obligation and not dignified in any way.


Kids are innocent, mean well, and are incompetent and that is generally funny the same way animals are. People who were or are mean and are also incompetent is just not the same and for many of us, we just choose not to talk about it because there isn’t anything we want to have to say out loud.
posted by openhearted at 8:25 AM on September 21, 2023 [20 favorites]


If you’re still using Xitter, there’s a hashtag: #AdventuresInEldercare

And it’s considered a dreadful task worthy of pity because for most people, that’s exactly what it is. Caring for my mother for the last year of her life totally changed the course of my life, and not for the better. Six years later, my life is still totally trashed, and while I’m working towards getting out of the hole it put me in, I may not be able to get back on track, since I’m already 63.
posted by MexicanYenta at 8:25 AM on September 21, 2023 [20 favorites]


My mother passed away at the age of 93 this May. During the last six months of her life, she resided with my eldest sister, a retired nurse. I was fortunate enough to be able to assist in her care on weekends, allowing my sister and brother-in-law to have some respite. It was undoubtedly occasionally challenging work, but I am immensely grateful for the opportunity to participate in her caregiving and for being present during her passing. We were able to personally provide for our mother's needs throughout. Towards the end, we required some additional assistance, such as a proper hospital bed, and the local Danish municipality was exceptionally cooperative and supportive.
posted by bouvin at 8:47 AM on September 21, 2023 [5 favorites]


My wife cared for her elderly parents for 10 years. We were fortunate that I earned enough so she could do it full time but unfortunate in that my work and our kids were in one country and her parents were in another. That decade nearly broke her; it was 4 years after they passed away before she relaxed enough to drop her shoulders and rediscover her neck. It nearly broke us too. It's a miracle it didn't.

It's even more of a miracle that, in hindsight, it looks like a good thing to have done - she learnt to love her parents. They'd not been good parents. Self involved, petty, emotional wrecks. They weren't close. Especially Mum and daughter. I will remember for ever the day, when seated on the other side of the room behind her and her Mum, I watched as she reached out, took her demented Mum's wrinkled old age spotted, crinkly hand and silently stroked it. I felt them both soften. I felt the love flow from one to another and back. It was the first show of affection for her Mum I'd seen in 30 years. I was moved to tears. I knew that was a turning point for her, for her Mum. I had no idea it was also a turning point for me and our marriage. It was as if, having accepted and embraced her Mum, it was now possible more fully to embrace herself. She changed. We changed. It was wonderful. Still is.

But here's the rub. I've seen enough of dementia and elderly care, assisted living and residential this that and the other, at it's most benign and adequately funded to know that it is not for me. No fucking way. No. No. No. I am a happy man. I've loved and am loved, drunk deep, deep, deep at the well of life. There is no need, no desire for me to cling on to any old life. I have a shack in the woods. I love it. I love the silence, the magnificent nothingness of it. I go whenever I can. I am happy to die there. I can hear the questions now. What happens if you can't feed yourself? I will die of hunger. But what if you have a fall, break your leg, can't move? Then I will die of a broken leg. I might be on the floor a long time, an agonised eternity who knows , but that is how I will pass. Incontinence? I will die in a pile of crap. Dementia? Yep, that as well.

My wife is 7 years younger than I (I'm 73). She plans to spend her last years in residential care and supported by our kids which they will do in a heart beat. They love her to pieces. She sort of, kind of knows that my preferences are very different but dismisses them as another of my eccentricities and is utterly convinced, I suspect, that I will subordinate them and fall in line with family views of these things as I have happily chosen to for the last 40 years. This time, I do not think I will. My love for my family and me as a part of it is greater than any love I might have for myself. But this is different. I need to die in truth. I need to die authentically. It pains me, it effing horrifies me, to think of the pain and distress I will cause them but somehow it has to happen.

There will be a conversation. Many I suspect. It has to be soon. I am in rude even robust good health but in my 70s. My son will be most understanding and he will be the most hurt. My daughter, a doctor, will refuse to even countenance it. My only hope is that her training in the Netherlands and knowledge of the 'living wills' we are all encouraged to write will create an opening of sorts. My wife will be bewildered and hurt too. As I write this, in increasing awareness of the hurt I will cause, I can hardly believe I am serious. But, I am, grimly and earnestly so, utterly persuaded that this is the right thing to do and, mad as I am, that somehow finally it will reward them too tho that is emphatically not why it will be done.

