Managing resentment towards brothers about caregiving
July 1, 2023 10:48 AM   Subscribe

It’s very well established that they’ll never lift a finger. Already tried being angry, doesn’t help. Quashed that down for a few years but as COL goes up and I remain unemployable because I’m either at the hospital, cleaning, cooking, or managing behaviour until a spot opens up in adult daycare (if that even works which is highly in question), I’m more and more angry, and I don’t know what to do with it.

They have their reasons (they claim to be traumatized by behaviour they point blank refuse to understand, literally one said “I don’t want to read about FTD because I don’t want to understand”). Additionally, it’s extremely fucking convenient to not give a shit and let your sister eat the costs of caregiving.

My dad lost his assets because of terrible decision making related to FTD. He was later in a car accident that yielded a decent sum of money, which has been funding whatever his government pension doesn’t cover. (He never paid into CPP because he was a sole proprietor so it’s really the bare minimum you would get in Canada.) That sum is now almost at its end.

My dad’s physical health is pretty good. I don’t know how many years he has left. (He’s 90 but can still walk circles around me believe it or not, I do have OA but still.) But he has mixed dementia including FTD. A care coordinator recently said that he is technically eligible for an LTC, but he’d be lowest priority. Not that I’d want to send him to one, a recent journalistic analysis of reports found that 85% of them engage in *repeated* neglect and abuse. That aside, just saw a geriatrician and people with FTD even if they aren’t aggressive (which my dad isn’t) are frequently refused entry to LTC.

Daycare is my out. It has to work… I haven’t even left the city in five years. Haven’t been able to go out on the weekend in case something happens. I spend my life in hospitals. I cared for him, without a car, through a concussion and other health issues.

My brothers do not give a fuck about my dad (their business ultimately) but they have clearly shown they don’t give a fuck about me. I’m furious. Ok I give one brother an out because he has a young family and his own health issues and he lives out of town. The other has no kids and lives ten minutes away. I STILL have to cross three transit systems (1.25 hours each way) for everything, grocery shopping, emergencies, whatever. Ten fucking minutes…

The ER doc last night told me I’m doing an exceptional job as a caregiver. That my dad is doing better than most of the patients he’s seen. As well as anyone could hope. I told my mom this and she cried. “Does anyone ask about your life?” No, no one gives a shit.

I am not far from 50 and I am terrified for my own future. I don’t have kids who can take care of me (not that anyone should expect it but hey it would be something to have someone between you and the whims of politics and institutions). I don’t have a career.

As well, the brother who is single and makes a six figure salary told me he won’t be able to help financially. When daycare starts, I’ll be able to work but will be making under the median wage. Again it will be on me.

There’s no way I’m talking to the one brother after our parents go. Never met such a selfish asshole in my life. I cannot imagine being that selfish. I don’t have a framework for understanding how it’s possible.

Ranting really. How can I manage this anger and find a way to plan for my own life.
posted by cotton dress sock to Human Relations (41 answers total) 14 users marked this as a favorite
I cannot imagine being that selfish. I don’t have a framework for understanding how it’s possible.

How do you rate the chance that FTD runs in your family?
posted by flabdablet at 11:05 AM on July 1, 2023

Best answer: The anger is adaptive. Your life is not working for you, something needs to change, anger is the wake up call that tries to drive change. Listen to it.

Maybe start with a relatively small goal for yourself. It is time for you to leave town for a week. Make that happen. Maybe Mom can arrange for home health while you’re gone. Maybe you have to be more drastic to free cash for home health so you can take a vacation (such as changing living situations). Do what it takes, you are a priority.
posted by shock muppet at 11:27 AM on July 1, 2023 [21 favorites]

Response by poster: Absent testing I think there’s a decent chance it’s idiopathic or related to the six serious car accidents/TBIs my dad suffered. My single brother was just diagnosed with ASD, however I was part of the assesssment and I know he significantly embellished and omitted information to get that diagnosis so he could advocate for permanent WFH. (This is a guy who, when I was returning to my country after ending an abusive relationship in another, with five years of my life packed into the two suitcases the airline allowed, asked me to ditch one so I could bring him back a keyboard he wanted. Does ASD make people do things like that?)
posted by cotton dress sock at 11:29 AM on July 1, 2023 [1 favorite]

Response by poster: >Maybe Mom can arrange for home health while you’re gone.

