Caregiver guilt. I want to keep FIL at home and help take care of him, but brother wants to move him to a facility. What should I do?

I think all too often when there are multiple siblings - one sibling will take on care "for everyone". Meaning - that they assume that if they are willing and able to care for mom/dad that ALL of the siblings share that ability and desire.

You can only make choices for yourself. You and your DH decided to take care of your FIL. You made an informed decision for yourselves. And that's perfectly fine if that is what you want to do.

But what you cannot do is make the same decision for siblings or other in-laws. You may feel it takes a village (and it does) but you cannot assume that family members are willing and able to BE that village. You cannot make an executive decision to take on caregiving for all family members.

What I don't see is how YOUR DH feels. You say that BIL feels that he should be placed in a facility. You say that you feel that is not the right idea. Where does your DH stand. You say that he feels the same regarding BIL not being helpful, but how does he feel about placing his father?

My perspective is from your shoes - but the other side of the fence. My SIL and her DH moved in with my FIL (out of their own need for a roof over their heads) and as a result they were default caregivers when he began to need it - because they lived in his home - rent free, and he paid all of their bills. DH and I lived an hour away, both still worked full time, and also had other family members who needed occasional care on my side.

The more care he needed, the more it was expected that we would begin to take on more responsibility. We could only do so much. We did all that we could. But he was still needing more and more care. It was having an impact on mine and DH's relationship. It was impeding me from helping my own side of the family. His care consumed us. But he still needed more. My phone blew up day and night with SIL's complaints about not being able to keep going the way we were. But no one wanted to broach the idea of a SNF. Because FIL was adamant that he wanted to die in his home.

We began a cycle of fall - hospital - rehab - home, over and over. I sat my DH down and told him I was done. As long as we were the solution he would never consider anything else. And SIL and her DH were reticent to force the issue because he was their financial support. DH said he understood. And then I told SIL. She lost it on me, not in a mean way - just that she didn't think she could keep doing it - but she didn't know how to get out of it.

Ironically - with the knowledge that I was stepping back, and that DH would be able to do less and less due to caregiver injuries (spinal surgery for one), suddenly - SNF was on the table in a very real way.

If you want to care for your FIL, you have every right to make that choice - provided your DH is onboard. I don't suggest you make that decision without him.

But I would take BIL at his word - he doesn't want to participate - you will be on your own. And HE has every right to make that decision.

Too many people believe that the only way you can care for someone is hands on. That's a misconception. There are lots of ways to care for someone, that don't involve you doing it personally.

While your feelings are yours and you have a right to them, being angry with your BIL accomplishes nothing.

You can not force someone else to be a hands on caregiver . It’s not something everyone is capable or willing to do .

It is up to you and your husband whether you continue to go on like you are . It is not your brother in law keeping you in this role .

Your brother in law is suggesting an option to you by suggesting placing his Dad in “ a home “. He is suggesting this because you are burned out .

Only you and your husband can change the situation you are in . You can not expect other’s to align with what you think is right to do and help you.

You do not have to accept the role you are in . You could place your father in law . Assisted living ( a home ) is a village with nurses, nurses aides , cook, housekeeping , maintenance , activities . Two caregivers at home is not a village. Or your other option is to have hired help come to the home to give you breaks .

I think you need to stop blaming your brother in law for the situation . You said it wasn’t helpful when he did come . So why keep thinking he should come help ?

The brother in law coming obviously isn’t the solution . At least he’s suggesting placement as a way to help you, since you are burned out . Many caregivers get grief ( from non caregiver siblings ) over placing a parent in assisted living when the caregiver is burned out and say they can not do this role any longer . Consider yourself lucky . Your brother in law has done nothing wrong .

If you keep him at home, what will you do when:
He starts peeing in the dishwasher, around but not in the toilet, on the carpet, in your shoe, and on the kitchen table top? My LO has done all of these things. What will you do when you take him out in the car to appointments, for a ride or to visit family, and he pulls the handle and opens the car door while it’s in motion? What will you do when he refuses to use a public bathroom but really has to go and does? All over the place? What will you do when he takes off from your house and ends up miles from your house but you can’t find him when you realize he’s missing?

All these things and more are what you can expect. They are common, not uncommon, with his condition. Place him before they happen.

I have the same going on here - My only sibling (older brother) says to put dad in a home and doesn't help other than a few quick visits here and there. So, I accept that. Me, myself, and I made the choice to come care for Dad. So, I look at it as exactly that - my choice not anyone else's. So I don't expect him to help, nor am I angry at him or resentful. It is what it is. I don't blame him for his choice. We all have choices. So do you guys. I see anger as wasted energy - and I need all I can spare at this point in my life! My Best Wishes to you all.