I had zero intention of voicing these thoughts here but I am very glad I have. I now see that I have much to learn about the saying of all this, even more about the whole raft of Solomonesque judgements that underpin it and completely blind to how best to limit the pain and distress I will cause to those I love without limit. Phew. Bloody hell. Better go and lie down.
posted by dutchrick at 8:48 AM on September 21, 2023 [73 favorites]


It gets worse and worse, and while we find the humor in some of the situations, there's not many people we could share it with. I'm sure all caregivers-to-elderly could relate, but at the end of the day we're so tired there's no time or energy to try to connect and share memes.

jazon, I encourage you to seek out the local Alzheimers Association. They will be able to direct you to caregiver support groups in your area. My support group was a helpful and welcome oasis for me when we were caring for my own mother. You will be among friends at all stages along the caregiving path, and jokes and humor will definitely be shared. It's necessary. You'll also receive a ton of ideas, tips and tricks, hacks, etc. that can help you along the way.
posted by Thorzdad at 9:02 AM on September 21, 2023 [4 favorites]


I'm very much dreading the approaching time that my elderly Mom requires more care. She's approaching 90, and has mobility and other physical issues, but she soldiers on alone in a condo, made possible and pleasant by a good financial base (condo ownership, Dad's pension) and a supportive circle of friends. It's a good life. Which is fortunate because none of us kids live within 200 km of her.

She's pleasant and still has her marbles, but is stubborn and a control freak. We haven't stayed as close as many families do. Many of the childhood family dynamics (guilt, manipulation) are still in play, and some ancient slights and feuds (longstanding mother-daughter battles, fat-shaming) mean that my other siblings remain somewhat disengaged. I love my Mom, and Mrs C and I visit monthly, but visits of over a couple of days duration are often close to unbearable. I've grown to hate and dread the annual Christmas farce...

Over the years we have contemplated and discussed options. Mrs C and I have occasionally entertained the idea of our relocating and having a Granny suite, and all us siblings have suggested after Dad passed, that Mom should consider relocating closer to kids and grandkids. But... no traction; she has insisted on staying put and does not want to anticipate or discuss future plans for when her physical needs are greater. And at this point, it would likely be too disruptive for her to relocate - needing new doctors, losing contact with friends, etc.

I'm jealous of families where a loving integration and support of their elder members has always been part of their whole family program. And my respect and sympathy to those of you who have endured and made sacrifices to provide parental care. It guts me to admit that I don't think I can step up there, and barring any change of heart from her, any further physical care my Mom requires in future will be from arranged home-care, or at a suitable facility, as dictated by her (pretty good) finances.

This situation has preoccupied me for a few years, and is a great source of guilt. My only point in sharing all this is to express my admiration and respect for those of you who have shouldered more of this burden. Thanks for sharing your situation, and for listening to mine.

(dutchrick - thanks. having observed others, it seems that life after 80 doesn't hold much that appeals to me, either. I'm jealous of your shack; I have a little sailboat with many of the same qualities. )
posted by Artful Codger at 9:08 AM on September 21, 2023 [6 favorites]


Thorzdad - we are well hooked into the local ALZ resources, and have connected with support groups in the past.

(In fact, if you watch their Longest Day info video (https://www.youtube.com/watch?v=UYtSLa7NiqQ) we appear in a "blink and you'll miss it" moment clip near the end)

Others going thru the same as us do understand, but that's a small pool with similar challenges as us. It's those without the direct experience that don't get it nor want to, which is kind of the thrust of the article.
posted by jazon at 9:22 AM on September 21, 2023 [1 favorite]


my adventure with my mom lasted four and a half years. Or as I've come to put it, "I went to visit her for four and a half weeks, realized she wasn't doing so well, so elected to stay on for four and a half months at which point one (or all) my siblings would step up and we'd work out something more amenable ... ended up staying four and a half years."

I could write a book about it all (not without a few laughs) which is a quick way of saying, there's way too much to say, good, bad and yes, ugly.

