So maybe this is typical, this is new for us. FIL has had a run of hospital and rehab stays since Thanksgiving and we know we are at ¨that point¨. The family is 100% in agreement. Of course the only hold out is FIL. This is where my question comes in.
For those who don't know, the TLDR backstory is that SIL/BIL temporarily moved in with FIL before he needed a caregiver due to their own crisis, and FIL is a raging narcissist and decided that he never needed to lift a finger again because they were there. This was the perfect storm that started his downward spiral into losing his mobility. He is still competent, with some age related decline per doctors. A lot of what we see as dementia like behavior is due to his incredibly narcissistic self-focus.
Anyway, his trips to the hospital and rehab have earned us quite a bit of documentation in his portal (for the record, we manage his doctors appointments and prescriptions, when I say he stopped doing for himself, I mean completely) and now I´m wondering why a lot of this has not been brought up to him. Now I realize that often medical professionals don´t mention every little thing. Nearly every single medical professional that crossed his path in the hospital noted in his chart the same exact statement.
¨Patient´s level of function at discharge NOT expected to return to prior function. Increased physical deconditioning and debility. Will require 24/7 care with lift assist. Recommend SNF placement.¨
When I say that this was in his chart multiple times, I mean that over the course of two visits, that lasted a total of a week each time in the hospital - during which time he was seen by the intake doctor and nurse, and the attending physician, nurses, physical therapist, occupational therapist and then of course the social worker. There were at least 20-30 entries in the portal with this statement or something similar.
But not ONE time was this ever mentioned to him. The first time he was transferred to rehab for 2 months. And he was literally transferred from the hospital and into rehab on a gurney and we thought for sure he was never going to get out of the bed. For the first week he was in rehab they were using a hoyer lift to get him out of the bed. Then he rallied and did what he had to do and spent two months getting stronger and was discharged home. He was out of rehab, not even home but literally door to door, rehab to hospital - 106 hours for another fall.
He insisted he was going back to that rehab from the hospital. They ¨couldn't¨ take him so we found another place. The portal notes said they ¨wouldn't¨ take him because they could not do anything more for him. SIL took a closer look at his discharge paperwork from the original rehab, it said he was discharged as mod/max assist, so clearly not ready to go home where his caregivers just had back and hand surgery between them!
When he got to the new place we had the care plan meeting. The new PT said that currently he is still mod/max assist and that if he doesn´t make any progress he will be recommending 24/7 care with lift assist either at home (requiring hiring help) or in a SNF. He was talking to us on the phone and FIL was in the room. FIL wasn't paying attention. I said ¨I want you to look at him, make sure he can hear you, and say that. Because he needs to hear that from someone besides us!!"
Is it really typical for medical professionals to put that in someone's chart but never actually tell THEM directly when they are competent? Why wouldn´t they tell them directly? Try to prepare them? I know it´s not their responsibility to manage a patient´s life beyond the hospital but why would they not tell them something that is coloring what places like rehabs and other doctors see about them when they look at their charts?
It would a huge help to us if FIL knew it wasn't US telling him he needs to go. He thinks we are trying to "put me in a home," not do what is in his best interest!
Ultimately in order to get him to stay we would have to refuse to pick him up and leave him to his own devices to get home - and I do not think they are there yet. It is not complicated on the surface but when you get into their codependent relationship it becomes very complicated. It is not just him that needs them. It goes the other way too.
I completely agree with you and would have liked to have seen him go directly from the original rehab or honestly the original hospital because the condition he was in was not even conducive to rehab.
As far as reading - yes he can read - but his eyesight is very poor. We HAVE read it all to him- we have told him that the other rehab denied him. We have told him that all of the medical staff recommended him for SNF. He just chooses not to believe us because they did not tell him themselves.
More than anything I am curious why they didn´t mention it to him. Is it because they are concerned that he might not even try to rally himself? Is there some underlying reason I am missing here that might prevent them from telling him directly? They told us directly. Why wouldn´t they tell him?