My parents have been divorced for 30 years. My mom does help me out sometimes, will even eg go to the pharmacy for me when she can, but in no way do I want to involve her in his care directly. It’s 💯 on me in terms of family members and legal responsibilities. (My dad does have close friends who take him two days a week without whom I would lose my mind.)
posted by cotton dress sock at 11:32 AM on July 1, 2023

I'm curious, if you were part of the assessment, if you can blackmail him. You know, purely theoretically. As in "I need a check from you for $x [money you would use to hire other help or buy a car or otherwise make your life easier] if you don't want my conscience to kick on and cause me to call your HR department regarding your diagnosis falsification."
posted by fingersandtoes at 11:33 AM on July 1, 2023 [3 favorites]

Response by poster: (Last from me… Ah no I couldn’t do that. It’s still possible he has ASD, I mean I thought it would be, to some degree, otherwise I wouldn’t have participated. He sort of played things up a little I guess, but it wasn’t a million miles away from the truth either. No there isn’t a way of making him do anything, or any sibling who doesn’t want to, that much I know from talking to other caregivers.)
posted by cotton dress sock at 11:44 AM on July 1, 2023

When I'm really mad at people for being who they are, the way I get over it is by plotting increasingly baroque downfalls for them until I make myself laugh.
posted by flabdablet at 12:08 PM on July 1, 2023 [3 favorites]

Best answer: Does ASD make people do things like that?

Not necessarily, but "lives with ASD" and "is a colossal asshole" aren't mutually exclusive.

I've heard it from many people involved in caregiving that when there are multiple children, it's common that one will do all the work,and the others will sit back. Part of it could be that they think you're managing it and don't need/want help. They need to (somehow) understand that you're on the brink of not managing it any longer.
posted by scruss at 12:16 PM on July 1, 2023 [10 favorites]

Just spitballing, but is there any way that you can use the legal system to force your brothers to at least pony up some money to throw at the problem? Like, is it possible to sue them to make them give a shit?

Also, this doesn't help at all, but I can't help but noticing that this inequity is deeply gendered, and thus distressingly common.
posted by pleasant_confusion at 12:40 PM on July 1, 2023 [11 favorites]

If your father is of sound mind, discuss his estate with him. You should get all of the assets, literally to compensate you for the lack of income you've had to absorb.
posted by DarlingBri at 12:52 PM on July 1, 2023 [47 favorites]

I don't think there is anything that can make your anger toward your brothers go away. I would be absolutely seething with rage in your shoes.

In terms of not letting it take over your life, I submit that the anger is not the problem. Your brothers' actions are a problem, but they are a problem you can't change.

I think you need to focus on changing, at least a little bit, the care arrangements for your dad. In the U.S., there are social workers who specialize in helping families plan for elder care. Some local government agencies have them, and virtually all hospitals. Does something like this exist in Canada?

Option A: You seem averse to a long term care facility, and while many of them may be no good, some probably are. Your dad is able to walk around, so he will not need the highest level of care.

Option B: What happens for folks who need some care but don't have any money? Does the government pay for any at-home care? It may be that your dad will need to "use up" all of his money before he qualifies for government payment for services. This is typical and inevitable.

There are probably other options, i am not an expert, I just want you to recognize that there are many families in similar situations for whom the children are *not* the primary caretakers. You shouldn't have to be if it isn't working for you.
posted by mai at 12:55 PM on July 1, 2023 [6 favorites]

Best answer: I think you need to sign your father up for long term care. This is not sustainable for you, and you can't kill yourself taking care of him. So especially if there's going to be a waitlist because of his priority status, now is the time to sign up.

I completely understand your worries about abuse and neglect, and they're real and valid. But here's the difference between your dad and a lot of other patients: he has you. You will evaluate any facility they try to place him in. You will visit, including at times when they're not expecting you. You will meet with and talk to his medical team, and ask questions, and advocate for him. You will check to make sure his room is clean and that he doesn't have unexplained injuries and that he's getting the care he needs. And you'll be able to do all of that because you'll have some breathing room, some space for your own life. That's what you will do.

In terms of your brothers, if I were you, I'd take a break from talking with them. They're not supportive, and it seems like talking with them about your dad makes you feel worse, not better. It doesn't have to be that you're permanently cutting them off, but take as much time as you need. You do not owe it to them to keep them updated on all the work you're doing to care for their father when they refuse to help. Just don't talk to them, until you feel ready, or until they step up and actually help.

