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.
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I’m so sorry that this is happening. Such a frustrating roller coaster.
I recently had a 93 year old family member in the same situation.
Her POA did decide to just let her rest. She came back to her AL, with Hospice on Board.
She passed peacefully.
Such a relief.
I hope it goes that way for your FIL, as well.
I hope husband steps back, thinks it through and comes to the decision not to have FIL repeatedly tortured no matter what FIL says.
I wish you peace in a difficult situation.
Thanks for listening .
You mention that fil said that the doctor says he has to get stronger. Have you been able to talk with the dr and get his view? It might be a bit different from fils.
Hang in there, and look after yourself. He is declining and nothing is going to stop that.
I agree, hopefully a few more days will give a clearer picture .
DH spoke to one doctor the other day , but not since . That was earlier on and that doctor said he was critical and had called to double check with DH about DNR .
Yesterday while I was there, pulmonologist came in , says they will be doing pulmonary function tests . Doctor LOOKS AT ME and says will probably have FIL use a CPAP machine AT HOME.
I corrected the doctor , and told him that FIL lives in AL. Sheesh !!
DH finished up work early in Cali, is on his way home , 3 airplanes to get back here late tonight . He will see FIL tomorrow and see where his head is at .
Unless the doctors suggest SNF , I think at this point DH will probably let FIL decide what he wants , even if that means he goes to rehab knowing FIL will probably fail and end up in SNF or return to AL for a short amount of time.
It’s a sad situation . I know DH is struggling with this.
CHF is tough. It's what my mom had. She did the hospital/rehab/home revolving door for almost 2 years. Had a pacemaker put in; even heeded her cardiologist's desire to have a permanent port put into her arm and try a continuous Milrinone infusion - he told her it would make her "feel better". It didn't.
She finally reached the point where she said "enough is enough" and opted for hospice. She was tired; she could see where the only thing she was doing was kicking the can down the road, so to speak. She knew she was never going to get better. She passed 8 weeks later. Palliative care wasn't an option here.
I can't imagine how difficult this is for you and DH, given your FIL's dementia and stubbornness. I hope you and DH can get to a plan that FIL won't fight you on and will give you some much needed peace.
(((hugs)))
I also hope at some point , DH can persuade FIL to agree to a plan that lets FIL rest for the remainder of his days . Or the next time FIL gets worse , that DH is comfortable in just telling FIL he has to go to SNF .
I would like it if the doctor just told him to go to SNF, but not sure that will happen yet.
What I would do is make sure I am there when the doctor gives results of the tests. Your FIL will only hear what he wants to. Ask questions. I would ask if the doctor thought hospice would be a good idea even palliative care. I would talk to the AL and see if they would agree to having Hospice/Pallitive care come in. If your husband decides Hospice/Palliative is now what Dad should have, this will mean no more hospital visits, no more rehab. See if Hospice will allow some PT at the AL.
Rehab is not mandatory. Its a choice. I know, the discharge person says "We r sending Dad to rehab, here are the choices" not we recommend. My Dad turned it down. I swore after Moms last Rehab, there would not be another. Its a money maker for the Rehab because Medicare pays 100% the first 20 days. I told them there was no money passed the 20days, Mom was discharged on the 18th day. If you feel FIL would do well with some PT get the doctor to order it at the AL.
I spoke to the caseworker the other day about palliative care as a possibility . ( Unfortunately DH has been on the west coast for work but is on his way home now ) . Anyway, the caseworker was going to reach out to the AL about what they were willing to accept a far as ADLs , etc.
In April FIL had to do rehab and walk 150 feet with his walker unassisted before the AL would take him back . The two prior hospitalizations before April he had done rehab at AL but once he got there refused PT after a few sessions . FIL has been his own worst enemy .
His room is the second one off the dining room and I see other residents there that self propel in wheelchairs so we will see . But my suspicion is that AL may not take him back in a wheelchair because he is so uncooperative with care, toileting etc . I can’t blame them . If he can’t do the minimal amount of care he’s been doing mostly on his own then he will need to go to SNF because he will just continue to refuse the AL staff to help him there as he has done for over a year .
