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.
She was in a NH, slowly dying. Not eating, unable to feel her hands and feet, huge pressure sore on her tailbone that went to the bone.
The aides at the NH were unbearably chirpy. "Oh, Alice, we're going to have you dancing in no time! PT this afternoon!!"
I remember once she looked at one of them and said "Are you retarded? (Pardon my use of that word) I'm DYING and I'd like to do it in peace. Leave me the hell alone."
After that, they did. I know they meant well, but why give her false 'hope'? She was about 95 and she was DONE. Once they did pull back in the chipper attitude dept, she was a lot 'happier'. She wasn't afraid to die: she was afraid she'd keep on living!
The medical community will do everything in their power to keep people going as long as possible--whether the patient wants to be keep alive or not, sometimes. I know, that's their JOB, but, seriously, let people have the dignity to choose if it's time to stop all the treatments and be realistic.
Sounds like your FIL isn't quite ready to accept the end. That makes it much harder. Also sounds like time for Hospice, or Palliative care if the words "Hospice' are just too scary!
Way, just letting you know, you have nothing to worry about, about Daisy. While you’re a-Way, I’ve been feeding Daisy caviar every morning and evening. Afternoons, an assortment of fish.
The caregiver movie is going well. Everything is under control. Mini-bar…
Thank you to those of you who asked if I was ok, or to anyone else who sent or thought well wishes . It is appreciated. I feel like I should not whine, I'm not doing hands on caregiving and others' have it worse.
But I'm going to whine anyway. So a few weeks ago I ended up at the ER with a bad asthma attack. (I had mild asthma as a child but grew out of it.) Never before have I had to go to the ER my entire life. Had allergy testing done, non conclusive on some things, mild on some things. But I had started working for a new family ( my semi retired job is to work part time as a nanny because I enjoy it ), and tried to return to work and asthma acted up bad again. Doctor ultimately said it could be the chicken poop in the coupe in the backyard. Needless to say I had to leave the job, it was so bad. I had no idea it would bother me. I'm a lifelong suburban girl that has never been that close to chicken poop before!
BarbBrooklyn's last post on this thread was that I entered Dorker/MidKid territory. Not as bad though because at least FIL is in AL. I don't know Dorker but I do follow Midkids thread. I am seeing some similarities with my DH. At times DH ignores things about his father that should be addressed and I have to push him . He so dreads seeing his father, has been going less often , comes back cranky. FIL recently said he was thinking about moving to NY ( we brought him from Florida to be near us when his wife died ). DH said he's not going through the trouble of moving him to another state. I told DH to tell his father he is too frail for a big move like that. For now he hasn't asked again. We are all originally from Long Island and the step daughter that was coming here visiting and getting FIL to write checks still lives there and told him about a place near her. (PS he no longer has his checkbook or a credit card. She was taking advantage of an elder with dementia). For some background, FIL did not raise these step children , we were all adults when he married his second wife.
Yesterday he asked for his checkbook and credit card back. I was expecting that, as it was the birthday of his deceased wife's favorite grandchild last month. Stepdaughter probably told FIL that he missed her birthday check for her 23 year old daughter. This is the same favorite grandchild and the stepdaughter came out here and got FIL to write and give a check towards grad school this summer when she visited. I told DH to tell his father that AL does not want residents having blank checks and credit cards. FIL has cash on him (to tip the haircut person) or if he wants to go on a outing which he won't. He does not go on any of the outings. He barely walks and can not walk up the steps of the van, and refuses to go in the wheelchair and use the lift. DH is also still trying to figure out all of FIL accounts, investments etc. FIL lost important records who knows how long ago. DH is so fed up. Lately DH says he should have left him in Florida and not have to deal with this mess. DH said all this leaves a bitter taste because he hardly heard from his father the last 30 years when he got all tight with his second wife's family.
So that's the "whine". :/
Two of my closest friends are dealing with their own cancers , and one of them just found out her husband and daughter were just diagnosed with cancer as well . My sister who had metabolic encephalopathy beginning of the year and almost died , is not doing well , She is finally getting tested for Parkinson’s . Her walking has been terrible . So sad .
But next week we are seeing our kids so that’s good . We are hoping next year is better with less sadness .
"We are hoping next year is better with less sadness."
Oh yes 😪 me too.
Your little mention of that 'cruise holiday' pressure.. flashbacks to my own LO pushing for long car trips to see distant reliatives.. oh give us all strength!
My answer was 'You want to go? OK. Call yourself a taxi'.
Exactly !!! FIL wants car trip to see the steps . Not in my car with his blow outs from his much needed laxatives! Plus he would get disoriented in a hotel room . In 18 months one stepson and daughter in law came to visit him once . One has not come at all . The step daughter has come a few times and always left with a check . She hasn’t come since we took away the one checkbook that FIL had with him to just appease him . He has never written any other checks, only when she came to visit and collect . He is now asking for it back because she reminded him that her adult daughters birthday was last month . We don’t care about him giving a birthday gift to her . It’s the fact that it starts FIL off on how he’s independent and wants to keep his checkbook and wants his credit card back and wants to move to an apartment blah, blah, blah . He’s already lost the checks in his room before and we had to search . So then he started carrying the checkbook in his pocket on him. Last time he went to the hospital he had them there . We don’t want to deal with it anymore . DH is learning the word “NO”.
The step that hints for adult's birthday cheques..? Whatta nerve!
Thinks FIL is her Cash-Cow.
Ask him to write a cheque out for one dollar 🤣. That the 'kid' can but a whole bag of sweets for that!