Not really a question, more of a rant. But any thoughts and suggestions are appreciated!!
So FIL who was widowed a year ago April is in AL with dementia, He is miserable, refuses to socialize, thinks he doesn't belong there , refused care, yada yada. Finally is showering 1-2 times most weeks, last couple of months with or without help depending on his mood, but still does not change his pullup often enough and refuses toileting schedule.
This past month has expressed that he knows he is declining. He has been in the hospital 4 times since December with acute on top of chronic respiratory failure. This time he is also in CHF.
The man despises rehab and PT. The last time was this past April. And he did improve , but has been declining again .
Last night he said he does not want anything done , he is too tired. In my head I agreed that he is probably too weak for rehab and was thinking of palliative care in SNF.
Went to see him this morning and FIL was back to "denial" about his condition. He said the doctor said he needs to get stronger. FIL thinks that means he just needs a few more days before he goes back to AL. FIL just wants out of the hospital. He did seem better today, but I doubt he can go back to AL before going to rehab. I also think its questionable that he would do well enough to return to AL at all.
It is so exhausting for all (Including FIL), this back and forth every other month with the same chronic problems. At some point DH who is POA will have to make the call as to how much is done and when to just let FIL rest.
But when that is , is a tough decision again. It was much easier when he was doing more poorly and FIL himself saying not to do procedures etc. FIL is a DNR, which he is still adamant about.
Modern medicine keeps bringing him back from going over that edge, where we would all say for sure let the man rest. It seems so cruel to put this man through rehab again and again , just putting off the inevitable.
It gets complicated as well since FIL has some lucid moments. It would be much easier for DH to say "Stop , let him rest." if FIL was less verbal or less able to make wishes known. But his wishes are often unrealistic as he is not always aware of how ill he is. Last time FIL was very against rehab, but did it to avoid SNF. I doubt he remembers that he wasn't allowed to go back to AL if he didn't do rehab. We may be headed for the same ugly scenario , as he thinks he can go where he wants" so long as he pays the rent".
So now what? how many times does this happen until DH decides that FIL should just rest in palliative care in SNF no matter what he says? Maybe FIL won't be well enough to get back to AL, we will see.
I hear what you are saying. But I feel like nobody , DH nor the doctors are truthful to FIL about his medical problems and perhaps if they were , FIL would have different thoughts about it. Even in the rare occasion that someone is more honest with him, FIL doesn’t remember a lot that is said to him to begin with .
I feel it’s cruel . The man should be told more truthfully . Most of the time he is not lucid and thinks he’s going to get better . I’ve known this man for 40 years. He would not want this. That is the tragedy of dementia . He can’t make informed decisions because he doesn’t understand what his conditions are , yet he’s making the decisions . It feels like we are letting someone who doesn’t know better, abuse himself.
I guess I should not have worded it with DH “ decides “ ?? I think DH and the doctors should at least have more honest conversations with FIL about his options which would include “ rest”.
Why is it taboo to suggest rest ? And it is tragic that a man that can not make rational decisions has to go through a prolonged death .
He also belongs in memory care, which no one will do either . He’s going back to AL today .
Your husband is not God so therefore does not get to decide when his father can "rest" if he's still able to say he doesn't want to.
Yes, it would be much easier to say, "Stop, let him rest". Much easier for you and your husband who aren't actual caregivers to him because he lives in assisted living. You and your husband do not have to change his pull-up. You do not have to deal witht he stink or the refusals to shower or wash. The AL staff has to.
Really, if you or your husband don't want to listen to him complain or carry on, neither of you actually have to.
You say your FIL had lucid times. That he's showering once or twice a week sometimes without assistance.
So maybe he isn't ready to lay down and die because that's the most convenient for everyone.
Don't get me wrong. I totally understand why anyone would want an unpleasant, stubborn elderly person out of their life. No one wants to deal with the endless complaining and negativity. Or the asinine nonsense whether it's dementia related or not. Believe me, I get it.
If this guy can verbally express that he wants to do rehab and improve then he should get it. Whether or not he keeps up and works with them is up to him. People get kicked out of rehab if they don't make enough progress to satisfy the insurance company paying for it.
