So for those of you that have followed any part of my family's story - thank you LOL. For those of you that have never heard about it - the TLDR backstory is that my FIL is an (undiagnosed but pretty much confirmed narcissist) with a history of all kinds of abuse when it comes to my DH and SIL. A number of years ago BIL/SIL moved in with FIL due to their own hard times when FIL was still independent. And within 18 months FIL was completely dependent on them and losing his mobility.
Since that time things have deteriorated significantly. He should have been in an ALF many years ago. He moved beyond that quite some time ago. And we have desperately needed to move him to a SNF for at least 2 years now. But he is still competent and adamant that he would not go. And their continued dependency on him made for a perfect storm to keep him home.
Since right before Thanksgiving he has been in and out of rehab due to multiple falls. He fell, went to the hospital for a week, went to rehab where we had little hope he would even get out of the bed for the first week. But he rallied and after about 2 months (end of Jan) he came home. He was home 106 hours before he fell. Lather, rinse, repeat. This time he was there for 40ish days. Came home and was home less than 24 hours.
This time I told DH that I was out - if everyone agreed to continue this merry go round - I couldn't do it anymore. It was a danger to him and to them and to us when were helping.
We had a CTJ with FIL and told him that it was unsafe for him to return home. All medical staff agreed. Palliative care had been called in. They met with him and told him that he couldn't return home. And a meeting was called yesterday. EVERYONE (PN, PT, SW, OT, Family) but FIL was on the same page. He needed to be placed in a care facility.
Yesterday it was clear that he had "gently reminded" the SW and PN that HE was still in charge of his own decisions. The PT was miserable and at one point rolled his eyes when they actually tried to give us options for him to GO HOME when he said that was his wish (and the options were for outside care for no more than 10 hours a day)
And I finally had enough (remember, I tend to be the "spokesperson" for the family LOL) and I said, "Let me stop you there. We know he is competent and has the final word. We know he gets to decide for himself. And we aren't trying to make the decision for him. But let's be clear. BIL and SIL can no longer care for him in his home. That's off the table. At any point alone. So while he does get to choose for himself - you and he need to understand that as a family - we are not going to take him home unless he intends to hire care 24/7 to see to his needs. That is the only way he is going to be able to return to his home. Otherwise he is an unsafe discharge home."
I was honestly shaking. But I knew that my FIL had done what he always does, which was to lie to our faces and be calm and smile and tell us he understood. And then go behind our backs and manipulate them. He still believed he could tell them that HE was in charge and that everyone HAD to do what he told them. And that was that. And he IS still in charge of his own decisions. He is just also in charge of the consequences of those decisions. He can't have it both ways anymore because no one is capable of taking care of a 300lb immobile, incontinent, 90 year old man at home. ESPECIALLY not when they have health problems of their own. If he had his way, we would ALL stay there and take care of him 24/7. And that's not happening.
So after that, the entire tone of the meeting changed - we focused on the potential for ALF (there will be an assessment next week to see if there is any potential) and SNF, and the paperwork for the potential for a State run VA home was submitted by the SW. The PT continued to STRONGLY reiterate what he has been saying since the beginning - which is that FIL needs 24/7 Skilled Nursing. His assessment has not (continued in comments)
We are not out of the water yet. The next few weeks are going to be touch and go. And I know that at every single touchpoint FIL is going to lie and manipulate and that everyone is going to have to shore up their spines to get through this. But he knows we are serious and not going to back down this time. He expected when the SW started insinuating he could go home that we would just back off and not say anything about placing him.
He did not expect the entire family to stand and agree that he wasn't going home. He did not expect the PT to continue to say he shouldn't go home. And he didn't expect that his "friends" the SW and PN would turn tail and go the other way once the family disagreed. And that they would agree that he was an unsafe discharge if the family is unable to care for him.
So that's where we are. We are moving forward with his placement in the next few weeks provided we can find a suitable place. Until then he remains where he is. I'm sure it is going to be fraught with pitfalls and could awry at any point. But this is the closest we have been ever. So for the first time I'm actually hopeful!
