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?

So many do not have the financial means to place their elders in a Care Facility.
It's nice that at least that's an option . Should your FIL's condition worsen and he becomes more totally dependent on you , which isn't "pretty", and can take a toll on your own health, you may change your mind about the "offer: your husband & BIL have made. Perhaps , if he lived not too far away-you could visit him often and it may be a lot nicer, spending quality time with him over dining, or activities , etc, than spending whats' supposed to be Your time too now , changing diapers, managing the stubbornness, anger issues, & /or allowing him some "independence: while keeping him confined., and always cleaning up after him.
People live longer now , and many in poor condition, compared to when earlier generations cared for the elderly within their own home. When their organs don't fail, their mind will, which becomes a strain on you and everyone else.
If you can let your BIL know , you appreciate the thought , (& offer?) you may want to consider it, but When you are ready .

I have been taking care of my Mother for 5 years in her home. She no longer knows this is her home. She often thinks we are on a cruise ship, church, or just not home. What he wants is only at this point in time, soon he won’t realize he is at home.

What about your parents, if they need you and you are committed to your FIL, what will you do then?

Burnout is real, I have read about burnout on this forum for several years and acknowledge it happens. My Mother is not difficult, sleeps alot, but it is happening to me now and I do not have anywhere the issues many others have to deal with.

Best of luck to you as you navigate this time.

Let's face it, even if BIL could give a week or two of respite, what good will that really do? 2 weeks out of 52. No matter what he can do, it will never be enough. So many times we have had posters say "if my sister would just take over X ...." we can keep them at home forever. Except X morphs into Y, Z and the rest of the alphabet.

Good Afternoon,

With the elderly, as the changes occur, more changes will be needed in who provides healthcare. But, in all honesty, if your husband's family does not want to pitch in and help, believe them. Not everyone is on the same page and can agree on, there's been a change in dad...this is what "I" think we should do.

Basically what they are saying is they want to put dad in a facility and you are saying, let's care for him at home. But, if they are not offering you a schedule of some sort to help out then they are trying to say, you own it.

I went through this in my family. I had the most wonderful childhood and two great parents. But baby sister informed me early in life, you are taking care of Mom. I never thought much about it until the day came. One brother and his wife want to travel and can't be bothered (unless they were on the receiving end) and the other brother I moved closer to since he is dependable. The one who will bring me soup if I a sick.

We have exhausted, home care, morning respite, short-term rehab, moving from a 2nd to 1st floor luxury apartment, the camera at the door, the emergency button, you name it.

I re-located to a southern State and don't regret it. "We" live in an Independent Living apartment that has Assisted Living, Memory Care, Respite, etc. I work remotely and the docs, blood lab tech, x-ray tech all come to the apartment. The Northeast (Boston area) has some of these but you have to be rich, other surrounding States do not have enough resources to accommodate the aging population. A major change needed to be made or life would continue as it was.

When mother goes, I go, basically I have to give 60 days notice but I knew that beforehand. I was getting burnt out and tired of hearing from my neighbors in the supermarket, "your brother and his wife are in Greece right now, last month they were in Ireland: etc. You get it. My sister who never helped or seldom visited because she couldn't bare to see Mom like this, is telling people I took her mother from her and headed South.

When this is all said and done you have to still be standing. I'm old-school. My grandmother lived in our family home, an Aunt who married late in life with no children and other people along the way all lived under our roof. It was just done, people took people in. People today in the U.S. want their independence and autonomy. The previous generations did things for the greater good.

You have to accept your reality and realize yes they may/will very likely leave you with all of the work. That's your decision to accept or change the game plan as the changes are needed for the safety of your loved one and for your sanity and well-being.

I try to be as honest as possible on this site. I have been in the trenches for 13 years. So hopefully I am older and wiser.

It’s your BIL choice not to be burdened with caregiving. That’s his choice and it needs to be respected without resentment that he should be helping.

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.

Brother doesn't want to be asked to do any caregiving chores so his option to prevent that is put him in a facility. Even if you did that, you would need to drive there and do random time visiting to ensure dad is getting good care.