I'm so sorry you and your loved ones are going through this. I hope your father remains in as good health as possible, and that you're able to find some space and peace for yourself.
posted by decathecting at 1:02 PM on July 1, 2023 [63 favorites]

What would you do if you were an only child? You don't want to abandon your dad, but it sounds like you're abandoning yourself instead. You can't set yourself on fire to keep him warm. I'm sorry. I wish I had a way to get you an outcome with no major sacrifices.
posted by Lady Li at 2:58 PM on July 1, 2023 [10 favorites]

Oh my goodness, I'm so sorry. All I have to offer are things that helped me cope when I was similarly embattled. I made an angry mix tape. I also found music that was more of an upbeat B side, on the same themes but that cheered me up instead of making me angrier. I watched the bleakest movies. Friends, like one or two, especially ones who also had weighty problems so we got each other and also helped each other -- my mode of friendship shifted from "let's go to happy hour!" to "I haven't done laundry in a month, do you want to hang out at the laundromat" and other ways of working alongside or lending concrete support to each other. Anything I could afford that gave me pleasure, I went all in. (For me it was audio mysteries via the library.)

What I see now is that if I could have somehow taken a month off and gotten a fresh infusion of energy and consulted with experts in my situation, there were real shortcuts that I couldn't see. It's incredible to look back on. I'm proud of myself but also like "damn did I ever do that the hard way." If I'd read these words at the time I would've been like "f*** you I tried that already, go away with your toxic positivity, you are wrong because I already tried everything." But, I thought certain things weren't possibilities that actually were. I have no idea if this applies to your circumstances or not. I have a lot of sympathy for you in how hard things are for you right now.
posted by slidell at 2:59 PM on July 1, 2023 [10 favorites]

Would your brothers respond to -- or at least feel more guilted by -- direct requests for help from Dad himself? And/or from Mom? That is, can your parents go to bat for you? They could ask their sons to relieve you for a few days each month, or each pay you a third of what you would all pay for a full time caregiver, or handle "indirect" roles like doing the grocery shopping, managing your Dad's health care paperwork, research facilities to find one that meets care standards, etc.

As for the anger itself, I think turning it outward physically may be important and helpful. Go to the top of a parking garage and scream? Buy a bunch of dinnerware at a thrift store and smash it (then hire someone to clean it up)? Go for a run with angry, raging music pumping in your ears?
posted by cocoagirl at 2:59 PM on July 1, 2023 [5 favorites]

Have you been in touch with the nearest chapter of the Alzheimer’s Association? It doesn’t matter that this is FTD rather than AD (from the perspective of their willingness to help).

Your anger is appropriate. This is simply very hard. I’m sorry.
posted by eirias at 3:02 PM on July 1, 2023 [1 favorite]

Response by poster: Thank you so much, everyone ❤️.

The issues with LTC (apart from the ones everyone worries about) are that 1) he’s super fit and mobile for a 90 y/o and has FTD-driven motor restlessness, which would have him dealt with as an “exit-seeker”. AFAIK that means antipsychotics, which have effects on heart rhythms. He already has heart problems (does now have a pacemaker which mitigates this somewhat but there’s a black box warning on antipsychotics for seniors with dementia). They don’t have the staff to walk with him or redirect him. (None do, staffing ratios are unreal everywhere in Ontario.) 2) Very prone to delirium after even 12 hrs in a hospital setting at least. We’re there all the time because of UTIs. 3) Per the geriatrician, many LTCs are biased against even non-aggressive FTD patients and will just not accept them. Plenty of family members I’ve talked to have experienced this as well.

Have spoken extensively with social workers and the Alzheimer’s Society - LTC and daycare are the only options. First available spot for daycare is likely to be sometime between September and Christmas, which thank the universe is a small light at the end of my tunnel.

Can’t afford any additional care (respite; PSWs to walk with him if he went to LTC) because we’ve been trying to make his settlement money stretch as far as possible.

He has no assets other than the money used so far because he acted like someone with FTD before his memory went (couldn’t be diagnosed with assessments usually used to determine capacity. Police and social workers told me “he has the right to make bad decisions” and did he/FTD ever use it.)

Legally: brothers and I have joint and several POA for care and property. Not aware of filial laws anyone would enforce and idk if I have the energy to pursue that. Wouldn’t want to go down that road because if someone wanted to be petty they could make my life even harder (eg call adult protective services or whatever).

