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rhondadonda Asked March 2018

How have family members come to an agreement when it is time to move a loved one to a facility?

Just a little background.....I feel like I would have to write a book to get everything in here that I want to say but if you are on this site........you all know the basics..... Maybe I really just want to vent........My sister, her husband (both are disabled and do not work outside the home) and myself (I still work) live with my parents while caregiving for both of them. My brother spends the night 3 days a week to care for dad during the night. My sister and BIL have him the other nights and during the day while I am at work. Our brother has made it pretty clear that he really doesn't want to be there helping to take care of them and thinks we are doing dad a disservice by having him at home instead of a facility. He made the comment that dad would have been better off if he would have died on the table while having the surgery that 4 doctors said they would not advice having. We are afraid that he will stop helping at some point and it feels as though it may be soon. He recently retired and told us he is NOT spending his retirement taking care of mom and dad. Dad is immobile a lot of times (due to the dementia and other physical problems, thus the surgery that is needed but not advised), we use a lift when his legs are not working well but try to have him walk as much as his legs will allow so he does not lose what little he has. Our brother cared for his MIL with dementia in his home but she was not immobile and did not have near the amount of issues that dad has. It feels as though he thinks he knows it all because he cared for his MIL but the issues are not anywhere close to being the same. Dad can not do most things for himself and my brother gets very frustrated and in a hurry with dad which only makes dad react in a bad way and in turn....my brother........we have been woke in the middle of the night a few times because they are having a screaming match that we have had to step in and stop because dad cussed at him or whatever happened this time and he is not going to let his dad treat him that way. Our mom was recently diagnosed with UIP for which there is no cure. She is on oxygen 24/7 and gets out of breath just talking or eating let alone anything that takes any amount of energy. She is feeling overwhelmed and guilty because she can't help take care of dad or with the house or much of anything. Our brother has been in her ear when we are not around and she is now talking about it may be time to put him in a facility. Mom and dad are both depressed and I'm sure they think often of end of life stuff now. I try to think of how I would feel....they have been married 67 years........I can only imagine how they feel knowing they are coming to the close of their lives. How have people that have had a difference in opinion on if a loved one should be put in a facility or left in their home come to an agreement? My other siblings and I believe at this point we are able to care for him as well as a facility if not better. They just don't have the number of people required to care for a person they same way that family can care for them. No fault of their own.......it seems to be the way of our society.

blannie Mar 2018
The other part of the equation is what is it costing each of you in terms of your own health and happiness to keep your parents in their home? Is that fair to you? Why should your parents' needs trump your own needs? I was 67 when my mom passed away and taking care of her for 15 years and my dad for 9 just about killed me. My mom's mom died when my mom was 52. Our elders are living much, much longer and creating all kinds of new family dynamics as a result.

We don't always get what we want...as the Rolling Stones sang. We sometimes get what we need. Your parents need dedicated helpers (and by dedicated, I mean people for whom that is their only job) and three shifts of helpers. You are admirable in trying to care for two elderly people who clearly need more care than you can comfortably give. Just don't let that care take your whole family down. I doubt your parents when they were young and healthy, would want that for their children.

BarbBrooklyn Mar 2018
I don't understand why you think that 4 part time people can care for two disabled elders. It doesn't add up. I agree with your brother.

When he bows out, you'll have 3 part time people caring for 2 elders. Makes even less sense.

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jeannegibbs Mar 2018
Who has healthcare POA? That is who can make the decision. The family doesn't have to agree.

"My other siblings and I believe at this point we are able to care for him as well as a facility." Is that without your recently retired brother? Because you cannot make decisions for him, no matter who has POA. Count him out. That handwriting is on the wall.

Your mother, his wife, is now talking about it may be time to put him in a facility. Why can't you respect that? If she has healthcare POA, then it is her decision.

You think a facility does not have the number of people required to care for a person they same way that family can care for them. You know what? Neither do you, when Brother bows out.

Grammyteacher Mar 2018
The way I see it is that those who are willing and able can make the choice for themselves, but not for others and can't expect, require, or guilt those who are not willing and able.

My sister took more care of our mom very early on, I was working and traveling to help with a daughter's family out of state a lot at that time. I did as much as I could. After my daughter's family moved back in state, I was able to help more. As my mom progressed, my sister was less able to deal with the physical and behavioral effects and I took over more of the care. I now care for her 24/7. Through all of this out brother, who drives a big rig across country, had done no helping... And that is okay. He doesn't even come visit or call very often...I wish he did, but this is hope he deals with the loss of our mom as she used to be. We each have different capabilities. We need to be understanding of those.

I think if it is too much for your mom and one brother, for whatever reason, they should be able to opt out. If the rest of you can make it work, then you can keep him home. If not, find a nice care facility and you can still spend as much time as you have available with him.

