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Hi,
Dad is nearing the end of his life. He's totally conscious and mentally health but has almost no mobility. Mom is healthy but having memory problems-starting senile dementia. They are both 81. My brother lives with them and caretakes dad full time with my mom. I'm here during the summer and at xmas because I live and work in NC while they are in FL. My question/dilemma/worry is that my brother is totally overwhelmed because when he first moved in with them it was a symbiotic relationship. He'd fallen down on luck and they helped him while he helped them. Now the personal care my dad requires is the type that every 30 minutes he is demanding minor things, but also they have to do all his toiletting and bedridden person needs all day long. My mom insists that they can do it and won't pay for extra help. They just went on hospice but that covers only a visit 3 x per week for a bath, and a nurse once a week. I had thought they did more often, round the clock stuff but that must be when the patient is closer to end of life. I, personally, am mortified by how much they are having to do now. Each time it's more, and I'll be honest: I am not emotionally prepared to do any personal care that involves bodily fluids and stuff like putting on butt cream twice a day all over, etc... Again, my mom acts like all is well and they are handling it, but even though I'm here the least, I'm already freaked out. I didn't realize it, but dad is a very demanding, needy patient. My brother is overwhelmed but he won't set boundaries or insist on any thing with mom, I think because he feels indebted because he's had past issues where he lost his job and they let him move back in, etc.. However, I think he's paid his dues and he never gets a holiday. In the past I've suggested things, and only last year was I finally able to convince my parents to let me take him on a 3 day vacation. If my brother were a professional caretaker, he'd have legal rights to more time off every year, but I'm not sure why a) mom and dad can't see past their needs and b) he won't/can't insist. We're all adults so maybe I'm projecting what I would feel onto my brother, but I see how frustrated he and all of them are. I am 51 but I feel like a child of 14 with all of this. I think my mom may have more dementia than is obvious in the sense that she is not perceiving the global situation. Honestly, if my brother hadn't taken over and I'd had to decide, I would have said that I thought they both -mom an dad-should have moved into an assisted living situation together. They have enough money but mom and dad won't spend it. Dad's reasons are somewhat noble re: mom, since he says he's worried about after hes gone that she have enough to live on without him and I get that, but what about now? What about my brother who's given up 10 years of his life for them? I can't offer to take over bc I don't have the mental constitution for the constant routine day in and day out, with poop and pee and butt stuff and whatnot. I know my limitations. Besides I don't live here and cant quit my job. At 51 it would be tough with age discrimination to get another job, in another state. I am sorry I've presented too many issues. I guess my question is: when both parents are still fully conscious, mentally functioning adults who want one thing that a) I can't give and b) my brother is giving but it's wearing him out, what can be done? I had compassion for my dad for dying and for having been increasingly less able to move bc of polymyositis, but now I just feel like they -mom and dad-are being selfish in different ways: dad because he expects a slave level of care from his loved ones and mom because she's dragged my brother, and now trying to drag me, into her promise, I guess, of caring for dad at home with minimal professional help.