Parents intervening: my dad can’t and my mom won’t anymore. She tried early on and it just led to explosions.

Moving to make things easier: I can’t move him because he’d lose whatever orientation he still has, and I can’t afford to move closer to him because I can’t get a mortgage without a job, and don’t want to sell the paid off condo my partner and I are living in. Transaction fees would cut into the profit and make it impossible to buy another. Couldn’t even rent because rentals are highly competitive. We are in Toronto which is on par with NYC and SF for COL.

If I could only work, I could maybe pay for additional care, or get a small mortgage to be closer. But I can’t work, at least until he has daycare. If he hates daycare I’m screwed. They do have better staffing ratios than LTC so there’s maybe a chance he’ll be engaged.
posted by cotton dress sock at 4:00 PM on July 1, 2023 [1 favorite]

You are telling yourself the LTC is impossible because his health will suffer. That is true. But you two are a system, and YOUR health is suffering right now. Imagine if the situation were reversed: he was already in LTC, the meds weren't great for him, and someone suggested you take him out and care for him full time. You couldn't! You'd have to quit your job! You'd never have respite! It would seem unworkable because it IS unworkable. What would your dad want you to choose for yourself, if he were well?
posted by Ausamor at 4:55 PM on July 1, 2023 [28 favorites]

Response by poster: Sorry absolute last comment of explanation - if he goes to an LTC, he loses his apartment (his pension is paying the rent, would go to the LTC). If that LTC doesn’t work out, like if they kick him out for FTD behaviour, that’s it, he won’t be able to find another apartment for the same cost. And idk if he would get into another LTC after being kicked out. If they keep him and it’s a terribly abusive LTC he would be stuck there because transfers are even lower priority than where he is currently. Sorry for going on and saying so much just wanted to offer a full picture in case anyone had an idea about what to do.
posted by cotton dress sock at 4:57 PM on July 1, 2023

Have you had a goals of care discussion? He is 90. Living like this must be so hard for him. How does Dad feel about his quality of life?

If Dad is mentally gone, or he’s still there but tired, you could prioritize palliative but not curative treatment, without concern about life threatening side effects. Maybe it’s ok to take drugs that increase the risk of heart problems. Maybe it’s ok to skip those antibiotics for UTI and do palliative care. If you and dad are on the same page (forget the brothers), you mind find that you are planning for a shorter period of time. It’s hard
posted by shock muppet at 4:59 PM on July 1, 2023 [5 favorites]

Response by poster: His quality of life is pretty high tbh. He takes great pleasure in being outside and enjoying the sunshine, birds, parks etc. Is very physically fit (today, the day after a hospital visit, we/he did 15k steps. He would like to do more. Any time he’s in hospital PT think he’s fantastic.) He would love to go to church or any party. Communication however esp with UTI isn’t great so people don’t get him, he doesn’t know the difference. Has a strong belief in God/reason for living. Fasted twice a week for decades for religious reasons. The fasting, walking, and imo religious belief might keep him going into his 100s…
posted by cotton dress sock at 5:19 PM on July 1, 2023 [1 favorite]

I don’t know where you live, but in the US some nursing homes have locked floors and are indicated for people who are prone to wandering. Maybe this is a thing where you live?
posted by cakelite at 6:06 PM on July 1, 2023 [2 favorites]

Also, my dad has dementia too and you have all my sympathy. It is absolutely the worst thing ever.
posted by cakelite at 6:07 PM on July 1, 2023 [2 favorites]

Best answer: It’s ok to cut your brothers off for being assholes. It’s ok to put your dad into LTC because you’re exhausted. And it’s really really ok to be angry. You have a lot to be angry for - your brothers should be paying your dad’s costs and helping you for the very hard work you’re doing. Your dad is leaving you before your eyes which is heartbreaking and difficult. You’re not getting recognised for gruelling work by almost everyone who pays lip service about how important it is - of course you’re angry and sad and exhausted.

Anger gives us fuel to do difficult things like putting your dad into LTC, refusing to take your brothers bullshit even if that means cutting them off - anger directed well is a weapon of survival.

can you live with him and rent your condo out? Or have him live with you? That’s so much time spent on transit and care, which cuts into your own time. If you combined households, you would up your income. I understand needing your own space but I would then spend the extra money on staycations at hotels and home help and stuff to make your quality of life better.