Momoftwins, Yes it takes a village, and yeah sorry, after all Ive learned here , yes you are a bit wrong.

Some people have it in them to do caregiving some just don't, and can't do it.

3 years ago when my sister disappeared out of are little caregiving circles. I was mad, really annoyed. Now I see , she did what was best for her. It's just what she had to do. I could see the stress in her, and was trying to pick up my part to help , but she just left.

I'm thinking at the time I was actually more jealous than mad at her. Jealous because she had it in her and I didn't.

Caregiveing is rough work, physically and mentally, have you considered a facility for dad?

It may be time for your family to let go of the caregiveing duties too??


I'm wondering , how old everyone is in this, your fil, and your family. Do you have young kids?

If you wish to/decide to/feel you must take on this care, then understand that you will be doing it alone.
I would be where your brother is, that is to say many miles away as I could get.

You have the perfect right to make your own choices for your own life. I feel bad for your hubby if your choice is to sacrifice your own life on your Dad's burning funeral pyre, because often this is a slow burn, that robs you and your marriage of some of the happiest and most carefree years, those years when you are newly retired, strong enough to do wonderful things, and have raised your children and are free. I was taught by my own parents that this caring for THEM, after they have already HAD their lives, would be something that would break their hearts.

I honor your own beliefs and decisions and determination to make your own choice in this matter. But I caution you against thinking you can make decisions for others. You cannot. You SHOULD not. So take that off your plate. It relieves your mind of at least ONE thing to think about and be concerned over. As I said, your brother's decision would be my own. I was an RN and I loved it. It did, however, teach me that it was only doable if I kept it to three shifts a week, 12 sick days, 12 holidays and 5 weeks vacation. I could not otherwise have remained strong enough to do the care, and that was with an entire team at my elbow.

I wish you the very best.

I think it’s admirable that you are trying to honor what your FIL has always said he wants - to stay at home until he dies. However as dementia progresses, those with the disease no longer have the capacity to see or care about how their wishes affect those around them.

If FIL was his pre-cognitive declining self, do you think he would want to watch what you are going through and how it is affecting your life with your husband, and your relationship with his brother?
Do you think he would enjoy seeing his daughter-in-law struggling and burning out trying to care for him in his home and what you’ve had to give up to do so?

To put it more frankly, do you think your FIL would, if his brain were healthy, want you showering him, changing his adult diapers, clipping his toenails, picking him up when he falls, and on, and on, and on, just so he can die at home? Granted, none of these things may be happening at this moment but they very likely will.

It isn't his fault he is losing his ability too see beyond his own self. It isn’t yours either. It just IS, and it’s incredibly sad.

When I finally placed my mom in assisted living I saw that I had been projecting onto her my own feelings about her leaving her beautiful home. She actually had very little connection to it in her Alzheimer's world and it was a daily worry for her about the care of her home, even though others were taking care of everything just fine. I was never her sole caregiver, but it was still a daily job for me on top of my full time teaching. She forgot about her home within months of being in her new home at the facility. I still visited every day and was her daughter again instead of her caregiver. Even with placement there will still be very much to do for your FIL, but you'll be able to do your own things without worry. Maybe you aren't at the point yet to make that decision to place him, but just don't feel guilty if and when you do.

If, as you say, it takes a village to care for a sick loved one, you're making a case TO place FIL in a Memory Care Assisted Living facility! You also put your question under the Burnout category, so are you just trying to assuage your guilt by writing to us? Placing a loved one in managed care should not cause "guilt" but knowledge that you can no longer manage 24/7 care of this magnitude. That your life matters too. Guilt is a self imposed emotion that suggests you're doing something wrong for assigning care TO a village instead of a burned out couple.

Good luck to you.

My Mom was the best. But I am not a Caregiver. I like order and everything falling in line. Doesn't happen with Dementia. Its too unpredictable. After 20 months taking care of Mom an oppotunity cam up and I took it. Respite care turned into her staying in the AL because she adjusted so well. When the money ran out, a nice LTC.

At 75 I will tell you that you should never expect something out of someone else. You take what they are willing to give, but you will be much happier if you don't expect. Realize too, that because you look at something a certain way, othersvmay not. So if you are going to continue to take care of Dad, then its all on you. I hope you have his POA so you can make decisions for him.