How to deal with husband in nursing home who at times becomes totally lucid and wants to come home?

What happens, I think, is that we want a way to make this all "OK", and there is not one. This is painful. This shows our human limitations in the face of the reality of aging, loss after loss. Our limitations in dealing honestly with grief.
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.

Your husband doesn't have Alzheimer's. His dementia is closely associated with Parkinson's disease and it's called Dementia with Lewy body. This type of dementia is characterized by having fluctuations. It comes and goes. Also this type of dementa produces vivid visual hallucinations and delusions. Your husband's dementia has not gone away, it will come back again. Eventually when the disease becomes more advanced the periods o lucidity will become shorter. Do not bring him home permanently because he is not cured. His dementia is only taking a short break. The fact that he became agitated and struck a staff member when they tried to wash him, it showed that his mind is not well. You're doing the right thing by keeping him where he is. Do not feel guilty. Miracles do not exist.

Your husband is not "better" and unfortunately will only continue to get worse. If in fact your husband has Lewy Body dementia(which often goes hand and hand with Parkinson's)it is one of the more aggressive dementias, with devastating consequences.
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.

I also visit my husband each day. I explained that I was so sorry, but I was no longer able to keep him safe at our home. I repeated that until he finally seemed to accept it. Praying for you, Pamilton, as you walk through this hard path of grief and dread.

Don’t let guilt ruin the stability your husband has at the moment. I agree with others posting…just keep telling him it’s not safe at home because you can’t do everything he needs. Keep visiting and bringing treats. He will not get better. This disease doesn’t have “remission”.

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.

Same situation in February. I agreed to bring him home and hired help to bathe him and change bedding several times a week. He arrived home and refused to get out of bed. He had been urinary incontinent, now the same for bowel. He is mean, verbally abusive and foul mouthed.
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.

dear pamilton,

hug!!! :)

i'm sure there will be all sorts of replies.
i suppose, mostly in favor of keeping him in NH.

but the BEST WAY, is not a majority vote.
i mean any advice that anyone gives on this website --- it's not about whose advice is most popular.

perhaps sometimes popularity (of advice) is an indication of the right path...
but there are so many factors (regarding NH/facilities)...

...we all have different morals
...we all have different situations (some situations with LOs at home are totally impossible to keep up...sometimes an NH is SIMPLY NECESSARY).

also, even with the best of intentions from people (everyone/me) on this website, we might still direct you in the wrong direction.

YOU (and your husband) are the people who must live with whatever decision you make.

-----
i'm only giving my opinion.
YOU know all the facts. i don't.
and as said, sometimes a facility IS SIMPLY NECESSARY.

here's my opinion:

if possible, keep your husband home.

hire competent/trustworthy caregivers.
we had bad experiences with caregivers through agencies (thieves; uncaring). i found good private ones, through word of mouth.

your husband is right now:
lucid, not falling, not incontinent.

---
of course that can change again, and he can get worse.

---
it's only my opinion.
there will be many opinions.

my opinion is:
give him a chance to live at home again.

i'm sure he would rather have 10 wonderful days at home, than 10 miserable months in a facility. (in the sense, that i'm sure he would say, "put me back in NH, but give me at least 10 days, 1 month, X amount of time at home").

----

hugs!
as i said, there are many factors - you're the only one who knows the whole picture.
you know what's best to do.

pre-new-year hugs!! :)

He is ill with severe worsening problems and you cannot take care of him nor should you be expected to. It is impossible and your life will become hell. He is what he is and it will not get better. He must be placed for his safety and care. If he is lucid, naturally he wants to come home - he doesn't see his other side. Let the professionals handle these requests and explain it to him. He will rebel and won't remember but then he can't blame you. When they get like that, they do not belong at home.

Don't be fooled by a temporary period of lucidity with your DH's state of mind. If you are fooled by this, you'll take him back home and then he'll become agitated again and strike out at you, putting your safety in danger. Then what?

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.

The in house social worker will help you

My Papa also had Parkinson’s with Lewys Body Dementia. He was in a nursing home and got so much better. He badgered and badgered his doctor to let him go home, until the doctor finally agreed. Keep in mind, he lived alone and would not hear of having it any other way. He agreed we could check on him twice a day.

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.

One thing you could do would be to take advantage of your husband’s best lucid period, and use it to talk this through with him. Read him BeckyT’s answer, which is probably the most relevant for both of you. Talk through with him what happens to both of you if it happens to him too. He gets worse, you have to cope with something that you couldn’t cope with before (and is bad for your health and safety), you have a lot of work to find another placement that may not be as good as this, and then he will have the upheaval of placement all over again. If he is genuinely lucid, he will see the problem.