Your mom may not take care of your dad but she can step up to take care of you. If my ex’s new wife exits, I’m back on the hook for his elder care because I’m not letting my kids get stuck with it. Be honest with your mom and ask for more support. She may not know how much you need and if she can’t directly be with him because valid, divorce, can she help you - groceries, cooking, wrangling other life stuff to give you support.

Have a family meeting with your mom there and anyone your brothers see as authority figures and someone to support you. Have a list of what tasks your dad needs and the financial costs involved and discuss who is responsible for what. If they refuse to commit to any of it, well. Be loud and clear to the rest of your family and friends that your brothers are capital-A assholes and you are done with them. Social shame is a big pressure and may push some cash out of them. Otherwise, it also will make it clear to your community that you need help because your siblings aren’t covering, and it also frees up your anger at their skating by on your hard work.
posted by dorothyisunderwood at 6:43 PM on July 1, 2023 [5 favorites]

Best answer: I want to say something gently, but clearly, and with the understanding that it doesn't negate the very real care that your dad needs. You probably already know it a visceral level, but it might help to hear it from a random internet stranger who is in a similar family role: Your entire family, including you, has decided that your health, happiness and well-being are worth sacrificing. Your mom is more ok with your suffering than she is with standing up to your siblings. No one has a reason to change your role because everyone is benefitting from it.

YOU are the only person who has the incentive to change the dynamic. Doing so probably means that you'll be the bad guy in the family, at least initially, possibly forevermore. But you've already given up on relationships with your brothers anyway. If that's the case, I invite you to at least reclaim some of your own mental and emotional space as part of that fracture.

Some radical suggestions:
- Change your dad's primary & emergency contacts to your brothers' information. It sounds like they are legally able to fulfill that role given the POA. Let them field calls for a while. Put them in the position to have to make some decisions. Even if you end up being the one who eventually, literally, shows up, let yourself be sometimes unavailable as the primary decision maker.
- Tell your brothers that you are out of money. Period. You have no more money to contribute. Do not then segue into a conversation about "figuring out how finances for dad will now work." Simply say you have no more money and walk away from the conversation. When bills come, forward them to your bother(s). Give them the opportunity to grapple with their consciences about contributing financially to dad's care. Don't take that exercise off their plates.
- Give your high-earner brother's information for bill payments - name, address, etc. Even if your dad or insurance actually pay in the end, let your brother get used to being the first call, the one who has to "straighten things out" and deal with the institutions and bureaucracies.
- Seek out or manufacture reasons why you cannot care for your dad for a specific day or time. Tell your brothers that you are unavailable. Make up medical reasons, transportation problems, whatever. Claw back some hours where your mental and physical energy are for you.
- Reflect on whether you're willing to give up the role of family superhuman. (I ask this as someone who is pulled strongly toward that role.) Sometimes we implicitly agree to this role because it's proof of our love. But you can love and not sacrifice yourself. Can you consider being the "selfish" sibling? After all, you're family has already shown that they're comfortable with someone in that role. Why shouldn't it sometimes be you?
posted by cocoagirl at 6:45 PM on July 1, 2023 [76 favorites]

Best answer: Hey, you are doing amazing work. You should be recognized for the wonderful care you are giving your dad. You are absolutely justified in your anger and resentment at your brothers. I think you likely need to hear this about 1000 times or more because what you're doing is incredibly hard, incredibly undervalued, and basically impossible to do without negatively impacting yourself.

I know a little about this - I was the designated family caregiver - my mom died of dementia after 10 years of slow decline. I'm also just one of those people that takes care of everyone. Are you like me? It's highly gendered and often seems to follow patterns that were established in childhood, before we could consent.

Now, to change gears, and as one caregiver to another, I want to talk straight to you: you cannot go on like this. You cannot find a perfect solution. And you cannot control what anyone else does here - only what you do, and what you are doing needs to change. A friend of mine's sister spent a decade caring for her mother with dementia, when her mother died, she killed herself. I can't emphasize enough that society has fucked you over and you can't fix that by yourself and so you have take care of yourself at all costs and that means changing some of your mostly deeply held beliefs.

