FIL is back. What does that mean?
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.
250 Comments
Popular Questions
Related Questions
- My mom (86) was taken to the hospital and has a major bowel blockage. How do we deal with outsiders telling us what we should have done?
- How do you explain to a confused stroke survivor that his care is transitioning from nursing home PT to nursing home hospice?
- Puzzle me this. Any advice?
- What is palliative care?
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!
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”.
"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'.
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 .
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". :/
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…
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!
If you ever check in on the site. Please know that we miss you!
Meanwhile, update from my mentor (he’s a cat) on self-care. He told me the exact same thing Hothouseflower just posted:
“Go out and live your best life.”
Years ago, when I had requests for this & that piling up from the folks, my son gave me a direct stare & asked "what age do you have to be to say no to your parents?"
Oomph! That hit me in the gut.
As it should! A wake up call!
I stared back. Then laughed.
I am old enough 😆
We discussed: In fact we are always old enough, it just depends if we are willing to meet the consequences.
"All reasonable requests will be considered"
This was our outcome & my new catch-phrase.
Avoid rehab to go home alone to have family be their nurses, aides & rehab staff? Nope.
Lift people in & out of cars because they refuse wheelchair taxi? Nope.
Provide 24/7 on call service to avoid getting home help? Nope.
Reasonable? Nope.
Rediculous.
https://www.nyacp.org/files/District%20Meetings/Compromised%20Driving%20Ability_final.pdf
Hope all is well.
Hahaha, venting.
In fact, I have an appointment with my mentor in a few minutes (a cat) (he comes highly recommended by another cat).
I would agree with you . The next time I see MIL , I am telling her that her lack of planning should not be DH’s emergency .
But I suspect , I will get nowhere. Her way is the only way . She’s always been like that . I’m also thinking she may have a bit of dementia as well .
DH has said his mom is on her own , but he won’t follow through with that , he will help her . ( which means I will end up involved helping as I am with FIL . DH gets stuck at times and doesn’t follow through . ). I would prefer to avoid this since she is so difficult and just leave MIL up to the state as DH has suggested but it won’t happen.
Hopefully , she will live in an AL hours away from us . We think that would be best . DH does not think she will ask to move near us. I’m not so confident of that . DH also said he’s not moving her near us . I asked him “ how do you tell someone they can’t move to where they want to move ? It’s a free country .” He would have to just refuse to help , which won’t happen . Sheez.
DH also doesn’t think she will want to leave her ( our original ) home town and friends. But I know many of her friends have died , or can’t get out anymore . I also know she is jealous that FIL lives near us. She thinks he’s getting loads of attention that she isn’t getting from us . I think if she has to go in a facility she will want to move near us for frequent attention from us . We will see. So here we are in the “ wait for a disaster club “ for the third time . ( my Mom then FIL , now MIL )
I doubt he would go to therapy, it would mean having to talk . DH was raised to bury his head, feelings , and voice in the sand by his overbearing mother ( she divorced FIL a few years after we got married ). Like Mids DH , he is a different person when it comes to his parents . He needs courage to stand up to them or walk away . DH stood up to them when we were young . But he is finding it hard now because they are old and frail .
MIL is 86 and lives 4-6 hours away from us ( depending on NJ and NYC traffic ) and refuses to move from her two story condo . She needs a walker , won’t use one. She’s stooped over at about a 70 degree angle and has a drop foot from knee surgery gone bad and trips and falls . She is in denial and tells us she stands up straight when we tell her how stooped over she is . ( Next time I’m taking pictures and videos of her walking and showing her how she’s bent over from the waist ) . She bear crawls up her stairs , won’t move or get a stairlift. Won’t set up POA etc . (She says she has a will and that’s all she needs).
Still drives. She says she will know when she’s not able to drive anymore. DH’s aunt has called DH to tell him to take her car away. The aunt is in very good shape ( 10 years younger ) and told DH that his mother doesn’t brake to stop until she’s at a stop sign and she ends up stopping in the middle of an intersection . The aunt says MIL also has a lead foot and slams on the brakes ( which she has always done) .
DH has tried to talk to his mom about POA . She refuses but finally did put him on her bank accounts after multiple conversations about how someone may need to pay her bills for her should she stroke out .
DH solution for now about his mother is do nothing . He says without a car , how will she get what she needs. She lives with her partner who has early dementia and cancer and only MIL drives . Partner’s family is happy with this arrangement so they don’t have to lift a finger . They do have cleaning service come to the house. They say they don’t eat much. MIL has lost a lot of weight .
MIL has arthritis in her shoulders so bad that she admits the partner helps her with dressing . This came out because MIL’s partner did not want to fly to my son’s destination wedding . I offered to either help MIL or hire and aide . MIL refused and did not come . I witnessed that she can’t put on or remove her jacket . It has to be done for her , once on she can zipper it herself .
At times DH says to me she’s on her own , and let the state worry about her . Although I suggested to step back with FIL and let the state takeover but he said NO . Which makes me think when the mother finally calls for help , DH will run . DH has said he will not suggest to move mother near us in PA . Says he will try to get her in AL back home on Long Island when she lands in the ER . He said he should have left FIL in Florida and dealt with it long distance .
For now I’m hoping I can get DH to put up some boundaries and maintain them .
He just asked if he should call FIL to ask him if he needs anything . I said NO…..etc.
FIL has almost died 3 times in the last 6 months. We didn’t think he would still be here . Now DH thinks FIL will last for years .
Will your DH go see a therapist?
You and I are meeting for the first time at Bingo today. It’s today. I’m bringing chipwiches for us. Caviar for Daisy. Wish we could have caviar too, but it has to go all to the cats: we shook paw and hand on it.
Drank too much coffee earlier but I am tired and need to try to sleep.
Limiting contact may be your only option at this point because FIL won’t be able to pull your DH’s strings. Right now, he sees DH as his puppet!
You are correct, I can't back away or FIL will be in control of DH again.
I don't have it in me to put up with FIL in control any longer, especially since cognitively I can see it's only getting worse.
DH admits he isn't good at this. He'd just give in to him. Which is why I told him to limit contact.
You really have reached your limit! It’s tough going through this again.
Oh my gosh, I just saw a heartbreaking post. ‘Mom’s illness roller coaster’
Oh my word, Thanksgiving Day! Horrible!!!