I was lucky enough that A. my mom had pretty much no dementia issues, never lost her wit, B. we'd always had a good, mutually supportive and respectful relationship, so there were no long term resentments etc poisoning things, C. one sibling did eventually get involved which made the last (most heavy duty) year survivable, D. her remote rural community had some great caregivers, so I was never entirely alone ...

But ...

It was still probably the most intense phase of my life. Growing old ain't for sissies as Bettie Davis is alleged to have said. To which I'd add, same for for their loved ones. You will be tested. We may wish for a sudden painless death at precisely the right moment (ie: right at the point that our slow decline would otherwise begin), but those sort of deaths almost never happen, they're the exceptions that prove the rule.

So ...

yes, it will happen to you, one way or another. You'll need elder care or you'll be called on to help in that regard (or both). For me, I'd have to say, taking care of my mom is one of the best things that's ever happened to me insofar as it's made me a kinder, more generous and forgiving person, and yes, stronger.

As for dealing with all the shit (the literal kind), trust that that should be the least of your concerns.
posted by philip-random at 9:29 AM on September 21, 2023 [13 favorites]


I read Ira Rosofsky's book Nasty Brutish and Long: Adventures in Eldercare a while back and it, in combination with Atul Gawande's book about his father, completely opened my eyes to how freaking hard this is for people, both those who are old and in need of help and those who are helping.

More recently I read Anne Basting's Creative Care: A Revolutionary Approach to Dementia and Elder Care, on ways to honor dignity and celebrate connection even during dementia.

If you are not yet in the thick of things (I'm in my 40s but have one parent already over 80), maybe we can start a virtual book club about this topic? Would this be a thing for MeFi Projects? I would welcome people who are also in the thick of things, but imagine that reading tomes is not what would be the most useful. (Private group chat to vent?)
posted by spamandkimchi at 9:35 AM on September 21, 2023 [23 favorites]


My dad died of a heart attack my junior year in college. My mom took five years to die of Alzheimer's, and the last two, or at least as much of them as she could talk during, she would occasionally wail "why can't I just die?". There are definitely some funny stories but they're all gallows humor. I know which way I hope to go.

Hugs to all y'all going through this. I see you and I know it sucks.
posted by gentlyepigrams at 9:52 AM on September 21, 2023 [7 favorites]


It's even more of a miracle that, in hindsight, it looks like a good thing to have done - she learnt to love her parents. They'd not been good parents. Self involved, petty, emotional wrecks. They weren't close. Especially Mum and daughter. I will remember for ever the day, when seated on the other side of the room behind her and her Mum, I watched as she reached out, took her demented Mum's wrinkled old age spotted, crinkly hand and silently stroked it. I felt them both soften. I felt the love flow from one to another and back. It was the first show of affection for her Mum I'd seen in 30 years. I was moved to tears. I knew that was a turning point for her, for her Mum. I had no idea it was also a turning point for me and our marriage. It was as if, having accepted and embraced her Mum, it was now possible more fully to embrace herself. She changed. We changed. It was wonderful. Still is.

I wanted to say something on this thread about how we sometimes we have the privilege of finding out that it doesn't matter that our parents were abusive or that they are racist shitheads etc. How sometimes, by some grace that life shines on us, we find meaning in the act of caring well for the people who raised us regardless of how badly they did so. But dutchrick already said it, from real life experience too which is more than I can claim for myself.

I'm in my 40s, my parents are about 70, and I am slowly (slllooowwwwlyyyy) discovering that my formerly super abusive parents, who are currently exhaustingly racist etc., do not have to be worthy for me to care about them - that the difficult, often triggering work of building a good relationship with them before they need eldercare is something I'm quite willing to do, almost like it's for me not for them. Not because I need them or their approval (lol I was cured of that need possibly before I turned 10!) but because my middle age has only intensified my belief in and devotion to the sentiment in that famous poem by John Donne which I have had up on my wall since I was 16:
No man is an island, entire of itself; every man is a piece of the continent, a part of the main. ... any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee.
This is not to say that anyone else is wrong or less evolved for not feeling the same way, or not being willing to care for their abusive/shitty parents. It's obviously more than possible for parents to screw us over so very badly that we don't want to find our way back to them. (For some reason writing this out brings DOLORES CLAIBORNE to mind, one of my favorite Stephen King books. In it a woman spends her whole life providing care and then eldercare for an abusive bitch - her word - and there's meaning in that choice and in her caregiving work, just as there is meaning in her choice to ensure she doesn't have to provide care to another abusive person in her life.)
posted by MiraK at 10:08 AM on September 21, 2023 [13 favorites]


Recently did a kind of a speed run of this… I live in the US, my folks are in the UK, we would video calls every so often and for a couple of calls my mum seemed off… a lot older, somehow diminished. My mum has never seemed old to me. A few weeks later I get a call and she’s gone in to hospital with pains and breathing trouble. The next call and it’s the worst news: cancer and it’s basically gone everywhere.

