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I watch him get more depressed and hate myself for bringing this job on him...

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Annie, I am sorry for the circumstances that the two of you are in. If I were in your position, with a disease like PD, I would want the best for my partner. Caregiving is very emotional and difficult work. It effects the caregivers health as well.

What would happen to you if something were to happen to him? Part of his job is to care for himself; part of your job is to also take care of him. He needs help or he won't be able to care for you. Do you want that for him?

If agency care cannot be brought into the home to give him at least a few hours each day, how much care could be obtained. Is it time to consider a facility close by so he can see you daily as a loving husband? Is he afraid of the financial devastation this could cause at this stage in his life? Have you met with an elder law attorney to learn about Medicaid and how prevention of spousal impoverishment would help ease the financial impact?

Have you talked about facility living? Figure out what your wishes for yourself and he are. Openly discuss the prospect of being willing to move and when. You will both be much happier when you both take care of yourselves and each other.
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Reply to gladimhere
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You did not cause this for yourself or him. Does he have time for himself? Do you have time to yourself?

Is there additional help from time to time? Would that make you feel better? I am not sure that I understand your circumstances. Can you share a bit more please? Thanks.

I hope things get better for you soon. Start working on a plan if you need to.
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There is not much more that can be added to Ahmijoy's caregiving testimony, but I am wondering (respectfully) why do people wait to consider being physically depleted and over being mentally/emotionally depleted before transitioning into a different living situation with alternate care help? I do understand how profound a decision this transition is in peoples' lives...
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DollyMe Oct 25, 2019
I agree, one knows it has to happen why wait?
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You say on your profile page that you are caring for your husband. Is he caring for you? You have Parkinson’s?

I care for my husband who is mostly bedridden. He doesn’t say it, but I know, after 45 years of marriage, that this is not the retirement life we wanted or expected. He always spoke of traveling out West, but at this point we cannot even go up the street to Bob Evans. He knows this and I know this. We don’t dwell on it.

From my own experience with caregiving, I can only offer my advice as to how I “feel and deal”. Do all you can possibly do for yourself. Accept the help of home healthcare aides if they’re offered to you. Everyone has bad days, physically and mentally. But, during a cloudy and rainy day recently, my husband and I found ourselves laughing hysterically over a television show. It was a special moment; unplanned but so enjoyable. Be amenable to things he wants to do. Don’t force him to go out if he doesn’t want to. I’m not interested in going out just to go out. I’d rather sit in my beat up old recliner and read...or nap. But, make sure he takes care of himself by visiting his own doctor at least yearly.

When the time comes that he can no longer care for you, discuss going to a facility if that’s an option. No one dances and does cartwheels down the middle of the street over having to leave home, but when it becomes necessary, accept it with grace and cooperation.

Sending you and your husband much understanding and wishes for peace.
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NeedHelpWithMom Oct 26, 2019
Wonderful answer.
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