I read the doctor’s notes on his hospital portal . Today FIL told them “no more Bipap machine at night and that he just wants to go back to AL”. The doctor notes said They are going to have the palliative team come speak to FIL . DH called me in between flights a little while ago and I told him , and I told him to get back in touch with the caseworker tomorrow . OT and PT evals say to go to rehab.
So hopefully tomorrow will have more info .
Try to relax. It will unfold. Glad dh is soon home and can take over. Hope your trip with your gf goes well. If nothing else it will be a bit of distraction. ((((hugs)))
Meanwhile , he gets a message on his phone from the hospice nurse to set up a meeting for discharge planning with FIL present . They spoke to FIL today .
FIL ( with dementia ) is agreeing to anything (hospice at AL ) just to get out of the hospital. I don’t think he is understanding all of this. He just wants out of the hospital . By what I read in his portal , he is assuming he will go back to AL. FIL is saying he can do PT there, but I believe once there , he will refuse , he’s done it before , and I believe he’s too tired to do PT and will get too short of breath .
I’m quite annoyed that they have gone this far without having spoken to DH who is POA. FIL expressed he wants to go back to AL and they are trying to make that happen according to what I read in his portal. I think he belongs in SNF. There is nothing about if AL has gotten back to them whether they are willing to take him back . Last time they were not willing to unless he did rehab first and was walking 150 feet. These caseworkers work fast to push them out the door .
Rightfully so , DH would like some feedback from a doctor as to how long he may be able to last in AL if at all. We want to make sure he gets the care he needs. If him going to AL with PT is going to be a waste of time , might as well just put him in SNF now , or it will be like pulling teeth to get him out of AL and put him in SNF . DH called back to the hospice nurse and told her he wants this first meeting without FIL present. The meeting is at 12 noon tomorrow by phone .
IMO It would be best if he just went to SNF from the hospital .
They really just want to get rid of him don't they? And he just wants out. Definitely it is irresponsible to make those plans without consulting the POA - your dh. Can you or dh contact the AL and find out if they are willing to take him? and if so under what conditions. Surely it won't be less than last time.
Glad dh set the first meeting without fil and also wants some feedback from a doctor about the suitability of fil for AL. I totally agree with you, sending him straight to a SNF makes so much more sense.
You know if he qualifies somewhere between AL and SNF, he will need SNF very soon and a move to SNF now would be so much better than trying to get him out of AL in a few weeks or months.
Him not keeping himself clean is reason enough for him to be in an SNF. in my view. He could develop infections/irritations. I'm kind of surprised he hasn't had any trouble "down there" yet.
Keep us updated. Hopefully you will have more info tomorrow after dh's phone meeting. I did not include mother in those types of meetings, though when there were to be changes she was kept well informed and given some choices when she was able to make them. But the choice was not AL or SNF, the choice was e.g. which SNF of three.
Soooooo, FIL AL is saying two choices . He has to walk 75 feet with his walker and supervision only ,
OR he can return as is (which he is not walking ) if he signs up for hospice .
The hospital caseworker does not want to give FIL those two options right away because she doesn’t want that to be the reason he chooses hospice .So she suggests trying to get FIL to go to rehab and see what happens .
IMO FIL just needs someone to tell him to go to an SNF , because of his history of refusing care at AL and them being too lenient with that . I expressed that to the caseworker and stressed that FIL is not capable of making a rational decision of where to safely live .
I feel that is different than the man deciding on hospice or not . If FIL wants hospice fine . Our issue is where it happens .
I feel if he goes to AL , he is going to be rotting and told we have to bring aides in or move him to SNF anyway. And then we will have a fight on our hands with FIL , trying to get him to SNF .
I had my dad on hospice in SNF . There are no true hospice facilities by me . Does anyone have experience with hospice in AL?? I would like to know as I feel we would be having to hire aides to come in for him to get enough care .