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Vic, it depends on the type of POA you have drawn up, there are some that can take effect as soon as the ink is dry. I used my POA to bank and pay bills for my mom when she was only in her 70's (she's in her 90's now) just because it was easier that way for both of us.
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Not takes, taxes, ha ha.
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Windyridge, first, thank you for your empathetic response. Well, dad is still fully in his right mind, and so is my mom except for memory issues, so POA is still fully on them. I did discuss with my dad that my brother needs to have this soon, for when he-dad- dies, and he agrees bc he sees how forgetful my mom is getting, so bills, etc, will have to be handled by my brother. But she's not like, clinically not of sound mind or anything like that. It's at extreme forgetfulness right now, but she's not acting "sick" crazy, just her normal dysfunction that I have experienced all my life. The using my money thing is to circumvent the fact that as of now, with both of them in their right mind, they say they can't afford much extra help. I've just gotten them a day ago to agree to the smidgen of help I mentioned above, but it is just a drop in the bucket. Last year, to take my brother on a three day vacation, I had to start softening them up like months ahead of time. So what I want is for my brother to have a quantity of money, however small, that is not controlled by them, so he can just use it when he needs a break without having to ask them. But yes, it will be a hardship to do without it. Honestly, if dad is with hospice, sad to say, but we may only be in this situation for about six months. I just don't want my brother to be driven nuts in the meantime. My mom relies on him way too much. It's like she can't even dial the phone without asking him to do it. But it's hard for me to know what's new, old age helplessness plus now the sad crisis of my dad's impending death, and what's her old trick of strategic intransigence, where she acts like she can't do something so she won't be expected to do it anymore, which has been her m.o. since we were kids. It's so hard to judge what's what in terms of how advanced her mental status might be. Apparently dad is the one who always did the bills, so she's not good at that. But it's not bc of dementia. She was always crap at it, I guess. Do you have to declare someone mentally ill to get POA? I mean, if my brother has to handle the bill paying after dad's gone just bc she's doing the helpless act, he might as well have power. It's weird bc my mom's the math geek and I thought she did their takes and whatnot. Guess I've been gone so long I have no idea what their dynamic has been all these years.
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Oh, BTW Vic.....

I agree with you about hands on caregiving. I'm a 62 year old man who has had to bathe and toilet my mother while waiting on in home help to be set up. I applaud those that do this intimate care but like you, I'm not up to it.

My folks can afford decent in home help and a decent care facilty when the time comes. I'm figuring on some real battles, crying and screaming, but it will happen one way or the other.

My folks got to enjoy over 20 years of retirement. Their old folks went to nursing homes, and in those days that was a rough gig. I fully intent to enjoy my retirement and not sacrifice my few remaining years cause mom had a fit about the cleaning lady coming in.
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Vic, don't use your money for care and help. Use your parents money if possible. Do you or brother have POA? Somehow you guys need to get control of the finances. You add may pass on soon and if mom is developing dementia she's going to be unable to deal with finances.

I'm in a similar situation, long distance, but no sibs nor anyone to help. My folks can't reason anymore so when critical needs have to be met I just set it up and tell mom it going to happen. My Dad has dementia and won't agree to ANYTHING.

Your brother sounds like a saint but in reality he is enabling your parents to stay in their home with minimal help and in turn wrecking his own life. I think it's time for you and him to have a come-to-Jesus meeting about the situation and force some changes.

Your roles are reversed now. Your the parent. Your folks will have to do somethings they don't like just as you did as a child. The difference is, you grew up, matured, learned life skills, but they are going the opposite direction.

There is no shame or guilt in not letting elder care destroy our lives. Senior hissy fits cannot be allowed to drive or derail sound judgement.
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Thank you so much for your supportive and helpful replies all of you! You have no idea how helpful it is to hear from people who are in my brother's shoes!

I didn't see how to reply to each individual post on here like on FB so I'll do so here.

GardenArtist, to answer this specific question, only my dad is on hospice. Mom is physically healthy but at 81 is having memory problems that are interfering with her ability to help dad take his meds on time, although he usually can remember for himself anytime he's not just had a morphine dose and been able to sleep it off. The morphine is new and makes him forgetful though.

jeannegibbs, this week I got dad to agree to get two professional caregivers in, two days a week, Tuesdays and Sundays, for the night time tasks. But this is not for all day, it's just for like one or two hours at night on those days. It's a tiny step... It takes two people to do all the moving and adjusting him in bed so one person would not have given my brother a break, since mom can't do the heavy lifting anymore. Dad's heavy (steroids and immobility due to his original polymyositis diagnosis) and totally bedridden now, and he needs so many specific things done because his skin is paper thin, and he needs to shift position with pillows everywhere, and special lotions where the skin is red and hurts, etc.. the whole thing takes at least one hour to complete, and more if he needed bathroom care as well.