If that doesn't work make an appointment with his doctor and have the doctor tell him face to face.
This is not a complex deal, it is all there in black & white.
Ideally he should have been transferred directly in the first place.
But there is a history of abuse from FIL that has left SIL (and DH) struggling with standing up to FIL, and SIL and BIL live with him and have a very codependent relationship so once you dig into it, forcing the issue becomes much more complex. The best case scenario would be to deny picking him up and leave him to his own devices to get home and see what happens. But that is not likely to happen because he is a bully and spent years conditioning both SIL and DH to do his bidding upon threat of abuse. They are both working through it now, but because BIL and SIL live with him they are very likely to pick him up if he demands it. They know they are unable to provide the physical lift assist care he needs and the whole thing is unsustainable and at some point it is going to fall apart. But I think unfortunately there is no way we can force them (any of them) to be proactive until it is emergent and we literally don´t have any choice because of the situation.
Believe me, it´s absolutely not the way DH and I would do it if we had a choice. DH is POA but it is not in play right now. FIL is still competent and rules with an iron fist even though everyone is an adult. He is very used to getting his way and makes life a living hell if he doesn´t.
My thought was that if someone else told him that he needed to do this it might carry more weight because he still thinks of his adult children as just children and their opinions do not matter to him in any way. He does not value them. But medical professionals he values.
But it's also true that a lot of health care workers seem write off anyone over a certain age that presents as frail and/or confused without ever bothering to learn about their previous health status.
Especially considering the fact that he would never do anything to give us any cause to believe that we are right and that he needs additional help. He really believes that the codependent relationship he has with SIL/BIL is only for their benefit. He doesn´t really believe that they are helping him much at all. He hasn´t yet fully come to terms with the fact that if they were not living there he wouldn´t be able to stay there. He thinks it is all one sided. So giving us any ammunition to show that he needs their help or anyone´s help at all would be against the grain of who he is.
Admitting that medical professionals believe he needs to be in a SNF full time would be admitting everything they do for him is necessary and that he needs them as much as they need him.
If they are willing to care for him when he is discharged then the facilities will continue to discharge him into their care.
If they can not care for him any longer or do not want to care for him any longer and they say that they can not safely care for him upon discharge then the facility can not discharge him. But if they keep saying they will care for him this scenario will be repeated.
If money is not a problem then allowing discharge to home ONLY if he accepts hired caregivers and the use of equipment might be an option.
The doctor can write orders for a Sit to Stand or a Hoyer Lift and that he needs 24/7 care in order to remain at home.
The next time he is at the doctors office..or hospital whatever comes first... while you or another family member is in the room have the doctor tell FIL that he can no longer safely remain at home, that he needs 24/7/365 care. The doctor should then ask FIL if he understands and he should ask him follow up questions to prove that he understands.
That is really the crux of the problem. He does not want to spend any money on his own care. He has long believed that his care should come from his children. He has never had a plan other than one of his children taking care of him. We (DH and I ) strongly suspect that he had originally planned for that to be DH ( that would not have happened at least hands on, we would have gladly helped him find an assisted living facility and helped him move but both of us still work full time and quite frankly would not have wanted to get in deep with FIL´s care even before we realized that he was a narcissist because it was evident that it was going to be much more than we could handle even before it go to this point) but BIL/SIL´s time of need was actually very convenient for him in that it provided a natural option for him.
Therefore, when it came up, I was called an effing liar, to anyone, anywhere.
I really recommend that the POA gets together with the discharge planner and stress the importance of the hospital staff telling him the doctors are saying 24/7 care aka nursing home.
Have any of you tried not propping his charade of independence up? It shows quickly when we need help and nobody is providing it.
It is really difficult to enforce boundaries, especially, when a situation has been going on for a long time but, it is a must when dealing with challenging personalities.
You guys can do this as a team. You got this!