So if your FIL isn't keeping up in rehab, they'll throw him out. Maybe rehab for him will improve his quality of life a bit so it's worth a try.
Is he going to complain incessantly while he's there? Probably. Elderly people complain night and day anyway about everything. It's still worth a try though if he wants it.
Oh my God no. Please get it out of your head. That’s an awfullllll, sad story.
Yes meet you at Bingo, next week! Haha.
Meet me at Bingo !!
I’ll be there .
I keep picturing our facility for caregivers like all the permanently broken souls in the movie
“ One Flew Over the Cuckoo’s Nest “.
Super frustrating for you!!!
“They are going to need to build facilities to take care of all the broken caregivers next.”
This made me laugh. Imagine if all of us on the forum are in the same facility, and we suddenly realize we are the forum members. It’s like, “Way, is that you?? Oh my gosh, I finally meet you. How are you? How’s FIL?”
You’d be like, “Venting, oh my gosh. Can’t believe we’re both in a facility now. We were only joking about this last week!”
I’d say, “Yeah!! Gosh, we shouldn’t have joked about it.”
I tried to ignore FIL’s BS for a while , even tried to take a break from Forum to get caregiving out of my mind in general while FIL finished up in rehab.
But DH has burned out and SHUT DOWN !! Uggh . He says he’s “ HAD ENOUGH , I’m tired of this “. ( I guess we were both trying to ignore FIL ) .
So I’ve been the one bringing FIL books , Dunkin coffee ( because rehab coffee is no good), and doing his laundry . FIL is going back to AL today and thinks he’s even more INDEPENDENT .
Last night , FIL told me he wants an apartment and a car because they keep sending him to the hospital and he doesn’t want to go but he does not want hospice either.
I’m assuming this is precipitated by the fact that the executive director of his AL came to evaluate him and was going to speak to FIL about needing to be more cooperative with showers and toileting. He will of course say he will accept more help, which will not come to fruition .
I wish someone , either the facility or DH , would just PUT this man in MEMORY CARE already !!! I suggested it and DH says he doesn’t want to be the bad guy .
I do FIL laundry at his apartment in AL , yes he has his own washer dryer in his room because it used to be an IL building until they built a more luxurious IL building on campus . I once again tried to make his room smell better , but it’s impossible .
So nothing will change. FIL will refuse care more often than not and will ask to go out to dinner this weekend.
He’s killing us.
They are going to need to build facilities to take care of all the broken caregivers next.
It already was difficult getting him in and out of the car last month for his birthday and Father’s Day . DH says FIL still has so much trouble getting up from a chair in rehab . That’s been going on for months too . It will only get worse .
We are in the land of NO .
We will try to not let FIL wear us down
Good point about the need for an exit plan . We discussed that and don’t see a good one if there is a mishap while out with FIL.
It’s over a year dealing with his refusal of care. DH says he’s fed up . Too stressful . DH is also stressed over work , right now some crazy issues all at the same time . We will see if DH doesn’t let the guilt get to him . I hope not .
On one hand you both probably feel sad FIL can't go for a dinner out. (Sadness can morph into guilt)
On the other hand, a nice outing can be ruined by a toileting-gone-wrong episode. (I write with experience here).
- How low-mod-high is the probability for mishap?
- How low-mod-high is the scale of mishap?
- Low-mod-high burden-load on caregiver?
Also, always have an exit plan.
That's how I got where I am.
To the Land of No.
Haha. Yes my mother used “we’ll see “ on us and so did I on occasion with my kids.
So far DH is saying he will tell him …No. He’s too fragile. First we will try to ignore it unless he brings it up again.
DH really does not want to be out with him if something were to happen .
We are exhausted by his on again off again manipulation strategies , meanwhile he refuses care with ADL’s .
And yes the “ family cruise “. DH said that would have been terrible and he may have gotten the urge to jump overboard
🙄🙄😬😬.
My Mother used it well on us 😆😆 (knowing a flat out No got into debates). Ha! Now on occassion I have pulled that out back at her - Touche!
