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.
A little lull to rest before FIL decides which stream to paddle his canoe along.
Hours later Doc called DH with the answers to the questions , saying he believes FIL will gain some quality of life going to rehab and that if he continues PT in AL he can maintain what he gains . DH is skeptical of the amount of optimism the doc had . DH got off the phone and said that doctor is “ blowing sunshine up Dad’s a**.
So we knew FIL would go for that . Went down this morning to check with FIL . He wants rehab . FIL was a bit “off” today . Asked him if he still does not want to return to the hospital for aggressive treatment. He said yes , so DH had to call the case worker to let her know about setting up rehab and get the doctor to come back ( the doc was already in earlier today ) to fill out POLST form .
We waited for Doc to come back since FIL not having his best brain day . Doc came in did the POLST form very quickly , I’m not even positive FIL was able to follow along fast enough . It bothered me that the doc went so fast , assuming that FIL was keeping up , so I tuned out , while DH handled it . I busied myself collecting FIL’s things into one big bag . I do know that both FIL and DH signed POLST form.
We went home , case worker called to say there is a bed at the rehab near our house. The same one my mother was in for her stroke and my Dad was in once and then Dad was at the SNF upstairs for his EOL. So I get to go back there now . Uggh .
DH is tired of this ground hog day , hospital to rehab every other month the past 6 months .
DH is concerned about the fallout if his Dad does not ambulate 75 feet with his walker , the requirement that his AL has made in order for him to return there . It would mean either returning to AL on hospice , or if FIL does not want hospice……either finding another AL willing to take him, or SNF on palliative care .
FIL will not want SNF . And FIL would expect to go on tours of other ALs like when we first scooped him up from Florida and brought him to stay in our house while he toured . That is not practical now . We would have to quickly call ALs to see if someone would take him from rehab. We toured a bunch of them last year. So we are familiar with which ones we would try .
DH is assuming the fallout will happen . I told him maybe his Dad will walk the 75 feet and return to AL .
He may surprise you with some progress while he is in rehab. Time will tell.
My mom did rehab and home health in her 90’s and she showed improvement each time. She had Parkinson’s disease.
It wasn’t until the very end that mom ended up being completely bedridden.
I agree that it is too late in the game for him to stay at your home while you tour facilities.
If he isn’t ready to go back to his current AL, they will let you know at his care meeting. You will have a bit of time to find another facility.
He can stay longer than the usual amount of time but he will have to pay out of pocket for it. My mom stayed in rehab for a couple of extra days and paid for it herself.
Warning: May be delays or possible unplanned track works.
Be prepared to re-route back to hospital at any time. Also be prepared to re-route entirely to tje PallCare line.
Please enjoy your journey if you can.
I can feel why people want to jump off this endless train ride!
My reply “ It’s ironic, considering the man has fought the past 13 months to get out of AL , and now all he wants to do is go back there.
I told DH , if when the time comes, have the doctor tell him he can’t go back to his AL.
Need,
FIL has done rehab before and improved . The question is, will he walk that 75 feet .
Beatty,
FIL filled out a POLST form yesterday , indicating in general , not to go back to the hospital . There are specific things he checked off , the big things really. He does not want to return to the hospital and be “saved “ again for his respiratory , heart failure etc. He checked off to go to hospital for comfort only, etc . No IV’s anymore . But I can see that changing if he is in distress . For now FIL wants palliative care , but if gets worse go in hospice . I feel bad for him . Death is not coming for him quietly . He just wants to go back to his AL and stay there.
Today is only day 3 for FIL in rehab . DH received phone call, during dinner last night, from Rehab to have him come down today for care plan meeting. DH was not happy about having to leave work for this meeting . He said “ I’m DONE , I DON’T have time for this “. He is swamped at work already and told me he found out he’s losing one of his staff and is not sure will get permission to hire a replacement .
Visited FIL after dinner VERY BRIEFLY to bring more hearing aid batteries AGAIN. DH said “ He must be eating them” . 😬DH could not wait to leave . FIL claimed he walked nearly the whole hallway and back to his room with PT. Could be . He seemed rather chipper which is odd for him in general 🤷♀️.
On the way home DH says “ Now what ?” I said looks like he could be in another rally and if he walks that 75 feet he goes back to AL . I said maybe the meeting is because he will get out before 20 days and just go back to AL .
It rubbed DH the wrong way . He was a bit snippy last night with me while going over scheduling some of our own things that need to be done , which HE brought up . I’m thinking I’m avoiding him today as now I’m feeling a bit snippy myself and my BP is WAY UP . 😠😞
It’s stressful! I’m not surprised that your BP is up. I hope that your stress eases up soon.
It’s sad, but not unusual for us to snap at the person closest to us.
My daughters would tell their friends after a “sleep over” that I needed my coffee in the morning before I would be talkative! LOL 😆
And why is it called a “sleepover?” No one gets any sleep!