If dad has some money, use it to help you pay for respite or other care when you need a break and stop asking brother. If there's no money for this to be an option, you can continue to keep him at your home, but you'll be doing it on your own.

Momoftwins: Most likely your FIL requires managed care facility living where his 'village' will exist.

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.

Hi
so his brother is actually a Realist
And fully aware of the pressures of looking after someone - he knows he’s not cut out for that.
On a totally neutral stand the brother prob feels equally upset at you after voicing his views and them not then and then help
needed from him
of saying it’s right - just from a neutral stand
I to m you’re at the stage where you are feeling it’s too much - you need help
and it’s not forth coming
we all have views of looking after our own and what we feel is right or wrong but you also have a responsibility to yourself
to look after and care the yourself which I think is being compromised now.
i don’t think it’s a case of anyone being right or wrong but a case of how you can resolve it
the brother is no help so you can’t rely on that source
I think you need to sit down and think about how much you can continue doing
the answer from my seat says you’ve reached your limit and if you are not getting proper or reliable help then maybe it’s time for father to go into care and you visit
forget the guilt - it’s not justified.
You’ve done more than enough
forget brothers non existent help
do what’s right for you - your health and husbands
a new system isn’t necessarily bad?
24 hour care might be a good thing
good luck

I think the decision has to be up to the in-laws. Even though you are probably a wonderful caregiver. Your father in-law will be able to participate in activities and make friends. You both can visit all the time. Hopefully, the brother in-law will help pay.

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.

Warning: My friend, the daughter-in-law, ended up in ER due to overwhelming stress being one of the primary caregivers in her own house. Not to say her dementia mother-in-law was the main reason for the ER, but the added caregiving stress for a once-indpendent, but turned aggravated & stubborn in-law, took a toll on my friend’s physical, mental & emotional health. And then dealt with the post traumatic stress. Lucy is a dedicated, patient, fun & caring person; the MIL’s sudden dementia changes & demands became more than she could handle.

At that critical point, she & her husband found other solutions for mom. First to a week-day day-care. Still challenging when MIL came home after a day’s care, but Lucy, husband, and daughters helped out as a team. Eventually, when MIL could not even recognize her son, she was cared for by a wonderful “foster family” in their home that could take care of MIL’s needs 24/7, with medical attention. When it was her final week, she was brought back to her son’s home under hospice care and peacefully passed away with the entire family by her side.

You, your husband, and your brother-in-law (right ?, not your FIL’s brother?) want the best care for him. No you’re not wrong to feel your feelings.. but neither is your husband nor BIL. If your FIL was of sound mind, you know he wouldn’t want any of his family to suffer, or the least troubled, taking care of him. Kind gestures are welcomed, but suffering is not. If you & your husband find yourselves suffering more than enjoying life with pops at home, then it’s time to hire for help. Best wishes….💕

Your brother-in-law sees from long distance what you can't see close up. And what he sees is that this isn't the best situation for his father, his brother, and you. He is part of your village and your husband needs to listen to him. But your village is bigger than you seem to think it is. Because a facility, whether it be assisted living, nursing home, or memory care can be part of your village too. I suggest you begin to explore options in your area or, if needed, in your brother-in-law's area.

What does you FIL want to do?

Each of us is made differently in terms of our care giving philosophy and capacity. For me, I would let the brother place him in a facility.

You are taking care of him now and appear to both value that time and be “up to it.” It does take a community, even if he goes into a care facility. You cannot simply not be involved and must be his advocate. The question requires a lot of information and thought. There s no one answer. Yes, life will become more complicated for all of you in the future. Currently, though it sounds like you are happy with the situation. So, you need to gather information and be ready to make the best decisions as his illness progresses. Get an elder lawyer if you have not. Get all the paperwork signed so you and your husband can make all decisions. ALL Decisions….medical, financial, everything. Follow the lawyer’s advice. He will examine Your FIL’s insurance, finances, and be able to show you what he can afford in support/care both while at home and in a care facility. With that information you must then go and examine such facilities and home care support. They are not all equal. There is also home medical services paid for by medicare that relieve lots of trips to dr. And when the time comes, hospice can help with care. After you gather all this information, put it into a booklet, with information pages on his Dr. name and numbers, prescriptions and OTC meds, legal info, and his end of life decisions. Then put in a page with your plan for his care. For example, keep him at home, add home supports as necessary, home medical, etc. This plan is flexible. Then you send this all to the brother. Don’t ask for input or feedback, just send and tell him this is the plan, and he is welcome to come and spend a few days but more than that is disrupting to their father’s condition.