The system has it's own standards. They never pronounced mother incompetent except when it suited them, and then it was a very specific incompetence where I could make a decision for her. It was weird! Not that I was anxious to make her decisions for her. but as it turned out the system and I did make those decisions but they still would not declare her incompetent. I thought it was a farce.
I agree that fil is not capable of making a good decision as regards his care.
Hospice in AL seems an oxymoron.
DH will have to call the caseworker tomorrow morning with questions . Meanwhile we have a meeting with hospice at 10:30 . 🤦♀️🤷♀️FIL would like to try rehab then return to AL, and again, no trips to hospital . I’m not saying a word anymore .
I’m done . FIL will probably go to rehab and either quit in two days or get too ill . FIL keeps flip flopping . We will see what tomorrow’s meeting brings but a decision has to be made .
And so far everyone is letting this unrealistic man with dementia decide including DH.
You are wise to back out. No one wins at this game.
It think a meeting with hospice is a good thing - a step in the right direction.
I expect you are right about rehab. He is not a well man.
Letting the demented one call the shots is not unusual. IMO, their preferences should be considered, but the final decision should be made by those capable of making a good/wise decision.
Would it be so bad if he went back to AL on hospice? I gather you are concerned about inadequate care there. You don't want him getting bed sores for example.
When mother was in NH she was well looked after in that regards -sheep skin booties etc.
Can the AL promise the level of care that he needs as he declines further?
(((((hugs)))) a stressful time!
Prior to us visiting FIL tonight , At my suggestion , DH had called the AL with questions this am .
After that call , DH had decided he would rather send FIL to AL on hospice than to SNF. He called it the compromise to have FIL go where he wants. FIL has money for aides to supplement . AL said they would let DH know when hospice wasn’t enough and they have agencies for aides they could call in for FIL. DH was very satisfied with that . I did throw out to him that if it doesn’t work out, as POA he could put FIL in SNF .
So that was the plan until we went up to visit FIL . I could tell by FIL mood when we got there, that when DH explained the discharge plan, he was not going to go along with it . The entire year plus , FIL thinks he can go against the rules of the system and negotiate for some unrealistic illusion based on his not being aware of how much help he needs with care .
We did tell him that when he goes back to AL , the aides will be coming in and he is to comply with care. ( which I doubt ) . I told DH , he’s back to wanting to go back to AL and not have them in his room much , that’s why he wants to try rehab , because he can’t walk . He wants to be able to “ do for himself still “. The AL that he is in also has an SNF ( by the same name as the AL) about 45 minutes away , so if it’s not working out he could go there . DH didn’t want him that far. But I told DH if it’s not working out and he has to be moved to SNF , it may be easier on us for the facility to tell him he has to go to “ another building “. . I said it’s either that or you put him in SNF closer now . At least it’s an option .
I am only going to the hospice meeting to hear what they have to say . The meeting is at bedside with FIL .
Once I made that decision, it was as if a huge weight was lifted. We spend so much time and effort trying to keep someone going because the alternative somehow seems unthinkable, but in reality, the alternative is doing what Nature is has been trying to handle before we got involved.
My mother was put on hospice the day she returned from the hospital, she promptly came down with Covid (thanks, hospital!), and she was treated in place at the MC. She came through it just fine, but she no longer ate from that point on. She happily lived on Ensure for the next seven months, and about three weeks before she died her hospice nurse and I came to the decision to withdraw most of her medications because they weren't doing anything any longer. She died peacefully and without pain in her bed without nurses and doctors poking and prodding her and telling her do "get stronger," and that's how it should be.
I hope that you and your DH are able to find a feasible solution to resolve this matter.
It’s completely obvious that your FIL needs guidance from you and your DH. He is beyond being able to reason and doesn’t fully understand what is best for his future care.
Sorry for the loss of your mother. I agree with how you handled her care.
FIL is not ready to accept hospice yet , he wants to try rehab.
