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?
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.
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.
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.
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.
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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