Way, isn't it funny how they ask for things JUST almost possible, if WE did the work. "Take me out for dinner".
Not ask for something absolutely rediculous? Not "Fly me to Paris, France for dinner in a Michelin stared resturant." That would be easy to say no.
Just on the edge of possible.. where with a little more manipulation & guilt they may get what they want..
Oh YES I remember the 'Family Cruise' idea! I'll only need a *little* help..
Thanks for your responses . We have used the homebound excuse in the past to not take him out. DH has also used , “ We’ll see, you have to get stronger delay tactics . “. DH says now he’s just going to tell him no , he’s too frail .
DH doesn’t always realize when he’s being manipulated . He thought FIL said he wants to take us to dinner for running up books etc to him in rehab . I told him he’s just wanting to go out . He pulled the same thing in the past . FIL also tried to manipulate us to take him on a “family cruise “ last year . The man never suggested doing anything with us until now , that he needs a ride from us.
This morning ……
IMO , FIL belongs in SNF . I told DH that . He said he’s “ not arguing with Dad . Let him go back to AL and rot . “ DH said he’s not taking him out anywhere , he’s tired of dealing with this refusal of help with incontinence care . I told him fine , just tell him No when he asks about dinner.
FIL does not recognize his limitations .
I have had DH hiring an ambulette to take FIL from hospital to rehab because I told DH ,” if you take him in the car, he may refuse to get out of the car at rehab “.
And we found out that the AL does not honor the POLST form that was filled out at the hospital. FIL does not want to go to the hospital anymore for respiratory failures . AL says they have their own POLST form but it’s not the same . They will still send him out to the hospital for respiratory distress which FIL does not want . FIL would have to be on hospice ( which he does not want yet ) to avoid hospital trips . So now that is an issue which could cause another trip to hospital and rehab . We thought the POLST form took care of this issue . I guess if he gets sent to the hospital again he either goes on hospice or goes to SNF . I’m sure AL will not take him back next time unless he’s on hospice , now that they know he does not want to be sent out to the hospital anymore.
The slog continues for now .
Or "we'll see"?
Taking your FIL "out" anywhere in his unwashed and in denial of his own incontinent state is unthinkable. It sounds to me like FIL has an extremely broken brain and doesn't recognize his limitations.
Stop trying to come up with reasons and simply say no. If he gets fussed or angry, so what?
Not everything is fixable.
Once my mom was dxed with demand was in a SNF, she only traveled via ambulette, with an aide. This was after she grabbed thecsteerwheel from my husband.
I'm certainly not advocating your taking FIL out to dinner, if it's going to be the cause of so much stress to you and DH! But hospice, at least to my knowledge, doesn't expect the patient to be homebound. I just think that by the time most people employ their services, the patient is probably too sick to be able to get out of the house much.
(((hugs))). I can only imagine how frustrating this all must be for your family.
A vacation , real (or not) is a good idea.
Thanks for the no votes.
I will tell DH , he does not have to cave and take his Dad out.
Beatty,
FIL does not successfully use the bathroom independently. He can not use a public bathroom. He needs the chair arms that are attached to the throne in his bathroom in AL. He is incontinent , does not wash properly, nor change his pull up often enough. He refuses toileting schedule. We have asked him to use the toilet before taking him out and he always refuses. I would not take him out. I don't think DH will either. We have only taken him out a few times to dinner (birthday, Father's Day) in the last 6 months because of his stubbornness with toileting. This is not a new issue. I don't see him becoming more cooperative about it. Talking to him about it never helps. I think it's best to try to drop it, If he brings up dinner will have to tell him he's too frail to go out.
This time I'll collect it & we can eat together where you are.
Let going out for dinner drop.
Unless he really pushes. Is pushing back too harsh?
Some goals to set with your physiotherapist may help go out for dinner again. Things like being able to walk safely, get in & out of a car safely & use the bathroom independantly when out.
I agree,
You are right. He does not see how frail he is, or he doesn't care. He just wants to go out. FIL does not recognize what he is asking of us .
If DH is not comfortable taking him out , he will need to put his foot down and say he's not taking Dad out .