I actually just decided with my brother that after I leave, which is next week (I'm lucky I'm a teacher and could come down a whole month), I am going to send him money that he can use to call for professional help himself and just (gently) inform my parents that so and so are coming to do the x things on x day and that it's paid for and arranged. This takes away the money excuse. I wish I would have done this sooner, but dad's decline has been so gradual, and this is the longest I've been able to stay for a visit, that only this time around have I truly felt what he goes through on a daily basis with no reprieve. It's like there's no more than two hours at a time that he doesn't need something, or that mom calls him for things she could/used to do herself. I still feel my mom is going to try to throw a wrench in, because any time we discussed the extra help, one thing was money but the other block my mom puts up is that she says: oh, I won't be able to sleep [if strangers are in the house-she always thinks people are going to steal things. I feel this fear is manipulative to a certain extent, even though of course I'm sure it can happen]. But they're not staying overnight anyway.

I haven't asked if my brother is getting paid and how much it is, bc I didn't want to pry, but I might need to, just to be sure he's ok. The strangest thing is that they've taken to telling us about all their investments and who's getting what after they die, but they won't use any of it now! At one point I even said, "give "my" lot to Danny" and they were like, no, that anyway it's for after mom dies. I think they are sweet to be planning to give us an inheritance, but I am so upset that they won't use some of it now. Maybe they _are_ trying to protect my brother because of what GardenArtist mentioned, that he's been out so long, (and he's 53) that it may be tough to get back into the work force? Everything you guys have said about my brother being too close to the situation, overwhelmed, depressed, etc is so true! I see that he just doesn't even want to try to have a confrontation with my parents, but he's ok if I go in there and scrap it out. I mean, he's not telling me to leave off and mind my own business, which I also realized I might be interfering too much but my gut tells me I need to try to ease things for him somehow. I don't make that much money myself, but I can at least send like 500 a month, which would buy him 20 hrs worth of help @ $25. I can probably get my younger brother into this scheme with me. He makes more $$. Again, I don't know why we didn't think of it earlier. My older brother (the caregiver) has never asked or complained, I guess. He vents his frustration with the immediate situation while I'm visiting (my parents are truly, um... difficult people), but never brought up "hey, I need help, guys" I think he thinks he didn't deserve it or something?
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FF makes a good point about doing one thing but not both. All house and yard care could be contracted out, again, assuming he has access to their funds. And she also makes a good point about the cost of care.

I recently spoke with an agency about providing home care; the minimum number of hours weekly was $20; rate was $23/hour, or $460 weekly, and $23,920 annually.
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Victoria, your post is refreshing, not because of the topic or the issues but because you're obviously a very concerned sister attempting to find solutions to a complicated problem. Typically sibling posts here are based on whining and grumbling that one person is doing all the work and getting no cooperation. They're very self focused. You're obviously not.

I think your brother is so entrenched in the caregiving that it would be difficult for him to see the dynamics or find a solution, especially given your parent's rigid position. After 10 years, it's hard to "see the forest for the trees." And he's obviously overwhelmed.

Getting parents to accept outside care is a journey, one often fraught with obstacles, resistance, refusal, lack of perspective on the parents' part and sometimes just obstinacy.

But there's another issue and that is the health of your brother. He probably has developed some health issues, including emotional ones, especially since he's overwhelmed. That can create a sense of helplessness, inability to see a positive future, despair, and depression. So the health of 3 people, not just your parents, is involved. The difficulty is getting your parents' to see this.

And giving them credit, they may be unable to comprehend the challenges of this intensive and exhausting full time caregiving. They need to understand that this is a two-way street; they need to respect him and allow him the opportunity to care for himself. Right now, they're the total recipients and he's the total giver.

So what are the options and solutions? If you're willing, you may have to step in and at first gently explain why outside help is absolutely necessary, but then be firm and put your foot down if your parents resist. Privately, with your brother only, create a list of everything he does, and what chores can be hired or contracted out. Then start contacting agencies.

He's probably trapped in a whirlpool of exhaustion and obligation, so gently guide him to the point that he realizes if he doesn't get help, he himself will need it shortly, if he hasn't already. He can't continue to care for anyone if he becomes ill himself. A lot of us can attest to that danger.

Sometimes you have to be blunt with your parents and tell them that if they don't accept help, they're contributing to your brother's own decline. I don't like to "guilt" people, but sometimes it's the only solution.

