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My very intelligent 70 year old spouse has had Parkinson’s and increasing dementia. He was first diagnosed at age 40 and he has aggressively done everything possible to treat and live and compensate for the disease. He had DBS and many medication adjustments. Overseen by his PCP, his neurologist, and his neuro urologist. The situation at home had been reaching the point where I could no longer manage the falls and fecal and urine incontinence and especially the impulse control disorder. I could not leave him alone because I never knew what he might do. After a hospitalization for Orthostatic Hypotension he was sent for in patient rehab. I decided to make it a permanent move since I had reached the point of not being able to manage him and his behaviors. He has been there now for 2 months and moved to a secure unit because he tried to go to another part of the building. He is walking better than ever and his posture is upright for the first time in years. The incontinence has disappeared and he is wearing regular underwear. But most significant is his mental clarity. He says every day I visit that he doesn’t belong there and wants to come home. This is painful to hear because he appears to be doing so much better than he did at home. I feel guilty that I don’t want to take him home. How do I cope with my guilt ridden daily visits and how to deal with his inquiries about not belonging there? I know that with his disease there are good days and bad days but his good days are now all the time! Medicaid has been applied for and I don’t want to interfere with that process either. Advice?

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My dad lived in a memory care facility for 3 years. When I retired from my career, I still wanted to work somewhere so I took a job as a receptionist at a skilled care facility. I thought I'd have a lot to share to help families because of my experiences. But I actually got so much more help for myself. The eradication of guilt. My dad had Lewey Body dementia and he used to beg us to take him home every time we came to visit. We redirected him and did okay, but there was a lot of guilt. The staff at the facility where he lived told me he'd be okay and that he only acted like this when we visited but I thought they were just trying to make me feel better. Soon after joining the SCF staff, I learned that they were telling me the truth. I would see residents so happy during the day. They'd participate in activities and be friendly and content. Even the residents who stayed in their rooms were content. No one was crying for their family or asking to go home. They had a routine and received great care. For the most part, it was like a big extended family or gathering of friends. But often when a resident's family would show up it's like the resident flipped a switch and would start in on the pleading to go home. The family would leave, the switch would flip again and they'd forget all about leaving. That experience opened up my eyes and I learned that what I did for my dad was the best thing and I was finally freed from that guilt. I'm so sorry you and your spouse have to deal with this. But I really think you are doing the right thing and I hope the thought that he may be fine when you are not there helps a bit.
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Reply to KateyG
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NightHeron Jan 22, 2022
Really interesting perspective. Thank you for sharing.
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You have no reason to feel guilty. (Oh, how I hate that word we misuse)
It sounds like you made a very good decision and because of that decision he is doing better. Be thankful for that.
When he wants to come home you can tell him that you can not SAFELY care for him at home.
Remind him that he is doing better because he has people around him all day that help keep him safe. At home there is 1 person and you can not do the job of 5,10, 20 people.
And for yourself...
He will continue to decline, he will get worse and because of that he would not be safe at home. With any dementia you do not know how long the "good days" will last.
Please remove the "guilt" from your mind. You have helped and dealt with this for 30 years. You have been a direct caregiver. Let yourself be a loving spouse and let others do the direct care. you have plenty do do as a Wife, and as an advocate.
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Reply to Grandma1954
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The irony is that your loved one has improved so much because of there are trained caregivers around the clock to help him and keep him safe. Urinary/fecal incontinence or impulsive unsafe behaviors are 2 key reasons that lead families to find a facility care setting for their loved one. You were struggling with both of them.
If there is a social worker at the facility, see if that person can arrange for some mental health counseling for him, at the facility. This may be limited by insurance, but he might benefit from a chance to talk about his fears/feelings about illness/placement, etc.
Sometimes wanting to go home is not just about the physical place...but the healthy body, the capable competent adult identity, etc.
Look around in your area for support groups for caregivers, especially one for spouses. Nobody talks much about this but you are not alone.
Telling him 'no, I can't talk about that issue today' the first time he raises the subject. Tell him "no, not right now" when he asks to go home again....and then when he asks the 3rd time - try to ignore the question and just go to a neutral topic, preferably something that will be visual and distracting....
and if none of this works and he is really stuck on the issue...say "Well I have to go along now, I'll come back another day...."
Of course, you. need to do your best to leave your guilt and grief in the parking lot...and you may howl and cry when you get back to the car. But this calm refusal to engage often helps decrease the frequency and persistence of the question.
You have made the right choice for him, by the way. He can't understand why he needs to be there, and he may not ever express that he is glad he is there..it's the whole situation that he hates (as do you) and not just the location.
You know he will deteriorate quickly at home..and it will be much harder to get him back into a safe setting....
Are there facility activities you can do together? Are there other friends or family who can go visit with him? Often having another guy to talk with helps, as care staffs are mostly women and the majority of residents are women.
I feel for you. This is a hard place to be.
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Reply to Clairesmum
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It's the same old story; the loved one is unmanageable at home, goes into a facility and gets 'better' precisely BECAUSE he's in managed care, ON a schedule, being fed and medicated on a schedule daily, being toileted on a schedule, etc etc. Then they look & feel better and start begging to come home b/c HEY, I'm CURED! Then the loved one gets guilty & starts second guessing her choice to place him to begin with. "What was I thinking? Silly me! He wasn't 'that bad' I must've been out of my mind thinking his double incontinence & wandering out of the house was a problem! Let me go take him home immediately where life will be wonderful all the time!"