He's not on hospice yet, But I am curious. If someone is on hospice are they considered homebound? Is he not allowed to go out to restaurants? I know when he was in rehab, or at home rehab, he was homebound. Only to go out for doctor visits, church, or a haircut.
I agree. It becomes a safety issue. Even though he may miss going out, he is denying that he is not the man that he was before.
Oh yeah, I understand that going to speech therapy early in the morning is not very pleasant. My friend’s nurse even told her that she wished that she had to go that early.
I don't like to talk early in the morning, I would not want speech therapy at 7:30 am.
I don't blame your friend for that one.
As far as FIL and dinner, DH is concerned . FIL wants no more trips to the hospital . FIL is frail. DH asked me" what if we have him at a restaurant and something happens?. I said well, I guess bring a copy of his DNR, POLST form, living will, your MPOA. " But then we didn't know, if we can't get him back in the car to AL, what to do . I don't think we can call an ambulance to come right away just to be a taxi back to his AL. Worrisome for sure. DH says he's leaning towards just saying he's not comfortable taking him out any longer.
I guess if we had him out and had to call an ambulance to get him out of a restaurant if something happened and we couldn't get him back to AL, once he got at the hospital, he could refuse treatment and go on hospice.
My friend can be a bit stubborn. I was upset with her when the nurse went over her schedule for the following day.
Speech therapy therapy was at 7:30. I had to giggle when my friend told her nurse, “Make it 10:00 and I’ll be there!” LOL
They compromised and started scheduling her speech therapy at 9:00.
Your FIL is a sly one. That’s so funny that he offers to take you and DH out to eat! 🤪 hahaha
FIL uses a walker, has been for years. He never follows up with his exercises for long in AL when he gets back from rehab, he sends PT and OT away, and his walking will get worse. It's like that movie Groundhog Day. Same thing over and over. He is in total denial of his abilities for hygiene and incontinence care.
FIL told DH he wants to take us out to dinner, LOL. That's his way of manipulating to go out !! We would be the ones taking him out , getting him in and out of the car, etc. He also keeps saying that he would sign himself out of rehab but he has no where to go. He has to wait until its considered safe to go back to AL. In the past he has signed out of rehab ama when he still was in his own home.
I'm sorry to hear that your friend is not doing well.
It does sound like it is going to be an uphill battle. I’m sure that your DH is appreciative of your support in this matter.
I don’t know how you can possibly change his mind about his situation. He’s in denial about his ability to cope with daily activities.
I am glad that he improved somewhat in rehab. That’s wonderful that he is able to walk better.
Does he rely on a walker for assistance with balancing? My mother was not able to get around without her walker.
I have to say that mom’s stints in rehab and her follow up visits from home health PT and OT did help her stay out of a wheelchair.
When my mother’s Parkinson’s disease progressed horribly, she could no longer walk. She was totally bedridden at her end of life hospice care home.
My mom was really good about doing her exercises correctly and consistently. Some people either don’t have the ambition to do that or they don’t have the capability to do it.
My friend who was recently in rehab had no motivation to do the work that is required for improvement, so naturally she is not improving all that well.
She’s doing home health now at her son’s house and I hope that she will be more responsive to doing the exercises. We’ll see.
I've learned to hope for the opposite, but that's just me🤷🏻♀️
I hope the Wellbutrin will begin to help her cope better.
No one likes rehab! It’s exhausting for them. I am sure that your mom wanted to go home.
My mom cooperated but towards the end she said that she would be glad to be back home.
I’m glad that your friend is on Wellbutrin .
It must be so difficult for your friend .
Her physical limitations are such a drastic change overnight .
She is overwhelmed , scared , depressed .
My mom was the same with her stroke , just wanted to go home .
I had a serious talk with my friend last night at her rehab. She isn’t doing everything that they are telling her to do.
I do empathize. I know rehab is really hard but she keeps saying that she wants to go back home. She is nowhere near ready to go home.
She is depressed because she feels like the PT isn’t working. I told her that it takes time. She’s expected to bounce back from this stroke sooner than it is possible.
It’s a problem when anxiety and depression set in. She’s on Wellbutrin.