A little background information about my situation…four years ago it became clear that my in-laws could no longer care for themselves. MIL had advanced dementia and FIL was showing signs too. He was also becoming increasingly frail physically and having repeated UTIs. After one particularly nasty one which landed him in hospital for a week, we finally convinced him to move (they were living two hours away at the time). He absolutely refused to consider AL so we found a senior condo complex about 20 minutes away from us. It is a very nice place with a la carte services (nurse on site, etc.), as well as some included, such as light housekeeping. I quit my job and was over there usually 4-5 times per week, helping with cooking, cleaning, appointments (FIL has a LOT of them), laundry…the regular stuff.
After about two years of this, MILs dementia progressed to the point where she was becoming violent when sundowning. We begged FIL to let us place her in memory care but he refused. Finally, staff at the condo intervened and insisted that neither he nor she were safe with her there. They told us that they would have to get social services involved if we did not place her. This was enough to finally get FIL to relent. She went into a nice home but unfortunately fell after a few months there and broke her hip. She passed away about a year ago.
While I was caring for them, I was also taking courses for a career change and working part time. I also burned out. Shortly after MIL passed, my husband quit his job and started his own business. The main reason was so that he could be more available to help with his dad (his previous job required 3 hours of commuting per day, minimum).
My MIL had mental health issues before the dementia, but for the most part we got along. It was not fun taking care of her, but doable. FIL, unfortunately, is a different story. I know the word “narcissist” gets thrown around a lot lately, but I really think that if you look it up in the dictionary, you will find a picture of him. He is horribly racist, sexist, and mean. The last time he was hospitalized for a UTI and my husband went to pick up some things from his condo, they called me asking when he’d be back because of how nasty FIL was being to the nurses. He has been telling my husband that he is worthless for his entire life. If my husband backs away from him, he will sob and say he is sorry, then start the whole cycle again.
At this point, he has become so frail that it is difficult for him to walk. If one of us is over there, he will call within an hour of our leaving to demand that we come back. Sometimes because he is afraid of falling, other times because he wants a glass of water.
He is completely dependent on us. He really can’t do anything for himself any more. His dementia, however, is at a stage where he can usually “showtime” and seem lucid around doctors, etc. Around us, he often seems lucid as well, but other times he says that he’s trapped in a foreign country and can’t find his passport.
Here’s the thing…his doctor states that he has the right to make his own decisions about how to live his life since he is not yet incompetent. I do understand that. However, I don’t understand why he has the right to decide how we live OUR lives. He has completely consumed us and it will only get worse. He does not care what this is doing to us. He states that it is our duty to care for him, even though he never took part in caring for his parents. He will never agree to go into nursing care, which the nurse at his condo agrees is where he should be. Living with us is out of the question, even though that is now what he states that he wants. I do not like this man and if he moves in here, I know he will never leave and he will destroy my marriage. Most importantly, I also have a ten year old son who deserves to have a childhood.
I suppose my question is this: why do the rights of the caregiver matter so little? I believe that elders should be treated with respect, certainly, but not at the expense of others. I think that you get one life: your own. No-one has the right to lay claim on the lives of others, parent or not. Thanks for letting me vent.

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He runs your life because you let him. And if he is competent he gets to decide how he lives. Next time he needs a trip to the ER you might want to inform the doctors of his living situation and tell them it is unsafe for him to go home and that you are unable to care for him. They will figure out a placement for him.
Helpful Answer (27)

Molly, good vent! FIL, you are right, will only get worse. It will become more difficult as he progresses in his disease. He can still use a phone. So, he is not that far along yet. It is your and hubby responsibility to establish firm boundaries. Stop catering to fil. Do not answer the phone each time he calls. What about getting him a caregiver to spend a few hours with him a few times a week. Would that be possible?

FIL is running your life, correct, but you need to stop letting him.
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You and your husband are giving FIL the right to control your lives. You've handed it over to him. There are no boundaries. You've given him an inch and he's taking a mile on a regular basis. You can't depend upon his behavior to change so you and your husband have to change your own behavior.
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Molly; back to your original question "why do the rights of caregivers matter so little?"