So there’s a frantic rush to sort out some transport paperwork, thanks AskMeFi, and a week later I’m over there. A day later she’s released from hospital but it’s not the GOOD kind of released from hospital. My parents place basically gets converted into a place of care for her and a lot of gizmos turn up for getting her from place to place, to the bathroom, in and out of a hospital bed etc.

I’m there for two weeks and it’s not like it’s the same as age but it felt like a preview of the sake things. And though I was glad I was there for her it sucked away a lot of what made her herself before she went.

Afterwards I’m back in the US, and we had my dad visit for a bit but he’s back there now, and now he seems a lot older. I’m left wondering what happens in years to come now and it’s not very comforting.
posted by Artw at 10:16 AM on September 21, 2023 [10 favorites]


The slow decline really is agonizing for all involved. Pretty much on the daily my father-in-law pleads, "why am I still here?" Because we rolled the cosmic dice and they came up with snake eyes, that's why. Not very comforting.

I know this is wrong and not really practical at all, but it makes me think I should plan to start taking on risky hobbies once I reach a certain age. Better to die in an unfortunate skydiving incident than be stuck in my house, shuffling from room to room while I wait for my adult children to change my diaper or help me eat food.
posted by Doleful Creature at 10:24 AM on September 21, 2023 [7 favorites]


The bit in the article about being like the Little Prince alone on a planet resonated with me. In my experience, eldercare can be extremely isolating, especially right around the time of death. That palliative time is very moment to moment in a way that no one else is quite living around you. And then it's over and the world suddenly speeds up around you while you kind of blink back into it. But then you are moving at the slow pace of grief, so you're still quite isolated in a lot of ways.

I don't quite know where I was going with this... I think I just wanted to share that thought.
posted by eekernohan at 10:50 AM on September 21, 2023 [16 favorites]


Regarding parenting children: there's a big difference between parenting abled children and disabled children. The article - and generally all discourse on parenting - only focuses on the former.
posted by splitpeasoup at 11:39 AM on September 21, 2023 [26 favorites]


dutchrick, I definitely identify with how you feel. I'm coming up to 70, getting a bit stiffer and slower but still able to do pretty much what I want. And then I look at my mother... 94, in a nursing home, in the far stages of dementia, bed-bound and incontinent, hardly knowing where she is. The staff there are wonderful, but that isn't where I want to end up. Unlike Mrs 43rd I'm not a very positive person, and the thought of where life can go from here worries me.

My father-in-law died suddenly about 10 years ago. So suddenly that I found him sitting in his armchair, holding his newspaper, with a cold cup of tea beside him. Massive stroke, and the doctor said he wouldn't have known a thing. That's what I'm putting in a request for, rather than the awful slow decline I've seen in both my parents.
posted by 43rdAnd9th at 11:52 AM on September 21, 2023 [7 favorites]


my parents are in their mid-70s and live 3 hours away from me in the middle of nowhere. luckily there is an ambulance outpost just a few minutes from their house, but the hospital is 45+ minutes away. they are in amazingly good health for their age, with just the "normal" age-related stuff. neither of them want to languish in a care facility. both of them joke about having "some pills for when it's time" and i don't really know that it IS a joke, since dad has made their urns already. (i think he's actually on version 3 at this point.) as hard as it would be, i think that might be the best course of action though, as i am an only child with lots of different issues and have neither the emotional or financial ability to care for them should they need it. i worry about it A LOT.
posted by misanthropicsarah at 11:57 AM on September 21, 2023 [5 favorites]


A lot of us have parents who to varying degrees emotionally or physically abused us or have grandparents who are openly racist or homophobic and aren’t going to change. Caring for people is for the most part an obligation and not dignified in any way.