I see you in this thread giving reasons why the suggested interventions won't work. I'm sure you're right - these are all imperfect interventions. But you are also doing the thing where you are sort of reflexively arguing with every idea. I am not there so I don't know for sure but my guess is:

Get on the list for LTC. You can always say no when his name comes up. It will be very flawed. But you will visit regularly - 5 days a week maybe - and that will help staff keep appropriate. You can't provide perfect care and one of these days your 90 year old dad, no matter what good shape he is in, is very likely to have an incident that will prevent him from staying in his apartment anyway. My mom did not have FTD but she was a horrible asshole to caregivers, would through herself on the floor, bit and pinched caregivers, her last spoken word was "no"! We had to change LTC homes a couple times but we always found one. And it was a huge, huge, hugely important thing that she was under their care and not mine. That was the difference between my sanity and no sanity.

Agree with above that you need to take a week away. Period. Get some help thinking out a schedule of people to check in on him daily. Maybe that friend can talk to your sane brother and say something like, "Sock is losing her mind, Can you check on your dad Wed and Fri next week so she can have one week off?" You need to get out of there and get some air.

In my opinion it is OK for a 90 year old to be on psychiatric medication that helps his mental well being even if there is a small increased cardiac risk. You can also experiment with cannabis - I found it somewhat more helpful than anti-psychotics for may mom - although not a miracle. But big picture, it would be wise to talk to some more experts about how to think about what quality of life means - for both of you. Ask for a referral to Palliative (not the same as hospice) they are experts at helping families think this out.

With kindness and compassion I think this situation is making it hard for you to have perspective and let go of doing things perfectly. I'm so sorry this has all been thrust upon you. You are doing right by your dad, but you also must do right by yourself.
posted by latkes at 6:48 PM on July 1, 2023 [31 favorites]

Ontario has a filial responsibility law - your brothers are legally on the hook to support your dad equally to the extent they are able. He’s impoverished and in need, you can document the many many hours of support you’ve provided as in-kind support.

Go talk to a lawyer and fuck them. They don’t want to turn up and put in the time, they can write a monthly cheque that makes this possible.

Odds are the threat of a lawyer and the social shaming involved will be enough to get them to pay up. You will get backlash for airing dirty laundry but fuck those people too, they’re not showing up to look after your dad either.
posted by dorothyisunderwood at 6:50 PM on July 1, 2023 [42 favorites]

I was in a position where I was able to help a sibling who was in trouble, paranoid schizophrenia and it was ramping up rather than down, as it sometimes will as a person hits their 60s. I had the cash to go 900 miles, stay with my parents, get this sib committed against their will, and hung in long enough to know that she was forced by the state to show up weekly and show/tell that she was meds compliant. A one year commitment, and as that year came to a close sib was fool enough to say that once this year is over, hardy-har, no more compliance. I still had some money and again, 900 miles, lived with my parents, got sib committed again, made sure that sib knew that this was going to happen again and again, meds compliance or forced meds compliance. The idea did make it across.

But I was done. I have five other sibs, at that time both parents still alive, I printed out every form that needed filling out, wrote out the entire procedure steps A-Z, told the tricks that would probably be tried by the ill sib, told everyone I was done.

One brother came through one time. He really hit the jackpot, too, a great woman in the social agency really cared about the sib and our family, too.

But schizophrenia is chronic. In my siblings case it was also going deeper and deeper. And life on the streets of Phoenix AZ, for a mentally ill person in their 60s, is not a good place. Well, sib ended up on streets, was found lying in the dirt. Then the same again. I absolutely insisted to all that I was done. They kept waiting for me to get on a heroes steed.

I was every bit as angry as you are. Absolutely furious. But I was done.

Finally, after sib was found on the streets at least four more times, another sib took it up, and has kept it up, too. And has been able to do it much better than I, as she is deeply religious, as is the mentally ill sib, and they have that language to speak in, whereas I am a person known to tear bibles up -- I see the damage done by religion, and by religious people, and I mention it.

Go talk to a lawyer and fuck them. They don’t want to turn up and put in the time, they can write a monthly cheque that makes this possible.
posted by dorothyisunderwood at 8:50 PM on July 1

If I could underline and make flash the comment by dorothyisunderwood I would damn sure do so. They have no shame, no civility, no decency. I wish them ill.
posted by dancestoblue at 10:57 PM on July 1, 2023 [9 favorites]

"Can’t afford any additional care (respite; PSWs to walk with him if he went to LTC) because we’ve been trying to make his settlement money stretch as far as possible. " - this is only possible because you are not counting your own time as worth anything. What would the value be if you were paid minimum wage for your time, including the travel costs?
posted by quercus23 at 12:45 AM on July 2, 2023 [6 favorites]

No one is obliged to take care of your parents, you are not obliged, your brothers aren't obliged.
posted by PinkMoose at 12:58 AM on July 2, 2023 [5 favorites]

Best answer: Here's a brief explainer on Ontario's filial support law from a lawyer in St. Catharines.

