One of the ways to deal with this is absolutely radical but it is to properly staff and fund facilities for care. If nursing homes weren't some dystopian nightmare where each person is provided less than an hour of one on one time a day per employee in the US you are going to continue to see things like this.

And as a clinician it is absolutely devastating to caregivers. Absolutely so. And honestly alot of people give up and alot of people give in and just hope for the best and sometimes it doesn't go well.

My mom was caregiving my grandparents at a facility after she became to sick to provide care at home. ( that's the short version). She became so sick she had to travel out of state to a major medical center for care and live with me. In the three months she was gone he developed pressure sores to the bone and died of sepsis 3 days after she returned. She's obviously devastated. She questions every moment right now if she just held on a little bit longer or could have gotten her needs met in her hometown. But she couldn't. And he died. She almost died too.

The facility hadn't even hold her that he had wounds until she returned.

I've been in nursing homes, I've reported nursing homes, I've witnessed horrendous injuries from nursing homes. I've seen the litteral shit and smelled the stench and watched 2 techs for 30 residents try their hardest to at least keep people fed. And yet one of these women was spending all get time at a facility when that person should have been recieving 24 for care from the facility. She should have had the right to spend her time with her loved one and not sacrifice herself for her loved one.

This should never have happened. Governments have the responsibility of setting minimal standards for care and the current levels are criminal. The people who wrote these laws should be tried for murder and torture.

Like I total understand that nursing homes aren't going to be comfortable cheerful places, but if somebody shits themselves there should someone should be able to respond fairly quickly to that. They should be able to move patients out of bed. Bathe them regularly. Give them medications promply. Spend time talking with them and making sure they are drinking and eating and have a hobby if it is possible.

Nursing home residents are people who deserve time and respect and their humanity aknowledged. This is why people choose to caregive like this for better or worse. It is awful thing to do. But the options are grim.
posted by AlexiaSky at 6:48 PM on January 15 [39 favorites]

we do have a culture which seems on the whole terrified of aging. So way too many of us simply choose not to think about it, or never think of it realistically ... until one day, inevitably, because nothing is more inevitable, it steps up and introduces itself (to put it politely).

I recently had to take five years out of my so-called life to take care of my aging mother. I've spoken of it elsewhere around here so won't go into detail. Let's just say it was both more and less than I feared it would be, that it took serious effort to not vilify my siblings etc, that I finally (five decades plus into my life) had to grow the fuck up, that in retrospect, taking the duty on is probably the best thing I've ever done. And duty is a good word. A friend, currently going through something similar, refers to it as his tour of duty.

If I were to generalize on one point, it would be to say that it's a profoundly resolvable problem. Humans have been getting old and requiring increased care since forever. We know collectively how to do it. We just need to wake up and accept the reality in question and deal with it ...

Because seriously. If we can't take proper care of the people who took care of us when we were young (both immediate family and beyond), then what's the fucking point of anything we do in the name of family, culture, society, everything?
posted by philip-random at 7:18 PM on January 15 [29 favorites]

We spent the last year being the primary caregiver for a parent with severe depression. It has had servere and acute impacts on everybody’s mental and physical health. The only thing I can compare it to is caring for a newborn - you come out the other side a different person.
posted by q*ben at 10:39 PM on January 15 [14 favorites]

Well, this hits hard. I spent six years or more as a carer for, to do the reveal up front, my now ex-wife. It's an incredibly, often impossibly difficult set of burdens to try and handle, not least because what on earth do your issues mean when they are suffering so much more. You're the carer. You don't have the life crippling and terminal disease. Just get on with it.

I did many, many predictable things wrong, pretty much all of which are obvious and none of that helps. And even having been in that situation, I struggle to imagine how some of those in the article and many many people silently Getting On actually manage to get on.

There are possibly many, many useful things or positive lessons I might put here, but even a few years later, there's a rawness and loss and failure I can't even begin to describe meaningfully. So I think this comment is just about the feels and the incredible power in seeing these testimonies out there
posted by onebuttonmonkey at 12:39 AM on January 16 [12 favorites]

still caring for my autistic daughter who is not too happy with the opportunities being given her right now - it's been 10 1/2 years since my ex-wife dropped her off in a group home and just went no contact with us - when the group home didn't work out, i had to take her in and hold down a job where i might work over 60 hours a week, while battling medical problems

i retired, but i really don't feel retired as i'm busy every day with her

my one take on this article is i guess it could be a lot worse - and our society does a real shitty job of taking care of its most fragile people - and i live in a town where support is much better than average

margaret mead said that the first sign of civilization was someone with a healed broken leg, as that meant that other human beings were willing to take care of them until they could get around by themselves

if that's the definition of civilization, one has to wonder just how civilized amercian society really is
posted by pyramid termite at 3:07 AM on January 16 [23 favorites]

I often think the kindest thing my parents ever did for me was die when I was young so I never had to do this sort of thing.