Case worker says FIL can fill out POLST form since he does not want to go to the hospital again and possibly rehab will accept him.
He is not in good shape, but surprised us back in March in rehab and walked again. But he is declining. Unlike your mother he is more aware , wanting to make decisions, and now frightened.
Whatever he may gain in rehab will quickly be lost when he leaves , that I'm sure . I know it will be a relief when he stops torturing himself , At this point , that is what it is, which is why he says he does not want anymore trips to the hospital.
FIL has been struggling but determined to keep his independence, barely walking , and refusing help from the nurse's aides, this past year.
He's taking the weekend to make his decision and will let it be known on Monday. With the holiday , the earliest he would be discharged is Wednesday. However, we were told there is still the chance that rehab will be offered if his condition worsens again.
The last few days he's had some ( temporary ) improvement. I wish someone would be honest with him, about how very limited and temporary any progress he makes in rehab would be. He is trying to get back to being independent, which is very unrealistic. Right now the only thing he can do is feed himself .
But I'm not POA. DH is letting this play out. But DH and I talked about , what is next after rehab. If FIL Can Not walk 75 feet with his walker and supervision only, his AL will not take him back unless he's on hospice. No other assisted living place will take him. He will either have to go back to his AL on hospice or go to SNF on palliative care (or hospice). Even if he walks 75 feet and makes it back to AL without hospice, he will decline and will have the same problem in short order, to either go on hospice in AL or go to SNF. Either way, DH will have to deal with that conversation. So for now the torture continues, and may continue in rehab.
I totally agree, I wish someone ( a doctor) would be a bit more honest about how slim FIL's chance is of walking again , and how temporary any progress would be. Not to mention the stress rehab would be putting on his failing heart and lungs.
He has had some temporary improvement but we were told if his condition worsens before discharged from the hospital, rehab May Not be offered. (my last post has an error, it should say WILL NOT be offered.
IMO Everyone is more concerned with letting him decide without making it sound like they are forcing hospice.
I even told DH that FIL trying rehab could kill him faster than going on hospice. Which is the opposite of what FIL thinks.
It's sad, cruel, and unnatural at this point to not have this man just rest in his condition.
Which of course FIL did . It’s not my Dad , but as a former nurse , somehow it’s my problem …..🙄.
FIL wanted to know if it was worth going to rehab . He wanted to know his prognosis . I asked him if he has asked the doctor these questions . He said No . I told DH to go down in morning and hang out to try to catch the doc on rounds as well , and if not then tell the nurse he wants to speak to the doctor in his Dads room either Sunday or Monday and arrange that. The doctor often comes before visiting hours start .
Anyway, I asked FIL what was he expecting or wanting to gain from rehab . He said he wants to go back to the way he was in AL. I was right , that’s what he wants , to go back to his room and his false sense of independence accepting minimal help on and off .
I told him that his lungs are worse and now it has affected his heart . The plan is to keep him on Oxygen 24/7. FIL said “ boy that went downhill fast “. I said not really , you’ve been in the hospital 3 times in the last 6 months in life threatening respiratory failure. I said that is why you are being offered hospice if you want it .
And by the way , the hospice talk started because FIL asked about palliative care when he was feeling really bad on like Day 2 in the hospital. He also has said he does not want anymore trips to the hospital .
I told FIL to ask the doctor , if he felt any progress he made in rehab would be short lasting and that that may help him decide .
At least he will be more informed than making this decision with the false assumption that he will return to the way he was . I told FIL that he will need more help from the aides regardless . ( which is not new , it’s just me trying to get him to accept more help which he has been refusing all along ).
At some point he will most likely need hospice and if FIL is in denial DH ( POA) will have to step up and either do hospice in AL or palliative care in Nursing Home .
It certainly looks like this is going to be an uphill battle.
I feel for you and your husband. It’s so tiring to be in this situation.