Please continue to advocate for the best plan for FIL that takes into account EVERYONE'S health, mental and physical.
AND update us!
You have now instructed so many readers about just how to accomplish setting boundaries! 🎉
Also, I can't get past him being 90 AND 300 lbs??? I've never seen such a beefy old person! And we had eight 90+yr olds in my Mom's family (her and all her siblings). Wish I could see a pic of him just out of curiosity...
Keep your strong boundaries. Be willing to watch the sausage being made while he comes to grips with not being the Ringmaster anymore.
And as far as the picture - while I can't do that LOL...I can give you an image. Just imagine the cartoon character Baby Huey...
The only real concern of any nursing home, rehab, etc... is optimizing profits. They don't care about patients or their families.
They will try to convince a family to take a person home even when the family cannot care for them. Unless of course the person in question is rich and has top-shelf insurance.
You did the right thing not backing down though. When families don't give in, the care facility has to do their job.
Really, it does not matter what he wants at this point. He cannot be safely discharged. He has been deemed 24/7 care by more than one qualified person. If he will have no one to care for him in his home, then Rehab cannot discharge him. Happened with a friend of mine. She had a bad heart and diabetes and stomach cancer. She was in Rehab for a broken femur, had been in a wheelchair before her fall. Her boys were estranged and she could not afford in home care. They deemed her 24/7 care and would not discharge her.
I hope SIL and BIL can remain in the home. Since they were his primary care givers, there should be no problem with Medicaid.
I don't think an AL will except FIL. Seems he is a 2 person assist. He is beyond their care.
Glad things are moving forward.
You did the perfect thing.
You let the professionals, the father, the fellow caregivers know all at one time that you would not be participating.
That is the only way to do it.
And that is what you must stick with. That you and hubby will be leaving dad with the number to 911, and moving on with your lives if he returns home.
Many congratulations.
Yay! Great news!!!
Wonderful !!
You possibly SAVED the LIVES of CAREGIVERS in your family as well as others who read this !!
It’s time to stop this madness. Caregivers need to feel empowered to say when they have had enough .
I do have one question. Since his daughter/your SIL and her husband (any children?) are living in your FIL's home, how does this affect them? Is there a will that gives them the house, a life estate set up, or something else? Because if not, then that might be an issue that will have to be dealt with if he is on Medicare and outlives his present finances.
Some states allow the caregiver to remain in the home if they have provided necessary care for two years that kept him out of a nursing home. I would check into this. Would you really want them homeless after the care they have provided?
What would FIL have wanted? Maybe give them time to get settled then rent is paid to your husband? This is a time for everyone to have compassion. It almost sounds like you want to punish them for something? How much money did they save FIL while they provided nursing level care increasing his worth for you to benefit from? In my area nursing care begins at 12K a month!
Certainly either way they will need jobs and income to pay for utilities, upkeep, insurance, etc. Or find a place to rent or pay it to you.
The ugly truth is that this has all boiled down to a mutual propping up - FIL didn't want to leave his home - so he needed them to stay - and complained bitterly to DH about the financial support. BIL and SIL needed financial support so they stayed to take care of FIL once he needed it (which he didn't when they moved in) - and complained bitterly to us about taking care of FIL. We couldn't talk them into leaving so we couldn't move FIL to a SNF. We couldn't talk FIL into going to a SNF as long as they were there, so we couldn't talk them into making an exit plan.
They will have some time after FIL is placed to figure things out. But we aren't talking about them living there for years. It's just not feasible. They won't be able to do it. And we just can't help with it.
Yet he is still to feel the full effects of the mutiny.
Yes he can decide he wants to sail on as before. But without a crew... ? going to need a NEW crew.
"And he IS still in charge of his own decisions. He is just also in charge of the consequences of those decisions".
This. You got it alright!
FIL has this life lesson here (better late tham never?) That HIS rights of choice do not overule his relations rights of freedom.