Countrymouse Mar 2018
Wow. Your family is impressive.

The 3 siblings and an in-law having got this far working as a team and sharing the care pretty much fairly, I mean. That is some achievement, and you are a model of considerate co-operation.

And it already isn't working.

Your mother feels bad that she can't do more to help.

Your father is sometimes combative, and that usually happens because the person is uncomfortable, and that usually happens because there are not enough physical hands moving him.

When did you last have a proper break?

It isn't disproportionate because there are two of them and they are always at home, but your sister and BIL are contributing more hours than anyone else.

This really isn't ideal for anyone, is it? And it most certainly isn't for want of effort, goodwill and filial dedication.

And it will get worse.

Your brother is right. Moving your father into a facility where his physical needs are met by *teams* of *trained* professionals will improve the situation for your father, for your mother, for your sister and her husband, for you; and your brother has already given you fair notice. He's out of there come what may.

To repeat, he is right.

arianne777 Mar 2018
I agree with everyone who advises you to move your father into a facility. If you don't, it is likely that he may start falling, creating an emergency decision. That is what happened with my husband. After our hospice team convinced me to move him to a facility, he fell in the facility. They were able to offer options for what to do about it.

lynina2 Mar 2018
If your brother already did this for MIL, he is further into this chapter than you are. It sounds as if he is burning out or as he ages, realizes his limitations. Please don't judge him. He has been doing really great for several years now. How about a independent assessment? Elder services can send a nurse to assess your dad and give you a picture of his needs and elder services can tie you into whatever help he qualifies for, sometimes at a pro-rated cost. As I don't know your parent's income, you could also try a respite week. Place dad in a nursing home for respite services to see what your lives are like just caring for mom. It may be quite eye-opening. If you decide to place dad in a nursing home, remember, you can be as involved in his care as you want. Then, he gets their expertise (including nursing hours and bedside primary care doctor visits. Lastly, you must consider your mom's health and well-being. Ask yourself, will mom benefit if dad goes into facility. You have done a marvelous job to this point. Now it is time to look at the situation from as many different angles as possible to gain the best perspective.

faeriefiles Mar 2018
I see a lot of good answers here. Your desire to provide care and the way you have all adjusted your life to do so is something very special.
The rest is my opinion based on caregiving experience...
No one has an obligation to care for another family member just because they are family. Some family members are not suited to be caregivers no matter how much they love the one needing care.
As you have seen forcing or guilting someone into care-giving when it is not something they choose to do is not a good thing. If your brother doesn't wish to help anymore maybe you should consider letting him go his own way with love and best wishes?
In my experience "forced caring" for someone out of obligation, guilt etc usually leads to less than desirable care being given. Your brother is entitled to his freedom from care-giving roll and you are entitled to choose the caregiving roll for yourself but only for yourself.
What should really matter most is that the person being cared for are given proper care in a peaceful environment. When you cease to be able to provide that care it's a good time to look into other options. If your brother is seeing a lack of quality care happening maybe step back, ask him for specific things he thinks could be better and really listen to his answers. Sometimes we get so close and are so emotionally invested that another outlook is helpful.

Ema325 Mar 2018
I know how frustrating it can feel when seemingly perfectly able siblings want to jump ship on caregiving. My mom has two sisters, one used to be primary caregiver for my grandma while my mom would send funds and visit as often as possible. The third sister will barely come visit. My aunt developed cancer and lost her battle after only 6 months, and after that, mybother aunt still did not step up. Nor did any of my 5 other cousins. My grandma could have stayed in her home, we hire and pay for some respite, and my cousins and aunt fill in the other times while we still fly back and forth frequently to provide more respite. But they all washed their hands. Heartbroken, we had to move my grandma across country to live in our house, where my mom and I figured us and my two sisters had more heart and would help, but then both my sisters completely washed their hands. They feel exactly how your brother does. They are too burdened even by just a couple hours a week. Now it’s all falling on my mom and myself, but I can’t keep putting in 80+ hours a week.
Sorry to rant on, but I just really understand the frustration of disagreement on the best placement and that feeling of family we expect to be good helpers simply bucking the whole thing. As someone said, eventually you will not have enough hands, especially if your brother no longer wants to help. And I also agree you cannot force/expect anyone to help. Have you considered hiring some in home care a few hours a week? We started doing that and it does help relieve stress and pressure. But eventually if you run out of help, a care home really might be better option. I know we’re at that point...

Sunnygirl1 Mar 2018
It doesn't sound like it's working out. And if your mother is competent, she can decide where they are going to live. If they are unhappy and depressed, why not explore a better way? Relying on two disabled people (your sister and her husband) to care for another disabled person and a senior seems odd to me. If you're disabled, you would do well just taking care of yourself. I wouldn't expect them to be caretakers for a senior and another with dementia. I might read a lot, gather information and get more realistic on what is feasible.

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