I agree. DH played poker last night with his buddies. It happens about every 6-8 weeks. He told me he was bringing his buddies up to speed and that he told them this in and out of the revolving door is exhausting . One of his buddies told him that he was lucky that his Dad suddenly died in his chair after eating dinner one night at home so he didn’t watch him decline and he and his father did not have to deal with these type of decisions.
I am taking tomorrow off from visiting . DH (POA) will be the one to lasso the doctor for a pow wow with his father and him . The three of them can talk . I don’t need to be there .
It’s wise to take the day off. It’s so easy to forget that we need a mental and physical break.
There isn’t any good reason to over do and push ourselves further than we should go.
We can’t be supportive of others if we are too exhausted to think clearly.
I’m glad your husband took a break to play cards. Hope he won! 😊 His friend is correct. It’s a hell of a lot easier for those who don’t watch the slow decline of their parents!
My grandmother died like that. Her heart simply stopped. No suffering at all. That’s exactly how I want to leave this world.
God knows that I never want to be a burden on my family. I don’t want them to watch me slowly deteriorate.
I don’t want to suffer day after day. It really is a blessing when people are able to die quickly and painlessly. We should all be so lucky, right?
WHY do doctors NOT wait until there is family there to check in on patients and speak to them, especially elderly patients who might need a second set of ears to hear and understand what's going on? This drove me *crazy* with my mom, my MIL and my FIL! You know how those conversations go: "Did the doctor come in yet today?" "Yes." "What did he say?" "I can't remember/didn't understand." Great. Very helpful, Doc.
The doctors would tend to come in early in the AM, speak "medicalese" to the patient and then beat feet out of the room! Good luck getting one of them on the phone to clarify or answer questions! For goodness sake, do they really NOT understand that while said patient is in the hospital, it effects SOOOO many more people's lives? That many times family members are now in a sort of "holding pattern" until diagnosis and decisions are/can be made? I get many don't want to admit when things aren't going well, or worse - when they (gasp!!) MIGHT NOT KNOW the answers - but for heaven's sake! Radio silence isn't helpful to anyone! This is part of the job you signed up for!
Anyway, I think it's mighty disgraceful that no one from this medical team has reached out to your DH to discuss what might - or might not - have to happen next. I hope your DH can get some answers so you all plan for the future of FIL!
(((hugs)))
DH only spoke to doctor once on about day 2 when FIL was bad off and doc called to say FIL in critical condition . DH had doc on speaker, and I reminded him that FIL is a DNR/ DNI and that the hospital has that paperwork . I also told doc that I noticed that his progress note on the portal stated he was going to check with family about code status and that FIL was a “Full Code by default “ and to please note his DNR/DNI on file in his progress note that he writes regarding his phone call to family . Doc was rendered a bit speechless.
Part of the problem is it’s a big teaching hospital . Many different doctor’s , residents etc . I had the same problem when my parents were in the hospital , you can’t get much info out of the parent/ patient. And the doctor didn’t talk to me then either unless I happened to be in the room . And you are right , for all I know one or more doctors could have spoken to FIL about his choices and he forgot . But a doc should be calling DH , as he is POA.
Today DH asked FIL if a doctor saw him this morning. I already saw a progress note from a doc early this am in portal and I checked his labs. FIL first answered No. Then I said , are you sure no doctor came in this morning? FIL replied with ,” a lot of people come in here claiming to be doctors “.
"I asked FIL what was he expecting or wanting to gain from rehab . He said he wants to go back to the way he was in AL. I was right , that’s what he wants , to go back to his room and his false sense of independence accepting minimal help on and off".
Don't wish to hijack either. But my LO same.
Wants no more hospitals.
Maybe wants rehab...
Just wants to walk again & be like when independant & younger.
Old age sucks.
Sucks for them.
Sucks for us trying to nativate with them or steer for them.
Tonight DH said he feels bad for wishing Dad would just “ go in his sleep” to avoid this decision between rehab or hospice . I told DH that FIL is going to choose rehab and we will be dropping off food , clothes etc . I’ve already resigned myself to that . I told DH rest up now while Dad is still in the hospital .
(((Hugs to all ))).