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.
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 .
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 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.
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 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.
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.
Thanks for listening .
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.
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.