Same with FIL. Hearing aid batteries can be ordered online by FIL and delivered directly to him. DH should back off visits while work is do stressful. FIL was probably chipper because of all the extra attention he is getting in rehab.
I hear you about the boundaries . But DH has a previously scheduled vacation day for tomorrow ( which I insisted on ) so I didn’t say anything to rock the boat.
DH is a very sweet , funny man. But there are certain things he has a limited amount of patience with . I know when to let some things go . He just wanted it over with. None of us are perfect 🤷♀️
FIL isn’t capable of ordering on Amazon anymore I think . He says he forgot his password etc. Hubby set up new account , FIL never does it. He can’t manage any of those executive function things . His finances were a disaster . Took DH all last year to straighten it out . FIL has a cell phone that he thinks he needs too , but he isn’t capable of using it .
Need ,
DH seems in a better mood today. I’m having the bad day today . It’s my turn . 🙄🙄. FIL is at the same place where my Dad died . Going there upsets me .
DH texted me from the meeting saying, . They walked FIL to show DH . He needs A LOT of help getting out of the chair , and they have to hold on to him tightly with a gait belt while walking . His legs just don’t want to hold him up anymore. It’s been getting to that point for many months . It’s terrible , but I’m thinking what a waste of Medicare money. This will be his last rehab attempt DH says .
Sheesh .
Oh boy, DH came home (working from home today ). He said he had to have a side bar meeting afterwards without FIL present because FIL told them in the meeting he is independent with showers , toileting , dressing . DH told them he is not and that he sits in his pull-up all day and refuses toileting schedule at AL. Anyway , they estimate 2 weeks of PT.
I keep imagining he’ll be back two weeks at AL and fall . The man’s legs can’t support him anymore .
I had a serious talk with my friend last night at her rehab. She isn’t doing everything that they are telling her to do.
I do empathize. I know rehab is really hard but she keeps saying that she wants to go back home. She is nowhere near ready to go home.
She is depressed because she feels like the PT isn’t working. I told her that it takes time. She’s expected to bounce back from this stroke sooner than it is possible.
It’s a problem when anxiety and depression set in. She’s on Wellbutrin.
I’m glad that your friend is on Wellbutrin .
It must be so difficult for your friend .
Her physical limitations are such a drastic change overnight .
She is overwhelmed , scared , depressed .
My mom was the same with her stroke , just wanted to go home .
I hope the Wellbutrin will begin to help her cope better.
No one likes rehab! It’s exhausting for them. I am sure that your mom wanted to go home.
My mom cooperated but towards the end she said that she would be glad to be back home.
I've learned to hope for the opposite, but that's just me🤷🏻♀️
It does sound like it is going to be an uphill battle. I’m sure that your DH is appreciative of your support in this matter.
I don’t know how you can possibly change his mind about his situation. He’s in denial about his ability to cope with daily activities.
I am glad that he improved somewhat in rehab. That’s wonderful that he is able to walk better.
Does he rely on a walker for assistance with balancing? My mother was not able to get around without her walker.
I have to say that mom’s stints in rehab and her follow up visits from home health PT and OT did help her stay out of a wheelchair.
When my mother’s Parkinson’s disease progressed horribly, she could no longer walk. She was totally bedridden at her end of life hospice care home.
My mom was really good about doing her exercises correctly and consistently. Some people either don’t have the ambition to do that or they don’t have the capability to do it.
My friend who was recently in rehab had no motivation to do the work that is required for improvement, so naturally she is not improving all that well.
She’s doing home health now at her son’s house and I hope that she will be more responsive to doing the exercises. We’ll see.
FIL uses a walker, has been for years. He never follows up with his exercises for long in AL when he gets back from rehab, he sends PT and OT away, and his walking will get worse. It's like that movie Groundhog Day. Same thing over and over. He is in total denial of his abilities for hygiene and incontinence care.
FIL told DH he wants to take us out to dinner, LOL. That's his way of manipulating to go out !! We would be the ones taking him out , getting him in and out of the car, etc. He also keeps saying that he would sign himself out of rehab but he has no where to go. He has to wait until its considered safe to go back to AL. In the past he has signed out of rehab ama when he still was in his own home.
I'm sorry to hear that your friend is not doing well.
My friend can be a bit stubborn. I was upset with her when the nurse went over her schedule for the following day.
Speech therapy therapy was at 7:30. I had to giggle when my friend told her nurse, “Make it 10:00 and I’ll be there!” LOL
They compromised and started scheduling her speech therapy at 9:00.
Your FIL is a sly one. That’s so funny that he offers to take you and DH out to eat! 🤪 hahaha
I don't like to talk early in the morning, I would not want speech therapy at 7:30 am.
I don't blame your friend for that one.
