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.
Even if you hired professional caregivers, could your parents budget for that. Would your parents even allow a stranger in their house, many refuse. When my own Dad had around the clock caregivers it was costing him $20k per month, yes per month. I couldn't imagine the cost if my Mom was still alive.
I wasn't a hands-on caregiver, not in my DNA, but I was really good with logistical stuff like arranging doctor appointments, getting groceries, getting tradesmen out to my parents house for work that was needed, if they let them in the door. My folks thought I could do the repair work. Say what??? I was in my late 60's, that ship had sailed a few years ago. Even with doing logistical stuff, I had crashed and burned twice from the fatigue. And I aged quickly. I hate how I look now :P
As for your brother, he already went down that same journey with his mother-in-law. He is physically and mentally burnt-out. Thus, not fair to try to ask him to help. By the way, an elder having dementia is much more exhausting then having an elder who is immobile. One cannot reason with a person with dementia, it's like having a 3 year old in a 85 year old body.
Consider all options. There are good (and bad) in-home providers and AL/MC facilities. It may take time to find the right fit, but it will be worth it. If finances are lacking, research what services are available for those with limited funds (Medicaid, veteran's benefits, etc.) At least you can try having in-home help to keep them home as long as you can, but you should be checking out facilities as well, because as things progress, you may become overwhelmed by their needs or by circumstances you have no control over.
Also, please do not be harsh with your brother. It isn't easy care-giving and having to give up time, family and one's own desires in retirement, consider that he is also losing sleep by providing care 3 nights/week. While your brother may be stressed, it can also be the person being cared for who lashes out - it happens often to family members who are trying to help. If your brother is stressed and dad refuses to work with him, is verbally abusive, etc, it can escalate issues further.
Please do consider outside help, whether you bring them in or move dad (and possibly mom) out. Again, there are good places and not so good places. If you check them out properly, you can find a good place (do not just rely on ratings - those can be faulty, as another poster noted!) A scheduled visit can answer a lot of questions and give you some idea of how good a place is, but drop in at random hours after, to see how things work when they are not planning to show you around. Although it may seem like there are not enough care-givers, keep in mind some residents need very little help, so those who need more can get help.
I believe it was the grace of God that kept my four siblings and I
working together to maintain my parents in their home for over 15 years. It started out with hiring a caregiver to come once a week to clean as that was not being done. My father and mother in early 70’s had mobility issues, and some dementia. Then you add alcoholism and mental illness to the situation. It quickly escalated to taking over their finances, helping them through bankruptcy, redirecting their mail, getting an unlisted number, hiring more caregivers, taking turns checking in on them, and dealing with innumerable hospital stays. We had to take over their medicine also. About 7 years ago, my sister moved in for financial reasons and to be closer to family. Every Saturday we took turns covering for her so she could go dancing, (in fact she met and married her husband who moved in with them!), and of course we still had the caregivers coming a few times a week, and we were handling the finances, house repair, etc. At this point my parents were, I suppose, at Assisted Living status because they still had some ADL’s. Over the last 4 years, we all had to step it up with more professionals. Every sibling except my sister who lived with them paid for extra hours with the professional caregivers as my parents needs progressed. We also worked in shifts to be there when the professionals weren’t so that there were always two siblings present. We took turns spending the night over the years when my sister was sick, and when she went on a cruise. At this point, my 200 pound father had to be lifted in a hoyer sling into bed and into his wheelchair. My mother was heading that way also.
We would have family meetings every couple of months to discuss what new problem had occurred and what everyone was willing to do. My older brother #2 was retired and was the only one strong enough to get my father in and out of the car, and my mother was quickly moving toward needing a two-person assist to move her anywhere. My brother often mentioned that all of us working together was like a house of cards - if one of us went down, it would bring the whole system down.
Well, the house of cards did not crash, but it tottered and swayed, as my brother became more and more stressed and butted heads with my father. He had gotten to the burned out stage, and had no patience with my parents or any of us. My sister said she had had enough and was moving out and had already exhibited several episodes of mental illness. All of us were exhibiting physical and mental strain.
COMPASSION FATIGUE, look it up. It is an eye opener. I believe that is what your brother has, and what we all had when almost two years ago at our next meeting we decided to move toward a nursing facility. Keep in mind, that we had all endured a lifetime of caregiving as we had dealt with our father’s alcoholism and our mother’s bipolar disorder. We all suffer from various levels of mental health issues due to this, and I truly believe we all have compassion fatigue. I believe what saved our family, was that interspersed with the craziness while growing up, was a profound belief in God, a family talent for music, and a sense of humor. And we knew our parents loved us. Even amid all the disfunction, and violence, and police knowing the way to our house, we knew that they loved us.