The joint "POA for care and property" may be a complication in terms of standing to sue; and the amounts mentioned in the cases discussed are on the smaller side. But I think it's worth talking to someone about.

This was heartbreaking to read; and I really hope you arrive at a solution that's more workable than how things are all (so, at all).

What would the value be if you were paid minimum wage for your time, including the travel costs?

My Mom is dealing with a less dire situation than this with my Dad (including very bad decisions towards the end of his career probably linked to onset of dementia), and even with more resources—but not enough— this calculation would only be depressing and frustrating. If the resources aren't there, it just quantifies the misery you're stuck in.
posted by snuffleupagus at 4:51 AM on July 2, 2023 [2 favorites]

You are refusing to pay for respite care because you don't want the $ to run out. But the $ will run out eventually, and then you will end up in the exact same place. The biggest difference will be, how mentally and physically broken down will you be when you arrive there? A shorter time sharing life with his healthy, thriving daughter may be better than a longer time sharing life with a daughter who is barely holding on and will be truly wrecked by the time the settlement is done and it's time for the next phase.
posted by Ausamor at 10:04 AM on July 2, 2023 [14 favorites]

Best answer: To put it another way: your brothers are being horribly selfish. But you are your dad's proxy decision -maker, and you are making HIM horribly selfish. Every decision you make for him utterly maximizes his self interest and completely ignores your needs. Is that the type of person he was? I hope not. He is being just as selfish and cold-hearted as your brothers - or rather, you are guiding him to act that way when you put on your 'proxy healthcare decion-maker' hat. I'd like to believe that your dad, if well, would be willing to make some sacrifices to protect you and your long term financial well-being. Can you make decisions as if you have been charged to care lovingly for TWO vulnerable people? Not just him, but his daughter too? What would you decide if you had a duty of care to the both of you?
posted by Ausamor at 10:15 AM on July 2, 2023 [22 favorites]

I just want to point out to you, because it was helpful when someone pointed it out to me:

You are saying something MUST change and at the same time rejecting any possible changes.

No change is easy, but you have already established that the current status quo is unacceptable. The next thing might also not be great, but you have to allow something imperfect in order to stop breaking. Because you are breaking. He has had a long life. You should get to have some life, too.
posted by Bottlecap at 12:02 PM on July 2, 2023 [13 favorites]

If he hates daycare I’m screwed.

Wait, why would him hating daycare be worse than you hating what this setup has done to your life?

Seriously, why?

Cocoagirl's comment above is amazing and true and I really hope you take it to heart.
posted by fingersandtoes at 12:47 PM on July 2, 2023 [12 favorites]

Best answer: It's all compromise, and it's awful that it ends up so often being the responsibility of one person.

tl;dr - boundaries are essential, something has to give, and you have to have some kind of life.

Boundaries: I was the local caregiver for my mother. My brother was permanently out of the country and my sister was poverty-stricken and in a different US state, and I had little alternative, though I was just building a life for myself after a misspent youth. It was just doable if I enforced my boundaries, and she was in a life-care community. I was glad in the end that I did it and even gladder that I didn't let myself get consumed with her care. I did some important things in those ten years, including build a career, raise a kid through college, write some books, and compete in my chosen sport. She wanted me to do more. I told her I couldn't.

Something has to give: I was the caregiver for my husband. He died of cancer last fall, less than two years after his diagnosis. Our grown kid, meanwhile, had a new baby and COVID limited everyone, though they live near enough to us that they were able to lend a hand sometimes. It was a pretty tough two years, and the end was just awful. I got him through hospice. What had to give? I retired from my job. I loved it, but I was also caring for the grandkid two days a week.

There's only so much you can do: My sister has ended up being the caregiver for our father. She sucks at enforcing her boundaries, and my brother and I both warned her not to take him in (he's a life-long moocher and a narcissist, and fourteen years ago when she moved him near her, he wanted to move himself to Mexico at the time), but she was sure that she could do it. More and more, caring for him consumed her life just when she should be enjoying it. She pushed herself and pushed herself until she broke. Now she has put him in a nursing home, and Medicaid will pay for him. He's pleading with her to take him home. He's 93. She can't.