As far as FIL and dinner, DH is concerned . FIL wants no more trips to the hospital . FIL is frail. DH asked me" what if we have him at a restaurant and something happens?. I said well, I guess bring a copy of his DNR, POLST form, living will, your MPOA. " But then we didn't know, if we can't get him back in the car to AL, what to do . I don't think we can call an ambulance to come right away just to be a taxi back to his AL. Worrisome for sure. DH says he's leaning towards just saying he's not comfortable taking him out any longer.
I guess if we had him out and had to call an ambulance to get him out of a restaurant if something happened and we couldn't get him back to AL, once he got at the hospital, he could refuse treatment and go on hospice.
I agree. It becomes a safety issue. Even though he may miss going out, he is denying that he is not the man that he was before.
Oh yeah, I understand that going to speech therapy early in the morning is not very pleasant. My friend’s nurse even told her that she wished that she had to go that early.
I agree,
You are right. He does not see how frail he is, or he doesn't care. He just wants to go out. FIL does not recognize what he is asking of us .
If DH is not comfortable taking him out , he will need to put his foot down and say he's not taking Dad out .
He's not on hospice yet, But I am curious. If someone is on hospice are they considered homebound? Is he not allowed to go out to restaurants? I know when he was in rehab, or at home rehab, he was homebound. Only to go out for doctor visits, church, or a haircut.
This time I'll collect it & we can eat together where you are.
Let going out for dinner drop.
Unless he really pushes. Is pushing back too harsh?
Some goals to set with your physiotherapist may help go out for dinner again. Things like being able to walk safely, get in & out of a car safely & use the bathroom independantly when out.
Thanks for the no votes.
I will tell DH , he does not have to cave and take his Dad out.
Beatty,
FIL does not successfully use the bathroom independently. He can not use a public bathroom. He needs the chair arms that are attached to the throne in his bathroom in AL. He is incontinent , does not wash properly, nor change his pull up often enough. He refuses toileting schedule. We have asked him to use the toilet before taking him out and he always refuses. I would not take him out. I don't think DH will either. We have only taken him out a few times to dinner (birthday, Father's Day) in the last 6 months because of his stubbornness with toileting. This is not a new issue. I don't see him becoming more cooperative about it. Talking to him about it never helps. I think it's best to try to drop it, If he brings up dinner will have to tell him he's too frail to go out.
A vacation , real (or not) is a good idea.
I'm certainly not advocating your taking FIL out to dinner, if it's going to be the cause of so much stress to you and DH! But hospice, at least to my knowledge, doesn't expect the patient to be homebound. I just think that by the time most people employ their services, the patient is probably too sick to be able to get out of the house much.
(((hugs))). I can only imagine how frustrating this all must be for your family.
Or "we'll see"?
Taking your FIL "out" anywhere in his unwashed and in denial of his own incontinent state is unthinkable. It sounds to me like FIL has an extremely broken brain and doesn't recognize his limitations.
Stop trying to come up with reasons and simply say no. If he gets fussed or angry, so what?
Not everything is fixable.
Once my mom was dxed with demand was in a SNF, she only traveled via ambulette, with an aide. This was after she grabbed thecsteerwheel from my husband.
Thanks for your responses . We have used the homebound excuse in the past to not take him out. DH has also used , “ We’ll see, you have to get stronger delay tactics . “. DH says now he’s just going to tell him no , he’s too frail .
DH doesn’t always realize when he’s being manipulated . He thought FIL said he wants to take us to dinner for running up books etc to him in rehab . I told him he’s just wanting to go out . He pulled the same thing in the past . FIL also tried to manipulate us to take him on a “family cruise “ last year . The man never suggested doing anything with us until now , that he needs a ride from us.
This morning ……
IMO , FIL belongs in SNF . I told DH that . He said he’s “ not arguing with Dad . Let him go back to AL and rot . “ DH said he’s not taking him out anywhere , he’s tired of dealing with this refusal of help with incontinence care . I told him fine , just tell him No when he asks about dinner.
FIL does not recognize his limitations .
I have had DH hiring an ambulette to take FIL from hospital to rehab because I told DH ,” if you take him in the car, he may refuse to get out of the car at rehab “.
And we found out that the AL does not honor the POLST form that was filled out at the hospital. FIL does not want to go to the hospital anymore for respiratory failures . AL says they have their own POLST form but it’s not the same . They will still send him out to the hospital for respiratory distress which FIL does not want . FIL would have to be on hospice ( which he does not want yet ) to avoid hospital trips . So now that is an issue which could cause another trip to hospital and rehab . We thought the POLST form took care of this issue . I guess if he gets sent to the hospital again he either goes on hospice or goes to SNF . I’m sure AL will not take him back next time unless he’s on hospice , now that they know he does not want to be sent out to the hospital anymore.
The slog continues for now .