So the process has been slow - while the process of him losing his independence has been far quicker than we could have ever imagined. Once he started - a lot of it was by choice - he chose to stop doing a lot of the things that indicated independence and would have kept him independent and mobile for far longer (a product of his narcissism) failing to really grasp that in gaining what he wanted short term (someone waiting on him hand and foot) he lost what he really wanted long term (his independence and the ability to remain in his home)
Unfortunately the move towards developing their spine has not kept pace with his rapid decline and we find ourselves at the point where they have to make decisions that they are not completely emotionally strong enough (read: prepared to stand up to him, have come out of the FOG, can deal with the mental, emotional and verbal abuse, are not triggered immediately by the conditioning of childhood trauma) to deal with him yet, but don´t really have a choice. So for every step we take forward, we take one back. We are making progress, it is just really slow.
I often insert myself when he gets too aggressive because he does it on purpose to push them too hard. It is designed to get them to back down and cower. I cannot even imagine what he did to them as children - I have heard stories. I am not happy about the fact that we are even in the position to be caregivers. They both still consider a lot of what happened to them ¨normal¨ and will often describe things that leave me in tears and shaking my head and I don´t always have the words to explain that what they experienced was not actually normal. I know that every family has their dysfunction. And I know that by today´s standards there are a lot of kids that would consider the types of discipline that any of us experienced abusive. But that is not by any stretch of the imagination what I am talking about. And in their minds this was ¨normal¨.
So the fact that they are even dealing with this in an even remotely healthy way is amazing to me. I have to keep telling myself that he is their father. He doesn´t deserve it. But I think I have spent too much time considering this and the dynamic is just wrong.
Honestly, given the choice, I think I would walk away. I would do anything in the world for my mom. Because she did everything in the world for me. And expects nothing in return. He did nothing for them. And expects everything in return.
And no, I don't believe that ANYONE telling FIL what he "needs" is going to help. He isn't going to listen.
FIL is in denial. As long as family supports him in any homegoing this cycle will continue. Family at some point enables bad decisions.
FIL should be TOLD that he will be left at home with the 9 1 1 number. And if he chooses to go home he should be left at home with the 9 1 1 number.
I just don´t know how to be supportive of DH when I know the way we are doing this is wrong. We are being led around by our noses - by more than one person.
To answer your question - yes as far as I know the dependency goes both ways. I think there are other options but none that will be quite as supportive for them. All three of them are miserable but are locked into this cycle because it ¨works¨ for them but it can´t continue. It works for FIL because he refuses to leave his home and this is how he intends to make sure he gets that.
DH and I are peripherally involved because while we help as much as we can with his care, we feel like we are watching a movie where we are sometimes missing the sub-plot. Or the key. We know what should be done, and we do everything we can to make that happen. But we can´t prevent any of them from doing what they will do.
They don´t want him to come home. DH does not want him to come home. But as to whether any of them have the strength to not pick him up - I just don´t know. And personally - as terrible as this sounds - *I* could do it because he has nothing over me - I am not indebted to him and he did not have years to condition me to be afraid of him. So I could do what needs to be done if it was just me - but if I did it alone I would certainly become persona non grata to the rest of the family because he would make life hell for them.
So for me it is a Catch-22 situation. What I personally need to do is get out of my own way. Stop inserting myself and stop getting involved and stop helping and just stop. Because I just keep running around in circles and coming back to the same point over and over. We have been here multiple times. And we will be here again. And again. Until we get to an actual emergent situation where there is literally no option, where he cannot get on his feet and the choice is completely and utterly removed and there is no possible chance he can even get out of the bed. As long as there is even the slim chance that he can recover and even the slim chance that he can help himself at all - we will do this ridiculous dance because everyone involved thinks it is easier than poking the bear.
Meanwhile, quite frankly, the bear has been declawed, de-balled and his growl is all that is left of his ability to instill fear. But all of those years of clawing at them left it´s mark.