We cannot give our loved ones a perfect life or a perfect death, most of the time, without destroying our own, so we have to settle for something in between.
posted by Peach at 1:00 PM on July 2, 2023 [10 favorites]

“If he hates daycare I’m screwed.”

I can’t stop thinking about this. Because he’s an adult and he gets to hate things. And that is just a fact of life. If he hates it ¯\_(ツ)_/¯ well that sucks, but I do things I hate all the time because I am an adult and that’s part of being alive.
posted by Bottlecap at 6:54 PM on July 2, 2023 [10 favorites]

A small point, but I wanted to mention something about this:

Very prone to delirium after even 12 hrs in a hospital setting at least. We’re there all the time because of UTIs.

UTI’s often cause delirium in older people. This is a thing that doesn’t get talked about enough, but it is a known thing. If an older person suddenly starts acting like they’ve gone crazy, there’s a very high chance they have a UTI. So it’s likely not the fact of being in the hospital that’s causing the delirium; it’s the UTI that brought him there that’s causing it.
posted by MexicanYenta at 9:43 PM on July 2, 2023 [6 favorites]

OP, you seem to be expecting your single brother (and to a lesser extent everyone else in your life) to be magically transformed into people who give a shit about your wellbeing. You've been expecting this magical transformation to happen any day now for a long, long time. As each day passes with no magical transformation yet, you get angrier and angrier about how long you've been waiting. Can't they see how badly you need them to start caring about your wellbeing? What's taking them so long? Come on! Hurry up!

In your post I even see hints of your hope that maybe after your father passes away and you're on your own working for low wages and struggling through life somewhat, needing only a little bit of help (less burdensome to your siblings because your father is gone, at least), perhaps *then*, the magical transformation will finally happen and your family will start taking care of you. You have a very strong conviction that the magical transformation really will happen, even if it's very delayed.

It's a magical rescue fantasy, OP. You need to fully and honestly start accepting that there will be no magical transformation and nobody will suddenly start caring about your wellbeing. Ever. The only person who MIGHT be persuaded into caring about your wellbeing is you, yourself.

But unfortunately, persuading you to care about yourself is an uphill task right now. You're fully dedicated spending all of yourself being the perfect daughter taking perfect care of your dad until you are utterly defeated and completely broken. And then what? It's going to be just about time to start taking care of your mother, probably. Say goodbye to another 20 years of your life slogging away for her benefit. You, like your siblings, show zero respect for yourself and your needs. You seem quite set on your path and unwilling to make different choices.

I wonder if there is a reason why you're so determined that someone else must magically show up to rescue you from the ruins of your life. Even though you have ALL the capacity , the skills, the gumption, and holy mother of god you have such gumption!, to start taking care of yourself, you. will. not. do it. It seems almost a petulant, stomp-your-feet kind of stubbornness. Is it because in order to start taking care of yourself, you must first give up your magical rescue fantasy? Emotionally, that must feel unbearable for you.

So here you are at this impasse. You can't give up your magical rescue fantasy. And you will literally destroy yourself rather than lift a finger to care for yourself. Maybe you're hoping that if you suffer horribly and die a tragic and premature death, that will teach your brothers a lesson. Like you're imagining the scene when they hear of your sad demise, the ice walls around their hearts finally melt and they shed one beautiful, regretful tear for the way they neglected you? Your fantasy of their magical transformation transcends even death, that's how strong its hold is over your psyche.

I'm really sorry, OP. None of this is easy, none of this is simple, there are no glib answers that will make your life better. In order for your life to change, you have to make the unbearable choice to give up your fantasies of being rescued. There is no way out but through.

You are an incredible soul, your strength and determination and courage and integrity shines through every word of this post. It would be a blessing to the world if you can choose to honor yourself and value yourself, and stick around on this planet as your best self rather than a broken husk. I deeply, deeply wish that you will choose this.

But if you don't, we still respect your choice and admire how you are providing such impeccable care to your father. You may live in misery but you will have saved another person's life every day for many years - there is so much to honor here.
posted by MiraK at 6:36 AM on July 6, 2023 [4 favorites]

There are good answers here. Mine is about money. Get your Dad to leave you any money available. Otherwise, get him to pay for the stuff you do. Unpaid labor gets no respect. If feels bad to ask family for money for this. Too bad. You deserve to be paid and to not have your personal finances wrecked. Manage the resentment? Money actually helps, esp. later.
posted by theora55 at 9:11 AM on July 6, 2023 [2 favorites]

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