For me, it's the expectation that I will provide care regardless of the fact that neither of my parents ever seemed to really give a shit about my mental or physical safety. How am I supposed to reconcile that? I didn't ask to be born and I sure as shit didn't ask to be born to those specific people who were too damaged/too unwilling/too oblivious to be simply decent parents. I never wanted the world, I just would have liked either of them to put my needs before theirs occasionally.

I, on the other hand, brought two children into the world with the knowledge that they also didn't ask for this. But I have zero expectations that they'll care for me when I'm old. I'm not even sure I want them to. I'd love to never, ever be a burden to them. My parents seemed/seem to thrive on being a burden to me.
posted by cooker girl at 12:09 PM on September 21, 2023 [11 favorites]


stuck in my house, shuffling from room to room while I wait for my adult children to change my diaper or help me eat food.

This is the way some people live their whole lives (actually, "shuffling from room to room" is not at all the worst case scenario in terms of disability, since it implies a fair degree of mobility still), and I just want to be careful that this thread doesn't go too much further into implying lives like that aren't aren't worth living.

Yes, it is grindingly difficult to be a caregiver for someone who is severely disabled, including especially family members, and especially those with age related disability where the prognosis is poor.

But I've read The Diving Bell and the Butterfly and put some thought into how I might find meaning in a life with severe disability, shoud I find myself in that position someday.

I would try to keep my mind active (I am already building up a hoard of audiobooks now) and I would accept whatever technological assistance was available to me -- no being too cool for a walker or screen reader.

I would try to NOTICE the beauty around me, the beauty in small things, the light on the trees out the window, the flowers on the blanket, the taste of my coffee. I think that's pretty much what humans are FOR anyway. Noticing the beauty of the universe. If we don't, who's gonna? What a waste if it all just goes unappreciated. Maybe I could even capture some of it in some way and help others notice too -- haikus or descriptive passages in letters I imagine dicatating to my phone.

I would remind myself that we're all born helpless and most of us die helpless, and there's no shame in that, so long as we make some effort to help other people during the time in between. I would understand that everyone is a "burden" to others at some point, and focus on trying to be as light as burden as I could manage. My good deeds in the world would be managing to be kind to those who help me, even when I'm in pain, and even when they mess up, or are slow. That's downright heroic, if you ask me. That takes courage and fortitude beyond words.

Fine if some of you don't think you could find value in a bed-bound, incontinent existence. But don't let that blind you to the nobility and dignity of people who are already existing that way.
posted by OnceUponATime at 12:14 PM on September 21, 2023 [45 favorites]


(I find the prospect of dementia scarier, and don't really know how I would cope with that. Except that, if I'm going to live in a world of memory and imagination, I hope I can make it a world with some beauty in it. Imagination is still a very human thing, after all.)
posted by OnceUponATime at 12:26 PM on September 21, 2023 [2 favorites]


I actually have a private Facebook group supporting each other through this. We actually named it after the hashtag I got on social media from Mexican Yenta!

It's been a real lifeline to have a little support group as we go through it and can vent or share resources.
posted by advicepig at 12:37 PM on September 21, 2023 [3 favorites]


I'm frankly scared of my parents going through this. I know I'm not organized enough to be the person they can lean on to really help and keep on top of things. I can try to be, but it's just... not my strengths.
I'm fortunate that my parents are financially stable, and will be able to hire help or seek a facility to be in when the time comes.

And, as an only child, who's childfree myself, I'm frankly spooked on my own behalf. I don't even know. I like the idea of a retirement/assisted living community, but dunno what that'll look like in my future. (sorry for venting)
posted by SaharaRose at 2:47 PM on September 21, 2023 [3 favorites]


dutchrick, and 43rdand9th, I urge you to make plans for being disabled unexpectedly, or gradual decline that you don't recognise until too late, and share those plans with your family. My dad was like you guys, fit and able at 70, and determined to go out on his own terms. Well, he didn't. He got to about 80, was in a house that was two story on a section with a steep slope, developed dementia that progressed rapidly, and instead of being found dead at the bottom of the garden (his expressed preference) my sister and I had to winkle him out of the place he loved and into residential care. He didn't want to go, and we hated doing it to him, but he couldn't take care of himself any more and we couldn't find any way to get help for him that would allow him to remain in place. But worse, we had to wing it because he had absolutely refused to discuss or contemplate this contingency - that he would be alive and too healthy for euthanasia but unable to run his own affairs - and we struggled trying to decide what was best when he had lost decision-making capability.