Perhaps see if there is a middle option that might be an incentive for him to back off a little. Perhaps the nursing home would agree to him coming home for a few days, while keeping his place. They may be unhappy because it could affect their Medicaid funding while he is away, but you might be able to cover some of the loss for a short time. Or they might be able to plan to use his bed for a week or two’s respite for someone else. Talking to him about these options might help to defuse the situation – another alternative to ‘yes when the doctor recommends it’.

Excursions might help too, even as another ‘trial run’ promise. If the NH has an AL facility, he might be allowed to go with an excursion they are organising. Once again, it might cost, but a ‘trial’ is a lot easier than trying to fund AL.

If he can’t understand the problem here, he is not genuinely lucid. It must all be very difficult for him, as well as for you, but see if any of these suggestions could be worthwhile – if only as a delaying tactic. Best wishes, Margaret

Don’t take him home because he’ll refuse to return to SNF. He definitely will get worse & his lucid moments will be fewer & fewer. He’s going to need help with transferring & toileting…& diaper changing. He had double whammy with dementia & Parkinson’s!!! Don’t expect him to get better & improve. That’s fantasy land! Visit him..but don’t take him home..therefore losing his placement. When he gets worse…and he will…you won’t be able to get placement for him. & if you’re thinking of taking him out in favor of ALF, they will evict him when his behavior gets worse & recommend SNF. Hugs 🤗

AlvaDeer is right. We all want to find a way to make it ok, but there isn't one.
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.

I’m in the same situation and I can tell you it will not get better. It will revert back even worse. Keep visiting him there where he can get professional care.

Pamilton: Do not be fooled by his temporary period of lucidity, for that's what it is. Absolutely do not bring him home as you would regret it.

Do not bring him home.....He's playing on your emotions. Get the social worker involved and see if she can help and the activities leader involved, physical therapist, andbody who works there to help you out. You have hard at the beginning, but in the long run it will be a blessing!

The fact that he seems to be "doing so well" is testament to the good care he is receiving at the SNF. And that level of care is something you could not and can never provide for him at home. SNF have the staff and resources to help your husband. You cannot replicate that at home. His needs were already unmanageable for you at home. And they are only going to increase.

You visit him daily and answering his constant calls is doing neither of you any good. If there's an emergency, the SNF will call you. Constant calls is a sign that he is not "totally lucid".

Remember that Parkinson's disease is progressive. He will have moments where he is doing better. Overall, he will continue to decline. Enjoy the good moments together. Tell him how much you enjoy spending time together, but that you can not care for him at home anymore.

@Formama,

Yes, those lucid moments are the worst and yet best cause it reminds us of why we are still trying to stick it out and be there for them no matter what in whatever way we are so able.

We just put dad in an ALF before christmas. There was so much anger there on my part because it was his decisions and choices that put us in this situation. WET brain. So many holidays stolen. But now its something that is not in any of our control to fix. All I can do is try and keep him safe and as healthy as possible during this downward grade of his life. :( SUCKS!

So sad your dealing with this. He is in the best place as his care needs will increase. Be honest and say you cannot give him the care at home he needs anymore. Tell him it’s doctors orders.

Stop feeling guilty you have done your best. Dementia robs us of the people we know and love. I would speak with a manager at the facility for reassurance. They are experienced and will give you an honest answer.

keep strong and know you have done your best. X

Lewy body dementia is the one that accompanies Parkinsonian symptoms. It fluctuates quite a bit, is often not responsive to the common medications used for anxiety/agitation, and increasing paranoia develops as the brain deteriorates. He is doing better at the SNF with the structure and the presence of other people and activity around him. There is more than 1 helper person in a 24 hour period - so care staff don't get worn down like you do with his needs. And behavior towards strangers can be better than how we treat family, sometimes.
I'd encourage staying at the SNF - he might be ok for a time in assisted living but they have NO medical care and no training to deal with someone who resists care, etc.
I'd consider decreasing your daily visits - and when he starts to push about going home, accusing you of putting him in prison, etc. - tell him, "I'm sorry, dear. that is not true. You have health problems and need care that I can't provide. The answer is no." Then, when he continues the question or complaint, 'I'm sorry, dear. The answer is no." And then, "I'm sorry. Try to divert him to another topic or interest or go for a 'walk' in the hall or whatever....and if he still persists 'Well, I need to go along. I'll come see you soon, I love you". Choose your own words...ad keep your tone neutral. This strategy lets you set the boundary and explain once why he is there and needs to stay there. Then you decrease what you say. He won't like it, but you focus on the main point. And then don't argue or get emotional, just say goodbye and leave.
(Even if you need to duck into the nearest ladies room and cry, or cry in the car. That's healthy).
Maybe the staff can help reduce his frequent calls to you...and if you are able to not answer, it will allow staff to help focus his attention on something around him. They are good at 'oh, she must have gone to beauty parlor" or a host of other "little fibs" to calm him.
This is a heckuva hard road.