Elders are considered a vulnerable population and thus their rights are protected from governmental over-reaching. Caregivers are in theory able-bodied adults with the ability to protect themselves.

YOU have the right to say "no" to FIL, as does your husband. It's on the FOG that is keeping him from doing that.

You have no legal obligation to provide care for him. If any social worker tries to tell you that, gently laugh and tell her to find that in government regs. It's not there.

The obligation exists in our heads, not in law. So, we get to choose how much we do. If what is being asked of you is unreasonable and costs you too much in terms of mental health, family time, work time and money, then you say "no, can't do that dad".

And mean it.
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Molly 72

When I was a child I had a similar situation with my Mother. She would often lie to my aunts and uncles about how bad I was. So, of course I grew up believing I was stupid and a bad person. I felt everyone felt that way about me. My stepfather was a pedefile (sp?). She would create situations to prove that I was a bad girl. One example was on Christmas Eve. My Aunt and Uncle on my birth fathers' side were coming to visit and we were to exchange gifts. She wanted me to come at a time that my children were involved in a neighborhood activity. I explained that the children would be disappointed if they couldn't attend - they were looking forward to it. When we did arrive at my mothers' home everyone was upset with me because I was so late and they had to wait to eat because of me. My mother never mentioned having dinner to me. She had created another situation where I was the "bad girl" again. This is how I grew up. After I matured and was in therapy (with my husband) to try and save my marriage I continued to see the therapist for myself. It was the best thing I ever did!! She did not suggest what I did but helped me come to terms with my situation. I decided to stop seeing or talking to my mother. There was no argument - I just quit taking her phone calls or visiting her. I discussed it with no one but my therapist. I knew things would never change and I couldn't handle emotionally the dirty tricks she would play on me. So I stopped subjecting myself to it. Of course the family thinks I am the "bad" person. I continued relationship with my grandparents and aunts and uncles. My sister felt sorry for my Mother. It was the only way I could cope with life as it was. I raised three great boys and created the family I wished I had grown up with. I am so proud of them and my grandchildren. They all take good care of me in my old age. So I created the life I wanted to live and am a happy woman. Also when I decided to break off relations with my mother I had more confidence in myself and found other people thought I was a smart person. I began to "start things". I organized an Alumni Club for the graduates of my school. I refused the President job and volunteered to be the Treasurer. When my sons played high school football - I organized a Football Moms club. Again I refused to be President but I was the organizer. My oldest son will be 57 this year and the organization is still active.
After my children graduated from college - I started my own business. I was afraid at first so I took every job that came my way - in fact I was way more successful then I ever imagined. I retired at 65 with enough savings to take care of myself. I am a happy woman!
Get some help for yourself. You cannot change anyone else but you can change how to cope with life's problems.

Hang in There!!
Rose Petal
Helpful Answer (10)

"I suppose my question is this: why do the rights of the caregiver matter so little?" I often wonder this, too. And I'd add "and health." 40% of caregivers of elders with dementia die before their charges. Society expects family (usually women) to step up and take care of the elders, even though the elders live longer, sicker lives. We need a "caregiver liberation (lib)" movement!

Lkdrymom has the answer above for you. Who is bringing him home from the hospital? Your husband, right? And he tells the medical professionals that he is the caregiver. This needs to stop, and what is suggested above needs to be done. But will your husband ever get on board with this plan? I see a crisis point coming to your marriage when FIL can no longer live alone, and then your H might agree with FIL that he needs to move in with your family?
Helpful Answer (9)

Molly, a few of your comments really stand out in terms of the existing situation and possible solutions:

"If my husband backs away from him, he will sob and say he is sorry, then start the whole cycle again." Controller, manipulator, conniver, that FIL is (thinking in Yoda speak this morning).

"The real issue is getting my husband to step back. I can’t force him. And when you have lived under the thumb of a tyrant for so long, it’s difficult to wriggle your way out. Especially at middle age."