Then the nightmare gets going in full force once again because the loved one is back to being even WORSE than he was before you placed him. Why? Because his strict managed schedule is now thrown off and so is HE.

Leave DH right where he is or YOU will be writing that story mentioned above. Cut down on your visits a bit until you're able to manage your guilt and/or until you can come up with a response to his question that will satisfy BOTH of you, once and for all. Such as, "When your doctor tells you that you are in good enough health to return home, that is when we will discuss it dear." Let him know that you did what is in HIS best interest by placing him, and that it hurts YOU too that you can't be together 24/7, but it's best for him that he stays where he is. End of subject. If he can't accept that answer, then you'll have to back off of the visits a bit b/c it's taking too big a toll on you and the QUALITY of those visits which are intended to be a comfort and not a horrible thing to dread.

Remember that the DISEASE is to blame here; not him, not you, not the SNF, not the food at the SNF or the doctor or the medicine. The Disease. If you could change things, you certainly would but you can't. Such is life on life's terms and that's sometimes a bitter pill to swallow for ALL of us as we age. Sad but true.

Wishing you the best of luck with all you have on your plate.
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Reply to lealonnie1
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My Papa also had Parkinson’s and dementia, and had to admitted to long term care when he became too weak to function at home. Within a month, it was like he was a new man! He strolled down the hall (pushing his walker), gained much needed weight, and his clarity was much improved.

His doctor said there were two reasons: he was getting medications that were overseen by the nursing staff, and he had stability and routine that he lacked at home. And he talked the doctor into letting him go home!

He started the same slow slide downhill. He was back at the Care Center for good about 9 months later, in worse shape than the first admit. And angrier than before.

I just wanted to tell his story to give you something to compare with your situation.

P.S. When he started arguing to go home again, his doctor said to tell him “The medical professionals say you’re not ready yet”. That way he doesn’t know who to blame.
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Reply to BeckyT
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It is hard to understand how come in this facility his incontinence from both ends is gone now that he is in a facility. It's not like his dementia is cured so why the turnaround?
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Reply to sp19690
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MJ1929 Jan 22, 2022
Likely because they have him on a strict bathroom schedule around the clock.
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Pamilton: Imho, you may have answered your own question in part where you state "I know that with his disease there are good days and bad days" even though you go on to state "his good days are now all the time." Why is this you wonder? It is because he is receiving excellent care by trained medical professionals. That, in no way, doesn't mean that you weren't a STELLAR caregiver. However, you are only one person, a solo individual. I hope that impression is quite clear to you. Love and hugs sent.
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Reply to Llamalover47
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If in fact he is as mentally clear as you say, he will need to be told at some point that out of appreciation for his present wellbeing he MUST stay in the care environment that is able to serve him best.

That was NOT available in his “home”. It IS available where he is RIGHT NOW.

This is not a happy ending for either of you, but you have made what has proven to be a very good decision for him, even though it is Not the decision he wants.

As you know, and he may be choosing to ignore, some forms of Parkinson’s can turn on a dime. If helpful in his case, tell him he needs an extended period of stability before his specialists can discuss his future with him. Don’t mention time frames leave that open ended and “We’ll see what the doctor says…….”

Remind yourself as often as you need to “it’s not perfect, but it’s the best I can arrange for him”.
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Reply to AnnReid
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WHAT A LOVE story! What you are NOT telling us hits my heart more than what you said. Amazing love the two of you have for each other. You feel torn between WANTING him to be well and healed, yet KNOWING if he came back home, his condition would deteriorate. How HORRIBLY SAD. Others have mentioned outings, etc. As a retired teacher, I would suggest a reward system of some sort. But, first, when he mentions it, you can EMPATHIZE with him. Don't be angry. Let him know how much you love him, and hope that the memories you have together will lift his spirits. Let him know what a GOOD LIFE he has lived and how much GOOD he has done in this life, and now he is WORTH IT to have round the clock care as needed. Tell him if and when his doctors say he is HEALED TOTALLY and will NOT deteriorate again, that coming home WILL be an option. Either way, you will LOVE him forever and your love is strong enough to survive the short separations. Now for the rewards: Make little "gift" cards of things you can afford or MAKE by yourself as prizes. Each time you go there to see him, hug and kiss him and do whatever else you are allowed to do in privacy with him, and let him choose a gift card for the next time you come. Keep them turned over so he can't see what they say. I hope you can work it out so he doesn't feel abandoned by you and will accept that he has to stay until he is pronounced healed. (Don't worry, doctors will never say that.) Good luck. Love, Karen Bell in Riverside, CA, and Karen Kleinman on Facebook.
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Reply to karenchaya
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Having guilty because he is getting the professional care that has improved his life is misplaced. It would actually be tragic to let him return and regress. Just visit and spend as much time as you can with him. But it's clearly the best place for him.
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