Your brother has more than paid his debt to them. Since he's been out of the work force for so long, depending on his profession, he could very well have difficulty re-entering the work force. Or he might be mentally and physically disabled and unable to do so. Is that what your parents would want for his future?

You wrote that "They just went on hospice" - are both parents on hospice, or only your father? (Perhaps I missed that?). My experience with hospice is limited but it doesn't seem that the hospice agency is providing much care. Perhaps others can opine on this - if they agree, you could try to find another hospice agency that provides more support, perhaps with suggestions from your father's medical team.

Is there any consideration to having your father moved into a hospice facility and out of the home? I suspect your mother would be opposed to that. But it would shift the burden of care from your brother.

You might also ask about respite for your brother. I've heard from others that caregivers can spend a few days in some kind of respite facility "just to get away". A cousin claimed that her hospice service offered that for her.

Does your brother have any family, close friends or others who could support you and advise him that he needs to start backing away from the caregiving obligations? If not, could you arrange for him to visit you for a few days or longer, and also arrange for a caregiving service, either in conjunction with the hospice people or just as a supplement?

Get medic alert pendants for both your parents, address what else could happen, alert local law enforcement, and try to get your brother away so he can begin to get a more healthy perspective.

I realize these aren't good suggestions; unfortunately there often aren't any in situations like this. I see kinds of dilemmas as comparable to shooting class 5 rapids without even an inner tube for protection.
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VicVictoria, your brother must be physically and emotionally exhausted. He has to tell either his Dad or his Mom [depending on who has the most common sense at this point] that he can't keep up this pace. That it is making him sick... he might not feel it at the moment but it can slam dunk him in an instance.

I really believe that some parents still view their grown children as still being much younger. I know my parents did. Heavens I was a senior citizen myself but that didn't stop my parents from wanting me to do this or that beyond my now abilities. And the guilt I use to get whenever I felt brave enough to say "no".

My parents also wouldn't part with a dollar to have outside help. Nope, never, nada. My Mom even refused a cleaning crew... my gosh, if someone offered to give me a day of household cleaning, I would be at the front door smiling big time, welcoming everyone in.

Your brother needs to try this.... tell his folks he will go get groceries but he wouldn't be able to do the yard work... which would they want him to do?... both are now out of the question. And your brother needs to stand firm. He can try that approach with other things that are being asked of him to do.

I hope your parents are paying your brother for all of his help. I know they probably think because he has his own room under their roof, in reality that room would be worth $400-$1000 on the open real estate market depending on where they live. But... and this is a big but, if he is doing caregiving and maintenance, day after day, that would cost your parents over $5k-$15k a month. An agency would charge $25-$35/hr for caregiving.
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I understand the wanting to keep a loved one at home, especially as he is dying. I was where your mother is (minus the beginning dementia) and I kept my husband home and cared for him for 10 years. He died in our bedroom. One son lived with us and was a huge help, mostly with household maintenance tasks. He was also great and patient with his dad.

So I kind of get where your mother is coming from.

BUT there were huge differences. Our son was not slave labor. He helped. He had a life and a job and outside interests.

I had other help, such as a cleaning service, a visiting nurse, and toward the end a personal care attendant. Wanting to keep one's spouse at home is very understandable. Expecting to do it without paid help is totally unrealistic, even if family is willing to pitch in.

Hospice care is awesome and wonderful. But, as you've discovered, it is not a substitute for the necessary full-time care.

What can you do? The only player in this drama that you can control is you. Absolutely and positively don't get dragged into doing more than you are comfortable doing and want to do. Save yourself first!

You can encourage your brother to be more assertive about setting boundaries, but how receptive he will be is out of your control. There are long-time family dynamics at work here.

Since Dad is now on hospice, the end is in sight. No one can say with certainly how long any individual will live, but in general someone who qualifies for hospice is not expected to live more than 6 months. Is the current situation feasible for a few more months? Would some days off help your brother get through this? If so, advocate for professional help one day a week.

Yes, your parents are being selfish. Have compassion anyway.
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