'The h**lfire he will rain upon my husband will be epic. My husband is terrified and filled with guilt." Ask yourself and your husband why he will feel guilty; he's gone out of his way and made workstyle changes to help FIL. He's trying to find a safe place for him, and that's the important issue.

He could legitimately feel guilty if he abandoned FIL, but he hasn't. He should feel PROUD that he's been so supportive despite lack of appreciation.

Let's face it - FIL is NOT going to change; only you and your husband can change, to protect yourselves, your marriage and your son.

As you realize, your husband is really the key to the situation, but the long-term domination will be difficult for him to challenge, especially since FIL is now so dependent and in need of help more than ever.

However, as you also realize, you and your husband don't need to be that help; it's available elsewhere.

I think the first steps are those you're already taking, but also think of ways you can support your husband even more so he isn't guilted into continuing the subservient allegiance to his father.

I personally haven't had much respect for the psychological profession, although others in my family have, but perhaps some counseling could help reinforce the fact that your husband has been subordinated by his father, that he needs to recognize his own worth (and that's a major issue), and understand that he has his own life to consider first.

If he has a major stroke or heart attack, he won't be able to care for his father. And if that happens, he also won't be able to care for his family, including your young son. That might be the issue on which I'd focus.

Sometimes these caregiving situations come down to that - between the "devil and the deep blue sea". It's unfortunate, and I think it can destroy a person's self respect, and complicate an already existing low self esteem created by a dominating parent.

As to your initial comment on caregivers' rights, sometimes I see this as kind of the battle the colonists, women and minorities have fought (and unfortunately are still fighting) over the centuries for equal rights.

Unfortunately this generation is I think in the vanguard of addressing and trying to get recognition for caregivers' rights. (Maybe we should start a campaign for a constitutional amendment?) Too often we're just expected to be Supermen and Superwomen, leaping over dementia, frailty and many other obstacles, and still maintain our own lives.

But the first step is to respect ourselves and demand that our own rights be respected, and unfortunately, that's usually with the people with whom we're the closest, and then the overall medical community.

I think you're on the right path though; get as much support from governmental resources as you can (FIL can't manipulate them), help your husband work through his own subordination issues, and as soon as you're both ready, take the plunge and get FIL in a place where he can be controlled.

(It doesn't hurt to take a few "sick days" along this route to help FIL acclimate to the fact that he's not going to be able to dominate your lives forever.)
Helpful Answer (9)

I am surprised the Senor facility hadn't spoken up. Yes he is competent but he is a liability to them. Next time he is hospitalized tell them he can't go back to his apt. Its not an AL. That at thid point he can no longer care for himself and you are no longer capable. Also realize that UTIs are very dangerous for men and being catherized doesn't help. UTIs do a job on the mind. Maybe get Office of Aging involved. They have the authority to move him.
Helpful Answer (8)

A similar story happened to my one of my relatives...
He was on a rant and became paranoid (psych hold, possible harm to self or to others). 911 was called and he was taken to hospital.
We told social worker he was not allowed back to his IL apartment (true--they said he was out of control and couldn't handle him anymore).
The family worked and had no room in the home, he was then homeless. The hospital social worker HAD to help place him elsewhere. They gave us a list. They tried to intimidate us, yet we didn't back down.
We also worked with "A Place for Mom" (to narrow down the list), and drove around for 3-4 days looking at the facilities for the best fit. It was quick and really hard, yet it worked out great in the end.
Stay strong, stand firm, and make a change.
Helpful Answer (8)

It'll be very important that you and your husband are on the same page going forward. Someone once wrote on this forum that our parents know how to push our FOG button because they installed the button. Your husband will have a harder time detaching because he's the one with the history and baggage.

It's rough to have to find alternate care facilities on short notice before discharge. You could have some background work done before the next hospital stay. Research nearby facilities with the appropriate level of care.

Stay on this forum -- there's a wealth of information about how to deal with difficult parents.
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