Incidentally Dad feared strokes, because his sister had a very serious stroke in her early 70s which didn't kill her but left her non-verbal and disabled. She lived for another decade and a half.
posted by i_am_joe's_spleen at 3:08 PM on September 21, 2023 [13 favorites]


You wonder how many older people ignore signs of things like cancer because they'd rather go quickly for their kids' sake. I know my father hid the small heart attacks he was having, because insurance already didn't cover him pre ACA and he was most likely deliberately trying to make the inevitable collapse his last one. He was only 50.

My mother told me be before she died at 69 that she didn't want to live anymore after two years of COPD. I think she tried to let the infection she died of take her; I also think it likely that it happens a lot.

We make staying alive when you're elderly so hard and expensive and painful. We could provide support and a space for love and care, and the ability to choose dignity more often, but we don't.

And I find myself thinking about my daughter and what she might have to deal with. I don't want to will myself to die early, or commit suicide, I don't want to languish in a nursing home, I don't want her to exhaust and bankrupt herself. I need a better option.
posted by emjaybee at 5:43 PM on September 21, 2023 [9 favorites]


Like SaharaRose, as an only child I'm scared at having to go through this most likely alone, but it's also some small comfort that I don't have any sibling relationships to ruin over it.
posted by gottabefunky at 8:59 PM on September 21, 2023 [2 favorites]


Discussions like this always remind me how mind-bending it is that some people oppose assisted suicide so strongly.
posted by gottabefunky at 9:07 PM on September 21, 2023 [11 favorites]


Assisted suicide is a human right but I have deep reservations about assisted suicide under capitalism.
posted by away for regrooving at 12:13 AM on September 22, 2023 [28 favorites]


...and therefore never send to know for whom the bells tolls; it tolls for thee.

Cemeteries are for the living. The dead don't need reminding.
posted by Pouteria at 12:38 AM on September 22, 2023


It's hugely problematic. Dad, with a PhD in chemistry and a stash of horrifying chemicals in the garage, was fully capable of ending his life if he really wanted to. He didn't... then as dementia started to kick in he expressed some regret... but when it fully got a grip on him, he lost the capacity to reflect and to feel bad about what he had lost, and he enjoyed people and food and physical comfort, and life wasn't so bad again. The only time I felt like an assisted death was a good thing for him was at the very, very end. And the morphine pump was key-locked so I couldn't give it a squeeze.
posted by i_am_joe's_spleen at 1:47 AM on September 22, 2023 [3 favorites]


The ten years caring for my mother with Parkinson's that made her increasingly grotesque

Can we please not refer to chronically ill/Disabled people as grotesque?

It is ableist and hurtful.
posted by chariot pulled by cassowaries at 3:01 AM on September 22, 2023 [11 favorites]


This thread is specifically about caregivers for the chronically ill, their particular feelings and burdens, and I don’t think it’s helpful to police what is obviously someone’s honestly described personal experience as a caregiver under difficult circumstances as though it were just another thoughtless ablist slur.
posted by mubba at 5:39 AM on September 22, 2023 [47 favorites]


We treat our elderly pets better than we treat our elderly (human) family members. It's gross and I dread my parents getting older than they are now.
posted by snwod at 6:41 AM on September 22, 2023 [2 favorites]


The anecdotes we laugh-cry about from when my mom cared for her parents through their last years in our home...those were for us. We remind each other of the time Nana insisted on going to the car dealership, remember what she did?! And oh my god, remember the whole thing with the bureau? Sheesh. Or there's that thing Grandpa said to the priest who came to give him last rites, wasn't that so him.

I'm not going to tell you the punchlines because they aren't FUNNY. These stories are shorthand for how everything changed or how we saw tiny bits of the people we loved through the wreckage or how we knew they were gone. You needed to have been there: before, during, and after.