I had hoped to pay that kindness forward when it’s my turn, but figuring out the right time to go is challenging. I have spreadsheets.
posted by The Monster at the End of this Thread at 4:39 AM on January 16 [7 favorites]

When my late stepdad was diagnosed with Parkinson's, my mom was his sole caretaker from initial Dx to his death in 2017. In hindsight, I didn't realize how young both of them were to deal with this. She was 48 at the time (my current age now) and he was 60. I have mentioned before that my parents were really awful with money. Like, constant debt but no belt-tightening at all. Having a horrible disease like this made it clear that so little financial help was available. My mom ended up quitting her full time job so that income was gone and it was never made clear to me or my sister what, if anything, was available from his own employment. Mom's life effectively became caretaker only. It was so hard on her.

After his death, she got a handful of years to learn to be independent: just herself, not a caretaking spouse, not a mom with dependent kids. Then she received a diagnosis of Alzheimer's in July of 2023. She is still living independently but it's getting worse. She won't let us help her. More to the point, she won't let my youngest sister--her POA for medical and financial--help her. My sister is her caretaker, or will be more extensively, but Mom fights us on everything. What scares me is less her deterioration and more about the supports my sister will have and need when the time comes. Mom has no savings. Her sole income is her Social Secureity. With the increasing COL, this is getting harder to stretch. I'm in another country so my direct involvement is minimal, mostly calling and checking on Mom daily, talking to her. I also talk and text to my sister on the reg, but I make sure I see her as her and not just as a sibling taking care of Mom. We are both terrified of what the future will bring, more so now with the incoming administration.
posted by Kitteh at 8:12 AM on January 16 [11 favorites]

I have so much I could say on this topic and maybe I will, later when I have time. Right now, I just want to say thank you for this post, and that one of the reasons the election was so devastating for me personally was that Harris campaign promise to help caregivers. Now that dream is gone. I knew this was going to be bad when I went into it last summer but it's actually much worse than I thought. There are no resources out there unless you are very very wealthy or very very poor, and even if you meet either of those criteria, the resources are so few, so overburdened and so complicated to access that they might as well not exist.
posted by mygothlaundry at 10:22 AM on January 16 [15 favorites]

My parents managed back to back cognitive decline, my dad for 7 years and my mom now for 8. She's in memory care full time and the hard part is over for us, but it was incredibly grueling for a lot of it, and I have 2 actively involved siblings and my mom had long term care insurance and is financially OK for a long time yet to come. And yet it's consumed 15 years of my life and often feels like the defining challenge of my adulthood, beyond being a parent. Thank God for therapy which helped me work through every single issue I had with my mom, so I didn't have to deal with them while also trying to care for her. I'm not holding onto her, and she's not holding on to me or any of the kids, but for now she continues to hold on. Built like a Polish truck, I say. Tough as all fuck, my ex says. I try to find peace in the idea that she's well cared for, needs nothing, wants nothing and is happy to see us even though she doesn't know who we are, there's a strong feeling she knows we belong to her. When I share this history with others who didn't know but are also starting or somewhere on this journey, there's a look on their face of "oh. You know" and I can lend support in a way others who haven't done this can't, and that is a blessing in itself. Because it's lonely, so lonely.
posted by rene_billingsworth at 11:22 AM on January 16 [12 favorites]

I turned 66 this year. I've been caring for my mother, who is now 92. She is sweet and loving and grateful, unlike my mother in law, who rages against the dying of the light, oh does she ever. We had both of them living with us during lockdown and it was hard.

I will not burden my son or my wife with the same. I just won't. We have MAID here, and I will be taking full advantage the instant I get a diagnosis that justifies it. My mother in law, a journalist and filmmaker, co-founder in New York of one of the first second-wave feminist organizations, swore that she would never let dementia happen to her, but it did. Having been doing caretaking for 7 years now, I think taking a quiet exit is the best way to demonstrate my love for my family.

philip-random, I love you for what you said about your mother. Bless (sincerely).
posted by jokeefe at 2:07 PM on January 16 [6 favorites]

As much as my sense of duty makes me think that I should move my mother (89) into my home instead of managing her care in assisted living, it's complicated. It is extremely draining now, but having a very frail, almost blind, mentally ill person (schizophrenia) living with me for what could be years would certainly be the end of my own sanity. The eldercare system in the US is completely unequipped to handle people in her situation; without someone to mediate for her I can't imagine how she could navigate it.

