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.
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..
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
🙄🙄😬😬.
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.
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 .
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.
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.”
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 “.
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.
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.
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 .
It will be ok.
Until it's not. Again.
Sigh.
(((Hugs))) for you Way.
All I can offer is your DH visits again only when ready. Maybe investigate the AL taking over FILs laundry? Does he have a cleaning service? Surely they report back if places have odours?
Maybe FIL just wants hope.. hope for that dinner out or a car! I'm in two minds whether to offer fake hope (..yes next week..) or not.
They do his laundry when he is there . We only do it when he’s in rehab and I bring his laundry to his washer dryer in his room not to my house. Like any AL there is housekeeping . But FIL has leaked urine everywhere , carpets upholstery . Smells awful. A couple of times it seems to get better when he is in the hospital . They must have tried something. I have also sprayed pet urine odor spray too . But this time didn’t help .
And I do not get why AL has not said he has to go to memory care yet. DH is fed up with his Dad’s stubbornness about toileting schedule . I’m fed up with how lenient the AL has been over it. But DH “ doesn’t want to be the bad guy “.
It’s tough especially for DH . DH says he can’t watch him sit in his filth and urine and sometimes excrement anymore , when he’s got help available but refuses . But he feels guilty for not wanting to visit . I’m fed up with what I consider neglect.
There’s no logic in your FIL’s thinking and that is what makes it so frustrating.
Plus, the fact that others are almost pacifying his delusional thinking, which makes it harder for you and DH to have a realistic conversation with him.
I’m not the best with words.
I am much better at Math and Science .
I totally understand what burnt is saying as well . But it’s still tragic to watch someone live like this who you know would not want to . We know that FIL decisions are made based on delusions.
Also those that pacify him are contributing to his lack of care . Someone needs to get tougher on that . He needs memory care.
I think your message was really clear. All of us who have struggled with caregiving, speak the same language!
At some point, we’ve all been ready to get the hell out of Dodge 😆.
Maybe your FIL won't improve with rehab. He has dementia and probably won't.
Sure, the doctors could be more honest with him. They could tell him that rehab would be pointless and he should now be in palliative care.
Or they could let him still have hope. The hope that he can still get better. He's old, had dementia, wears a pull-up, and lives in an AL facility. If he still in his dementia-addled mind thinks rehab can help him 'get better' then why not let the guy have it?
He did do rehab again . He’s going back to AL today . I haven’t seen him walk , to see how well he’s doing . But it was bad before he landed in the hospital .
When he is in rehab he drives us crazy about how if he had his own regular apartment ( not in AL) he could sign himself out ama . But he can’t because he has no where to go . AL would not take him back unless he improved in rehab .
At least he remembered this time, although he complained .
Previous times we have had to stop him from trying to sign out ama . We told him he would have no where to go , which was true .
If he doesn’t want to do rehab , the guy could refuse but he would not be able to go back to his AL. He just wants to go back there and kick the staff out of his room and be left alone again. It’s a vicious cycle . Hospital , rehab , AL …..refuse care , sit in filth (neglect) etc .
The man is totally delusional! Without a doubt he lives in his own little world.
It also sounds like he wants to live: not in a hygienic way, but he wants to live.
How far along is he on the dementia scale? Was he this stubborn prior to his dementia?
I’m sure that his dementia is playing a role in his abilities to rationalize his situation.
My mother’s dementia was so subtle in the early stages that I thought she was just being contrary. I look back and see that she was struggling to cope.
I wish that I had found this forum sooner because I truly didn’t know enough about Parkinson’s disease and dementia. You have the advantage of having a medical background as a nurse.
The guy is fixated on proving he’s independent . To him that means not having someone help .
He only allows help in the hospital or rehab so he can get back to AL to say he’s independent again .
He always lies in the hospital and rehab ( in front of us) and tells them he is independent with showering etc. when he is in AL. We always have to tell them he’s lying and how he sits in filth .
The guy just wants to die independent .
He also blew up when they told him he has dementia. He only agreed to a cog test because he wanted to give himself his own meds in AL .
It’s sad .
I don’t understand why some people are so difficult.
Way, I’ll see you at Bingo in a few days.
My mom did improve, but still relied on her walker. She couldn’t have ever lived alone because of the progression in her Parkinson’s disease and dementia.
Your FIL’s dreams of being independent are over! That ship has sailed.
Let’s all meet somewhere! LOL 😆 Something a bit more interesting than BINGO!
His first quick Cog test in AL showed mild dementia , but closer to moderate . Which I think was not accurate . I think back then he was already in moderate . But the guy is very smart and his short term memory wasn’t bad yet . But his executive thinking was bad for quite some time before that . His finances were a mess. He had open and unopened mail all over the place in his place in Florida when DH went there to retrieve him after his wife died . We didn’t realize because we hadn’t seen him due to Covid . And he could sound normal on the phone . He still showtimes and fools people.
Anyway he refused to follow up with neurology . He says they are crazy and his brain is as good as ever . They have restested him with a quickish test in the hospital a couple of times and it says early moderate . Again though I think the guy is good at working hard to do good on the tests . Almost a showtime tester . Those with vascular dementia which is probably what he has can seem very normal in conversations .
Being a nurse is part of my problem with this . I would never let my patients sit in filth .
I haven’t seen him walk yet . But last time after rehab his walking went downhill fairly quickly because after rehab he sits in AL , refuses PT.
They told him he has to keep up PT for exercise . But doesn’t Medicare put a cap on that ? Whatever . The guy wants to die before he stops being able to walk again .
That doesn’t always happen . So he keeps going to rehab .
Need,
“Let’s all meet somewhere! LOL 😆 Something a bit more interesting than BINGO!”
You might have misunderstood. Way and I have an appointment at Bingo next week, because we believe we’ll be in facility for broken-down caregivers.
Well…for instance my mom was always sharp! I mean to the point of if someone made a mathematical mistake at the grocery, God help them! LOL 😆
She wasn’t mean about it but she clearly pointed it out because she lived during the depression and was careful about every dime that was spent. I totally get that. I learned the value of money from my parents. I learned very strong work ethics too.
She took her own meds. She created tons of items to sell at craft fairs and local businesses. She did exquisite work!
When I started to see that she couldn’t remember what I had just told her five minutes ago, I suspected that there was a problem.
She would try to reach up to the highest shelf in her closet even though I asked her to let me get things down for her. Of course, she felt embarrassed to ask and tried to reach up and fell. I ended up moving everything off of the top shelf! I felt like that was my responsibility to do to keep her safe.
There were lots of little things. Then, she tried escaping out of the front door in the middle of the night. Seroquel and Ativan fixed that issue.
And so it goes…sadly until death. No cure for progressive diseases.
(((Hug)))