Turning those experiences into light-hearted jokes for strangers is a skill set I certainly don't have. And have you ever told a personal story to someone who seems really interested, and partway through you realize they're consuming your bared heart as some juicy gossip? It feels bad. My stories about Nana aren't just my stories, they're her's too. I feel a responsibility in that.
posted by Baethan at 7:10 AM on September 22, 2023 [8 favorites]


Eh, the feelings I have about it are "wrong" for a woman to have, so no I'm not going to set myself up to be judged and piled on by people who don't know me or my father by joining a group.
posted by Selena777 at 7:23 AM on September 22, 2023 [8 favorites]


You wonder how many older people ignore signs of things like cancer because they'd rather go quickly for their kids' sake.

My partner's uncle did this. Was ignoring signs that at 82 he didn't just have prostate cancer but it was also in his lungs and bones. He called his brother up one day, "can you come and help me my legs won't work". (His daughter died young and son has a drug issue, so my partner's dad was the one he called for help). Uncle was gone in about a week, and that seemed to be what he wanted.

My dad died in 2019 after a 23 year battle with Parkinson's. One of my later visits, we had him out of the nursing home to spend some time at mom's apartment. After a huge struggle to get him back in the van, my mom burst into tears and said, "I just can't do this anymore" And there are millions of families who get to the end of their physical and emotional ropes during eldercare every day.

My mom is now 76, and my brother and I are very worried about her. She has battled a UTI and kidney stones for the past year and we have seen it affect her cognitive function. She does seem a bit better now that it has finally been resolved. But writing is on the wall, and my brother and I are facing the uphill battle to get her to move closer to one of us. She doesn't want to go, but are we supposed to quit our jobs to be closer to help out? There are no easy answers. Solidarity to everyone going through this difficult phase of life.
posted by weathergal at 8:22 AM on September 22, 2023 [2 favorites]


My dad died in 2019 after a 23 year battle with Parkinson's. One of my later visits, we had him out of the nursing home to spend some time at mom's apartment. After a huge struggle to get him back in the van, my mom burst into tears and said, "I just can't do this anymore" And there are millions of families who get to the end of their physical and emotional ropes during eldercare every day.

This was my mom too. She was the primary caretaker for my stepdad during his Parkinson's battle. It took so much out of her. I suspect her own experience being a caregiver is colouring her perspective towards my sister being hers.

I am lucky that I have a close relationship with my mom--my dad is another matter but I feel no guilt about him--and I realize that not everyone does. The guilt I am feeling is that I live in another country and cannot be there to help my sister as needed. (I have asked if she would me to come down more often to help out but she said we are not at the stage where that might be necessary. )
posted by Kitteh at 8:27 AM on September 22, 2023 [3 favorites]


My parents have blessedly been doing quite well - Dad turns 80 in two months, and is still really active and the same old dude he's always been. Mom's biggest health issues these days are probably more due to Lyme disease than age.

My brother and I haven't had this talk yet, but I've been meaning to - a lot of the health support is probably going to fall on him, since a) he lives less than an hour away from them and b) is always visiting with his wife and kids anyway since they moved there 14 years ago, and c) works from home. Meanwhile I a) am single, b) live 3 states away and c) have a traditional office-type job (or at least I would likely have one at the time). I plan to take him aside at some point over the next couple years to acknowledge this, and say that when we start getting to a care-for-elders point, I can plan on using all my vacations during those years to come and take the eldercare stuff on, to give him periodic breaks (with the understanding that I would then go home to NYC when the vacations are done).

We also have an aunt who is single and childless; and honestly, I'm probably going to be looking after her more, because I'm also similarly single and childless and I have a feeling no one's really thought about that. My brother has probably had a passing thought, but he will likely understandably be more focused on our own parents; and everyone in the family has been remarking for years that I am my aunt's Mini-Me, basically. She's a BIT closer to me, but not by much (she's only two states away). And fortunately she's also still active, and is younger than Mom so there's some time yet. But....I'm seeing the future there, basically.
posted by EmpressCallipygos at 8:36 AM on September 22, 2023 [2 favorites]


My elderly parent lives alone in a remote place, and plans to stay there until they need to be moved to a facility. (They sound okay with that now, but...)