Waytomisery made a very excellent post below that your husband does not have the right to conscript you into caregiving for your father in law until your husband decides for you when you can “no longer handle it.”

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.

Try to keep him home

Worked for folks across the street from me. Sure they had to take her every time they wanted to go out. Sure it got to the point that they had to call the police when she didn't unlock the car door to let herself out, but she passed in her home.

Listen to your brother-in-law.

One key question here is what does your husband think or is he too busy trying to please everyone? This is not your father who is needing care but your husband's and his brother's father.

Considering that fil has dementia I hope you realize that his care needs will increase.

Are you wrong for feeling angry. No, your feelings are your feelings. But expecting your bil to come and care give to give you and your hub respite is probably not reasonable. That is his choice to make. He is entitled to make his own decisions on that. His suggestion to put his father in a facility for professions 24/7 care is reasonable.

Yes, it takes a village to care for loved ones, but you (and your hub) are not a village and you don't get to chose who that village is.That's one big problem with caring for fil at home. If family chooses to place him they do get to choose the village.

My sister had no intention of putting any work into caring for our mother. She simply wanted to save the $$$ for her inheritance. Be thankful that your bil sees placement as an option.

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.

There are benefits on both sides of the [age if you are doing a Pro and Con list.
You have decided that you are going to care for your FIL so you can not be "angry" at your brother in law.
You can be frustrated at the situation.
It is VERY difficult for someone to come for a visit and step completely and effectively into the role of caregiver. It takes "professional" caregivers sometimes weeks to get to know a client and what the routine is and to get the client to accept them as a trusted caregiver. (even more difficult if the person does not want a caregiver)
So a weekend or a couple of days is not going to do much to help.
If you want a break hire a caregiver (your FIL pays for the caregiver) and have the caregiver on a set routine. Like Monday, Wednesday and Friday if you can't do daily. This gives you specific days of the week that you KNOW will be free for you to do what you need or want to get done.

If you and your husband want to take a bit of time off and go on a vacation do use Respite. A week or two does wonders to reset your self!

If your FIL is a Veteran ask the VA if there are Adult Day Programs in the area that they can suggest, often the VA will cover the cost of the program (If your FIL is in the VA system.

Check with your local Senior Service Center and see if they are aware of any programs and see if he is eligible for any services.

The person who is ill here is your father in law . That is no one’s fault . It was very nice of you to care for him but you may have reached your limit . We all have our limits . That’s ok .
There should be no guilt felt in placing him in assisted living , if you ever decide to do so . You did not cause his illness or the fact that this is getting too hard to manage at home .

Start looking at facilities where dad can have his own separate life. You can decide to make "it takes a village" your mantra, but the village can be somewhere else. The facilities will have a village that is already set up with layer upon layer of help for dad. They've been doing it for years. They are professionals. They know what to expect and how to do it.

You can go visit dad anytime you want. Then you can leave. And that's the beauty of placing dad in someone else's village.

Anyway, "It takes a village" is baloney. If the village is in your home, you can be sure that you yourself are the whole village and then some.

Respite Care sounds nice, but it costs typically $500 or more per day - at least in my locale. $500 per day X 14 days = $7000.
Ouch.

What's wrong with 2 weeks respite care??

Momoftwins, welcome to the forum. I see from another posting of yours that your dad-in-law has Alzheimer's/Dementia.


Please note that 40% of family taking care of a love one who has Alzheimer's/Dementia will die leaving behind the person they were caring. Then what would your husband do with his Dad, since you are no longer there to help?

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.