Husband has Parkinson’s and dementia. He went to snf following a hospital stay for short term rehab but I decided it was time to make this permanent as I could not manage him at home anymore. The last few days he has become totally lucid and wants to know why he can’t come home since he’s doing so well. Says he would never do this to me. He was agitated and struck out at staff when they tried to wash him insisting he could do it himself. Took him to my daughter’s for Christmas and he was perfectly fine, no falls, no delusions, no incontinence. Has he become stable enough to come home or will he revert back to previous results? He does not understand the situation. Said he has regained what he lost and doesn’t deserve to be in this “prison.” He wants to know why I left him there. I visit every day and bring him a treat. He calls me constantly when I’m not there. I am feeling guilty and overwhelmed. Should I have tried harder tocontinue the unmanageable situation at home? Assisted living is probably the best place for him with the freedom and activities offered, but that option is not affordable.
There is nothing to make this easier, to make it OK, to make it without grief and heartbreak. When you think on it, is it not WORTH grief? Rage?
Guilt versus grief. Prison versus human limitation to provide care. We can use and switch about the semantics all we want. The only answer here is the honest answer. "You have _______________(insert the limitations) and I can no longer safely care for you at home because of my own limitations." And when the response occurs to say "I am so very sorry; I wish it could be otherwise. But this is where we are. I will visit you. I will do what I am able to do. But this is our reality, and I understand how much it hurts."
Being sorry doesn't help anything. We on Forum say it over and over. Sometimes grief is on the doorstep and we cannot keep it at bay. Accept it. Thinking we can cure everything is indicative of an omnipotence that belongs to the Gods. Not everything can be fixed. I am so sorry and wish you the best.
"You have _______________(insert the limitations) and I can no longer safely care for you at home because of my own limitations. Tears are rolling down as I write this. I know exactly how Pamilton is feeling, the lucid moments are so confusing and painful.
So if you can no longer take care of him, then you must leave him where you know he will receive the 24/7 care he needs. And you can tell him that he has to stay there until his doctor tells you it's ok for him to return home, which you know will never happen, so that way it will be the doctors fault and not yours.
It's hard I'm sure, but you have to do what's not only best for him, but you as well. God bless you.
meds regulated … lots of eyes on him .. nurses … support workers etc
i think part of him knew it to be true
Especially as disease progressed …
and this disease only goes one way !!! IMO you can’t rely on him to make decision.. you have to make decisions good for both of you … their brain broken . I always felt horrible when he asked go home .. deceased now … but I think it was right decision… nice group of psw’s
aides nurses .. eyes on him 24/7
activities and lots people around … much better than being isolated at home with me or caregiver … waiting for someone to visit …
best luck
He went home and started the slow slide back downhill. He got weak again, was in pain, fell over 40 times. But was lucid enough to know he was still in control. He finally got so bad, we could take control and had him readmitted.
The difference: he did so much better in a controlled environment - regular meals, meds, bedtime, all regimented. He could also get stronger meds than he could get at home.
So keep all of that in mind too. A controlled environment is critical sometimes.
Sick elders thrive in managed care because their care is managed. Bring them home and watch them sink back down to the bad place they were in when managed care was first recommended! 😮
For today, he's lucid enough to tell you he 'doesn't deserve to be in this prison', hoping that will get him out of the care situation he's in for his own benefit and well being. Tomorrow can and probably will be an entirely new man you'll be faced with; there's no rhyme or reason to this disease and it will keep YOU totally off balance, not knowing WHAT to expect every day. Do you want to deal with such a thing?
You weren't able to manage him when he was home before rehab, why do you think you can manage him now? Because during a lucid moment, he used some manipulative techniques to pull at your heart strings?
The definition of insanity is doing the same thing over and over again and expecting different results. If you bring him home, expect him to be the SAME man you couldn't manage LAST time you had him admitted to the SNF. Maybe even worse now that his disease has progressed.
You ask, Should I have tried harder to continue the unmanageable situation at home? The answer is NO, of course not. The fact that it was 'unmanageable' to begin with gives you your answer right there!
Please do not fall into the trap that 'home is the best environment' for a man with the conditions your DH is experiencing. You are not qualified to be a substitute for the CARE TEAM that's located in the SNF where he's residing now. Remember this when you feel somehow responsible to take him home or somehow 'guilted' into bringing him home. You have nothing to feel guilty about; you're doing what's BEST for HIM by keeping him where he's at. And you're also keeping yourself safe at the same time. That's your duty to YOURSELF.
Wishing you the best of luck coming to terms with your husband's condition and taking care of YOURSELF in the process.
He may seem better, but let’s face it…he wouldn’t be referring to it as prison or saying he doesn’t understand why he can’t be at home. You didn’t go into details of what all was happening at home in your post…but if he was incontinent, aggressive, wandering, doing unsafe things (leaving stove on etc) then he must not remember what all home was like for either of you, therefore, he is not really better. He is scared and that’s totally understandable. He may come off as mad (fighting w/nurses over bath), but he’s just frightened at this new situation. He and you will adjust. You understand it’s the best thing for him. You are not alone.
Your husband has Parkinson's disease and dementia. These are not conditions that improve with time. They get worse with time.
Please do this exercise for yourself and I believe it will help. Write down the reasons why you made the hard decision to put your husband into the LTC facility. Now all those reasons are true and you did the right thing. Sure, he might have short periods of time when he's doing all right. Like when you brought him to your daughter's house for the holiday. That might even last a day or more.
It's 'Showtiming'. If you were to ask the facility how he was when he went back, they'd tell you a different story.
You made the right decision and cannot move him back home.
Am I sorry I brought him home? Yes and no. I would always have questioned whether it could have/would have worked. He mostly is lucid, just seems to lazy to get up even with PT. He came home from nursing home with bedsore on his tailbone; took several months to close and heal.
What I am trying to say is that there never seems to be a definitive answer. You will exhaust yourself rationalizing either way. Good luck. You will be in my thoughts.
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