I'd rather they set up house (and routines and social life) somewhere less remote while they're still healthy, but I think they're imagining either very good health or complete dependence, with no in-between stages. And maybe it will work out that way. This would be at least a little easier if we could know that.
posted by mersen at 8:37 AM on September 22, 2023 [3 favorites]


A suggestion for any book club: the issue of Quarterly Essay called Dear Life, by Karen Hitchcock. The link is to an extract, but you can get these as a digital subscription or through Australian libraries.
posted by harriet vane at 10:07 PM on September 22, 2023 [2 favorites]


This came up in my Facebook memories today, and it’s so sad, and so relevant.
posted by MexicanYenta at 5:58 AM on September 23, 2023 [1 favorite]


She doesn't want to go, but are we supposed to quit our jobs to be closer to help out? There are no easy answers.

My 80 year old mom recently told me that the siblings and I have to have a talk to figure out who’s going to live close to her to take care of her. She elaborated to say she means who’s going to drive her to doctors appointments, as if that’s the only thing she will need to do. It will fall to me (brother was raised as a boy who doesn’t do chores and sister is 2.5 hours by plane). I know I will need to finally become a car driver in the near future to get out to the suburbs. She needs to move out of her 2 acres of suburban yard upkeep and 5 bedroom house that she can’t clean. Every year she says “in two years.”
posted by Bunglegirl at 7:36 AM on September 24, 2023 [1 favorite]


Bunglegirl, I hear you on all that. Part of your upcoming discussion should be: finances, downsizing and her relocating closer, maybe a seniors residence that usually provide shuttles to medical appointments. In my experience, these ideas will be met with initial pushback, but all these have to be on the table too.

I very much sympathize with the presumptions of load on daughter vs son. I'm acutely aware that the bulk of assistance demanded from "me" would really be on my wife, and that's not a bus I intend to throw her under.
posted by Artful Codger at 8:59 AM on September 24, 2023 [5 favorites]


I really tried to warm my folks up to the idea of assisted living over the years, and dad was willing, but mom was not. Finally, it was a UTI that landed mom in the hospital and a round of COVID caught in the hospital that took mom's ability to stand up away from her that forced the issue. There's only so much you can do to try to reason with them and they get to make their own decisions as long as they are able.
posted by advicepig at 11:32 AM on September 25, 2023 [1 favorite]


MetaTalk
posted by tiny frying pan at 1:35 PM on September 26, 2023 [2 favorites]


I'd rather they set up house (and routines and social life) somewhere less remote while they're still healthy, but I think they're imagining either very good health or complete dependence, with no in-between stages.

Granny flats (or whatever they're called now) should be more of a thing. They would help to solve general housing shortages and they would make elder/disabled care a lot easier to manage for many people. You use the granny flat as a rental if you don't need the room, as an option/training wheels for older kids who haven't quite moved out yet, as an adjacent home for people who need regular assistance but not constant watching, and eventually as a place where the older people in your family (maybe your parents, maybe you) can live without totally giving up autonomy. Moving to live with one of your children when you're getting too old to take care of yourself could be like downsizing into a small apartment attached to their home, not wedging your entire being into a spare bedroom.
posted by pracowity at 6:35 AM on September 28, 2023 [2 favorites]


Granny flats (or whatever they're called now) should be more of a thing.

Oh totally. Obviously it's something that should be part of life planning, for both adult child and parent. And it requires a bit of willingness on the part of the elderly parent to anticipate and discuss their own likely later needs, and to relocate closer to their children when reasonable. (are U listening, Mom?)
posted by Artful Codger at 8:39 AM on September 28, 2023 [1 favorite]


On the one hand those are super popular right now and I’m seeing a lot of them go up, on the downside I think that’s because of air b n b ing and subletting and the general skywards zoom of housing costs and people squeezing into smaller places.
posted by Artw at 2:44 PM on September 28, 2023 [1 favorite]


So I suggested a book club here, and now am actually pushing it forward! Discussion will most likely be using FanFare (and perhaps a sporadic meet up event to have a real-time chat). Relevant MetaTalk thread. Book and or essay suggestions welcome!
posted by spamandkimchi at 10:15 AM on October 7, 2023 [2 favorites]


Thanks, spamandkimchi. I have put a couple of suggestions in the MeTa.
posted by paduasoy at 11:37 AM on October 11, 2023 [1 favorite]


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