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.
“The never-ending cycle”
starring:
Everyone on the forum
It starts with all of us eating chicken wings (BEFORE caregiving). We have no idea what’s about to hit us.
There’s a reality show in this somewhere! 😆
May I be in it? I can be the person who was the totally lost soul! I’m finally free and cheering the others on by saying, “Please, don’t make the same mistakes that I did!!!”
Like Mid , not my monkey not my circus . It’s not my parent .
I’m going to have to try to turn off the nurse in me that is upset about what I think is disgusting neglect . I tried .
Unlike Mid’s MiL , my FIL is in a facility . I didn’t expect him to be sitting in filth but he is .
Mid and her family still have it worse .
I know that it’s frustrating to be caught up in a loop. The never ending cycle…
Hey Way and Need, thanks. It’s the first time today I’m laughing.
Need, about having lived it:
Yeah, we could be IN the movie. One of us could direct. Roll Camera Action! We don’t even need to act. Our caregiving experiences ARE the movie.
:)
LOL 😂
Count me out on that! I reached my threshold of pain in caregiving long ago! Don’t need to watch a movie. Unfortunately, I lived it!
Wait a minute! Way just sweetened the deal! Happy hour sounds great! I will even buy the first round! Oooooh, and appetizers too! 😊
come with us . It has happy hour along with Bingo , and trivia with Drinks and chicken wings !
The prizes are burnts senior brat dolls .
I know that, but it would be fun to meet up for something totally unrelated to caregiving! Sorry about my comment. I’m not making light of yours or Way’s situation.
I guess that I can say things related to non caregiving more easily because my parents are deceased.
I feel for y’all. I really do!
(((Hug)))
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.
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.
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 .
Let’s all meet somewhere! LOL 😆 Something a bit more interesting than BINGO!
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.
I don’t understand why some people are so difficult.
Way, I’ll see you at Bingo in a few days.
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 .
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.
It also sounds like he wants to live: not in a hygienic way, but he wants to live.
The man is totally delusional! Without a doubt he lives in his own little world.
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 .
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?
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 😆.
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.
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.
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.
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.