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.
Update on our movie:
The little cats are really an essential part of the movie, so I’ve approved all their conditions: wardrobe with matching colors, separate dressing rooms, “no means no” (if they say “no”, we must adhere)…
OK, so that’s sorted.
Way, you’ll have strawberry lemonade.
I’ll get chocolate milk.
Ana, your cat will be lead cat.
Need, your husband’s line “I have reached the threshold of my pain”, will be used throughout our caregiver movie.
MD, in the movie, you’ll remind us please to get some good sleep, dreaming of little cats (who don’t insist on their rights).
(Enter: JAWS MUSIC)
My daughter said she could never date a guy with the same first name as her brother . Which is unrealistic since he has a fairly common name for their generation . Well…. She is engaged to a guy with the same name ( on paper ) as her brother . But her fiancé goes by the shortened name . My son always goes by the full first name .
Bet that was a big red flag..
I was given a name idea - I took it as a *suggestion*. (I actually liked it but DH didn't go for it). Later there was surprise I had not taken the *suggestion* as a directive. Flag.
Then another rellie took offence because I had selected a name they *may* have wanted to use at some distant point in the future.. I am not a mindreader. (Also, unrealistic).
As you say, communication & control issues.
I will certainly have some stories for any sidelines in a film..
Purrfect !
I’ll try again.
Not that my situation is like Mids at all.
But I also have very little power.
DH is letting this go on . The only time he says anything to them about it is if I pressure him and he doesn’t do it often .
Here’s the thing , DH grew up in a family that discussed NOTHING . I met my DH when we were 17. I know them well enough to know that all the men bury their heads in the sand . My in laws divorced about 30 years ago ,at her request . FIL was devastated . He married someone else a few years later .
My mother in law is a very overbearing controlling person. All the men including my ( high functioning autistic ) BIL are very non confrontational . The first time I met my mother in law , her first comment to me was very passive aggressive . I knew from the get go that I would keep my distance from her . I could write a book . To tell you how controlling she was , first she tried to get DH to dump me, then she threatened to not come to our wedding because we weren’t letting her plan it her way. Not to mention she wanted to name our children. There is so much more …….
Anyway to backtrack , My father said a very wise thing to me. He asked if I wanted to start off my marriage giving in to her or stop her now . DH and I eloped instead . To this day , MIL says she never got to go to HER son’s wedding . DH and I on and off went no contact with her over her interference while raising our kids .
FIL never said much. His second wife wasn’t much better . Now that he’s single , he’s using the passive aggressive and manipulation that he learned from his wives.
I am grateful that my DH has a better relationship with our own kids . He is like an acquaintance with his own parents .
You guys are nice. You seem to accept the situation for what it is. The unhygienic-ness. The stubborn -ness.
Perhaps they think this all is acceptable to you all?
Do you have care meetings? What if you showed up and said "he is living in squalor, we can't accept this any more. He needs a higher level of care" (on HIS dime).
What would happen?
My only experience is with a very cooperative mom and believe me, THAT was quite enough work. If she'd been uncooperative, I would have had no compunction about walking away.
I don't do abuse.
I’m not being argumentative when I ask this .
How is not visiting FIL going to force AL to make any changes ? Isn’t usually the case that the family has to complain for a change to happen ? In general we always say make a presence , have the staff see you come , yada yada to get good care .
Im surprised they took him back this time . I thought they would say Memory care . They have it there. It’s not like they would lose a paying customer . It’s also the most expensive AL near us . I think they are too nice .
Should DH start complaining ? He’s too nice to them also. Doesn’t the squeaky wheel get oiled ?
Take two giant steps back, stop propping and they will step in to be the "bad guys".
All of that!!
Only I’ll have strawberry lemonade please .
I don’t really like alcohol much either !
An occasional glass of wine if with friends , which happens rarely anyway .
At least make it chocolate milk!
…NeedHelpWithMom
…Way2Tired
We can’t suddenly be Penelope, Geraldine…
Agreed, the therapist will be the bartender. I’ll order a strong shot of milk! (I don’t like alcohol).
Daisy gets a dressing room. In fact, every little cat gets one. We, however, must all share one.
They do his linens, laundry , housekeeping in AL . We don’t do that . I volunteer doing his laundry while he was in rehab only so things don’t get lost . I tried spraying to make his room smell better . The couch and a chair need to be thrown out is my guess. But they belong to AL except the recliner that we got him .
FIL removes protective pads if you put any on the furniture . He says he does not need them because he’s not wet . He needs to be in memory care with vinyl chairs. After 16 months of this , I don’t see him turning around . I suggested memory care but so far , a no go . DH doesn’t want to be the bad guy and deal with FIL . That is all I can do. I’m hoping AL soon says it’s necessary to move to MC.
When my mom was in IL I came once a week to set up her meds and take her shopping because I wanted to see her. If she had been a PITA, I wouldn't have shown up.
Facility did her linens; personal laundry could be done for a fee.
Enjoy your beach trip!
😂 Love the music from Jaws idea!
Okay, no cruise. Fair enough…you can pick the destination!
NO Cruise , my FIL always wants that from us.
It can be a beach resort or Europe or anything else .
Needs therapist could do a cameo but be the bartender . Lol
We’ll also insert some little cats. Just because.
Every scene will involve chicken wings in some way.
Way and I as planned, meet at Bingo in the movie. At first we don’t recognize each other. It’s all very mysterious. (Enter: mysterious music)
During caregiving scenes, we have THE MUSIC FROM JAWS.
Soon I’m doing a short beach trip for a few days with my almost 27 year old daughter. . She has had a bit of her own issue going on . Trying to cheer her up .
Our first Mother daughter get away .
I feel kinda bad I’m leaving DH behind though .
It can end with us drinking a cocktail on a luxury cruise! 😊
We were buying our very first brand new car. My husband had a figure in his head that he was not going to go over.
The salesman kept trying to up sell him. My husband can’t be sold. He buys when he is satisfied. He always says that it’s never a good deal unless both parties are happy.
My husband is Mr. Chill, a very even keeled man.
Finally my husband calmly says to him, “I have reached my threshold of pain. Call me when you want to sell the car to me for what it’s actually worth.”
I really wanted the car but knew not to show that to the salesman. We walked out and I said to my husband that I loved that car! DH said, “Me too, but at a fair price. He will call. Be patient.”
The salesman called three weeks later and sold it at what my husband offered.
DH is the middle child. So am I. We are the best negotiators at getting the best deal!
Thanks, we already know that we would have a lot of people who could relate to us!
My therapist has to play a part too! LOL 😆