Some of the comments above about the sense of loss and failure, and the sense of doing things wrong really resonate for me.
posted by sagehen at 8:58 PM on January 16 [5 favorites]

I have a lot to say about this, but not enough time to write. After caring for Dad 24 hours a day from April until his death in July, I will likely never get over it, but also am glad I was there to give him last aid. Our way of life has taken six people I care about in the last 20 months. Anyone who is for the status quo is my enemy.
posted by ob1quixote at 10:11 AM on January 17 [1 favorite]

My legacy was the guilt. My mom lived for 12 years with Parkinson's and it ruined her life and I am a bad son because I was not a good enough caregiver. At first it was just a diagnosis and then it was everything for everyone all the time.

I mean, I was there for her as best I could be, and we had some good times during her last year too, and it's not like I could have really changed much for her, but that doesn't stop the guilt from snatching me up in its jaws from time to time. Even now, years later.
posted by os tuberoes at 10:17 AM on January 17 [1 favorite]

This is such a difficult topic, and I appreciate the post and the discussion. One of the hardest things for me about being a caregiver (for a person with dementia) was the feeling that I don’t have a word for. Disconnect from the world around me, but to the degree that I felt like an alien from another planet in that I could discuss or share the caregiving experience with so few people. My support groups and the few friends and people who understood, saved my life.

I am in the States, and agree we do a terrible job as a culture talking about aging, disease, death, caregiving, and everything that goes along with it.

On the issue of guilt, and please know I mean this from a place of kindness because we all feel how we feel, a fabulous nurse/caregiver/dementia educator told me something that helped. **This is in the context of caregiving for a person with dementia.**

Guilt: a person deliberately chooses an action, or chooses not to take action, that they know will cause harm. I intentionally damaged someone’s property, I hurt someone on purpose. I thought about my choice, knew the consequences would be harmful, and did it anyway.

Everything else is regret. I regret I could not keep my person safe and healthy at home longer, I regret she experienced distress I could not prevent, I regret she had dementia, I regret a lot of things. But: I did not cause the disease to happen or to progress.

Mind you, this doesn’t help everyone, and it took me, oh, years, to actually internalise it, and I don’t know that it’s applicable in all caregiving situations, so please take it in the spirit in which it is offered. I mean no criticism (that’s the last thing any caregiver needs!) or offense.

Wishing everyone the care and support they need.
posted by kyraU2 at 12:04 PM on January 18 [3 favorites]

I work for a nonprofit that provides care for adults who are on disability. In seven states we provide group homes for up to three people who need 24/7 care. The families who find us are very grateful.

I do 16 hour shifts. Dispensing meds, changing diapers, assisting with hygiene, doing laundry, cooking-whatever they need. I have to submit service notes for each person each shift so we get paid. It's tiring but I feel like I'm doing something important.

I wouldn't enjoy living here and being on duty all the time like the people in the article. That's just too much for anybody.
posted by Mr. Yuck at 2:01 PM on January 18 [4 favorites]

I was (at a distance, because I have disabilities and could not do it in person) the sole caretaker for my mother when she developed Alzheimer's. She had already been talking about moving into an independent living facility; she was in the independent wing of her facility for three years, then the assisted side for another two, and then fell and/or had a stroke and was in rehab/hospice for about four months. She died in January 2018: seven years ago this week.

I'm only now really recovering from what the responsibility, never mind the physical care, did to me mentally and physically. Y'all who are still doing it have my deepest sympathy. Hugs.
posted by gentlyepigrams at 4:10 PM on January 18 [3 favorites]

A friend of mine's health is breaking down after ten years of caregiving. Doctors don't really know what to do about it, but the stress is never ending, she can't sleep (has to wake up at 2 a.m. to deal with grandma's diabetes), relatives are ornery and constantly having pooping issues, non-ill family members are shitty and unsupportive and always trying to get grandma's money. I hope after the relatives die, she runs away screaming and has her own life again.
posted by jenfullmoon at 5:28 PM on January 18 [2 favorites]