It took us almost two years before we finally had them placed together in a nursing home. We and they are still getting used to this new situation. Though we realize that we still have to advocate for our parents in the nursing home, it has been a positive experience so far. I even believe they feel a bit more independence and control than what they had when we were all in charge and interacting with them in an exhausted state.
Let your brother bow out, and if you feel you can continue to take care of your father, do so. You will know when it’s time to make other plans. Keep your brother in the loop. Keep talking to each other. Pray a lot.
You can only do so much for your loved one before you need to prioritize the health of the rest of the family - many caregivers die before the care receiver due to burn out so be aware that this can happen - how much better that your parents get visits from you than going to your funeral because you of neglecting your own help
Sorry but be aware if you are in u.s. but there is $$$$ involved - I spend $2599.00 [1877.75 u.s.] per month for mom in a private room with private toilet including food, nursing, 'depends', toiletries, laundry etc - I feel sorry for you having to make some of the choices you need to do so you must be aware of all involved but it is not just dollars & cents but all the other parts of caregiving life that can suck the life out of your soul that cannot be retrieved - this means a making a choice in the balance of life - I hope I made this clear enough but I feel this can't be coveyed to all adequately
get a break from it and have some back up I say do it. I suppose there are some good facilities but no one can take care of our love ones like us.
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.
My in-laws had same situation when my husband decided he had spent his share of sleepless nights taking care of Dad and was done with it. MIL would not let hired help do anything; but your mom isn't able to do it herself, so that might work for you.
Once my FIL was placed in a good nursing home, he got way better care than they had been able to provide at home, even with Hospice coming in to help 3 times a week. His health improved, and MIL and other son even agree--now--that this is the best solution.
In reality, it took my husband walking away and MIL getting sick herself to get MIL and brother to agree to put Dad in a better place.
My advice is the same as other's. Find a good facility for him now before a crisis ends him (and/or maybe another of you caregivers) in a place you would not have chosen.
Your next question will be does your mom go with him too? - if she is capable she can choose - then you will need to look for a place for the 2 of them if she chooses that route or a place she might go later to join him but she will have to make up her mind somewhat swiftly -
Once this is decided then quickly start your interviewing process which can take some time on it's own & will be better done before the crisis [that we all here see looming on the horizon] comes - your brother may stay a bit longer knowing that there is an end in sight - have at least 2 people look at each place & make at least 1 a woman because we see a lot of things men miss
It is galling to know bro is right but he gets away from the situation & sees things with slightly fresher eyes - doing the paperwork alone takes time - this will happen 1 of 3 ways: 1 dad dies at home/hospital fairly suddenly; 2 dad has crisis & he is sent to whatever is available; 3 you start the process & do it in a gentle, kind non-rushed way - I'd pick #3 - good luck
All over this forum you will read the advice from others to set boundaries and keep them. Sounds like your brother is letting you know that he will be setting some new ones. Frankly, I don't blame him. He's entitled to a life. We are experiencing this same scenario with my MIL. Hubby & I believe MIL would thrive in Assisted Living; however, SILs want MIL to stay with them & put a $50K-$75K addition on their home AND are insisting my husband & I "take shifts" being with MIL in their home because she is lonely. Ummm, NO.
Several years ago, my sister and her husband who are retired started encouraging him to think about moving to a retirement facility. They went and looked at a few places but my Father confided in me that he wanted to stay in his home of 58 years and just did not think he could live in a place like that.
I am a nurse, and in good health and physical condition and have the downstairs space in my home for my Father. Our third sibling has mixed feelings about my Father living with me, versus a "home". He is independent and needs minimal assistance, like your Dad, it takes him a long time to dress, etc, but he does just fine with only some help with some things.
I have been staying with him overnight for about 8 weeks now, and my BIL stays on the weekends. But we know that we need to find a better solution, and fortunately, I convinced my siblings to let my Father have some say in the matter.
Again my sister took him to look at some assisted living facilities and he has rather adamantly informed us that he prefers to live with me and my husband even though it means moving about 50 miles away from the place he has resided for over 60 years.
SO, I guess that I could have simply said, I agree, that all family do not have to be in agreement, I am determined that unless my Father's health gets to a place that I cannot manage to care for him in my home, he will remain in the loving care of family and not be in a facility. I would say, follow your heart and find another way to get help on those nights that your brother decides he cannot do anymore.
Does your Father have any long term care insurance or the like that might cover paying for some help just on those occasions?
We have used that some with my Father and found it to work very well.
Good luck.
My difficulty now is that my Father would prefer that we all just keep staying with him so he can stay in his house, it will be a difficult transition in some ways for him to leave his home, but we feel that this will hopefully be a good situation for him once he adjusts to the move.
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.
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...
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.
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.
When he bows out, you'll have 3 part time people caring for 2 elders. Makes even less sense.
"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.