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He's not happy cause were not together. He's been there a yr and with the pandemic its worse. He's on anti psycotic meds that help but he knows just what to say to stress me out. It's so upsetting he's there and I'm not there. He's very strong willed and keeps saying he doesn't want to be there. Sometimes I can't sleep after talking with him. It's so depressing. I took care of him for so long when he really needed to be in long term. He's had parkinsons for 20 yrs. It has taken me a whole yr to start to relax a bit
I start to feel ok then he starts being upset and demanding and I'm upset all over again.

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I’m so sorry that you are struggling with this situation. Take comfort that you did the right thing by placing him in a facility.

It seems like logically you know that he is where he is supposed to be but emotionally you are dealing with a certain amount of guilt.

My mom has Parkinson’s disease so I completely understand how challenging it is. My mom doesn’t have dementia. You have a greater challenge on your hands.

You say that he is on meds. Do you think his meds need adjusting?

Have you spoken to anyone about your emotions? Reaching out to this forum is a great place to start. I hope you find connections with others.

If you feel as if you need more and would like to speak to a professional therapist then don’t hesitate to reach out. I have gone to a therapist in the past during my caregiver days and it helped enormously.

Wishing you and your husband all the best.
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Just to make a point....dementia and psychosis is not an "inevitable" outcome of Parkinson's. It happens, but not to everyone.
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NeedHelpWithMom Nov 2020
Absolutely correct. My mom has Parkinson’s disease without dementia. Some people experience dementia, some don’t.

It is certainly more difficult for the OP that has a husband who has Parkinson’s disease with dementia.
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Sure he does not want to be there. I am sure he wants to be with you.
Sure you can't sleep and it is depressing, I am sure you want to be with him.
BUT...
He is safer where he is. You are safer where he is.
When he calls you tell him that he is safe. You love him and you want to keep him safe.
If he starts to get demanding on the phone tell him that you have to go, you love him and hang up. Do not let him get going with the guilt and anger. Just say I love you, good bye and hang up. If the phone rings again and it is him don't answer. Either decline the call or let it go to voicemail. (don't listen to the voicemail because it will probably be a rant)

And a bit off subject although connected. Have you talked to your doctor about your frustration, anxiety about all this? Talking with a therapist might help you learn ways deal with the way he "pushes your buttons". (and he knows how to do it you have been together a LONG time.)
I am sure part of what you are feeling when you get off the phone with his is that nasty word....guilt....
You can not let that reside in your head.
Take care of YOU
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Yup Geaton; same as I say!
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When did he go in the nursing home? Reduce the number of times you contact him (or answer his calls) so that you don't keep subjecting yourself to his verbal and emotional abuse. I don't blame him for being unhappy but there are no other options and I'm hoping you don't feel guilty. Surely he had 2 decades to come to grips with the inevitable outcome of his Parkinsons. That's on him. Some of his anger may be directly caused by his PD. Can you talk to the NH's doctor to see about meds that might help his anger/depression? He is not in control of you...you are in control of you. You don't have to keep re-explaining the reason he's in the NH. When you do choose to talk to him if he keeps up the anger/guilting either keep changing the subject to something happy and positive or just hang up. May you gain peace in your heart that you've done the right thing -- the only thing -- that works for both of you.
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geddyupgo Nov 2020
great advice Geaton
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