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Joysuzie18 Asked February 2018

My husband has been in memory care for nearly 14 months. He has never stopped demanding to go home. Any advice?

He has days now that he’s too confused to make any demands. I could no longer keep either of us safe. So after 3 tough years with Parkinson’s and dementia I had to give up the care the man I promised, in sickness and in health I would care for. I have not been able to release my guilt even when I know with my disability I can’t take care of him. I feel my life is over too. I don’t want to live without him but I know I can’t have him back. At least my head knows. The devastation I feel is so overwhelming. I just can’t seem to get past it. Feel like I’m lost and freefalling. We are 71 years old. Thank you, Joy

Joysuzie18 Feb 2018
Thank you all so much for your wonderful words of encouragement.
I appreciate you taking the time to help me and you have. Bless you.

cdnreader Feb 2018
Dear Joy,

Sending you love and hugs. I know its hard but you are doing the very best you can for him. You needed to ensure his safety and well being and your own. Please know we are all here for you.

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talkey Feb 2018
Joy, my dad was high-functioning mentally when I placed him in memory care. But his Parkinson's had taken a toll. It was such a nice facility, and I thought he would be happier there than a SNF. He had a private room and bath with his own furniture in a beautiful new facility with low patient-staff ratio. I visited him every day, and he was never really happy there, tho I think he had some joy and cared for a few people there, and I too felt so very guilty. But his PD continued to progress, and I believe we were both safer letting the professionals take care of him. I'm so sorry you're going thru this.

Evermore99 Feb 2018
You are doing what is best for the both of you. Your husband needed more care than you could safely provide. He is clean, safe and fed. He has access to nurses and aides and they take care of him. What your husband is really looking for (by asking to go home) is a time and a place in their life where they were younger and they called the shots, hop in the car and whatever else. They could want to go back to childhood where they didn't have responsibilities or a lot of consequences and they thought they would be young forever. Happiness is a choice only he can make. Life is not all rainbows, glitter and unicorns, a lot of the time, it sucks and it's about the mundane day to day crap.

richamj Feb 2018
Kimber, what a wise answer. I agree wholeheartedly--in making sure he gets the care he needs, you are indeed taking care of him, as you promised. It sounds like you are grieving right now--even though he's still alive, you are grieving the loss of having the companionship of your spouse at home, the loss of the life you had together, the retirement you expected to have...and you are grieving on his behalf, that he is losing who he once was.

I wonder if there are support groups near you for caregivers? Support groups are an amazing way to have a safe space to share with others who are walking the same journey. Maybe there will be someone who had to place their loved one and can share what they learned... maybe you have some wisdom to share with others from what you have learned. Like exercise helps get our blood pumping through our bodies, support groups can help us "exercise" our emotions, to get them flowing again when we feel stuck and bogged down.

Another thing that might help is scheduling visits when there is a fun activity happening at his facility. Pleasant events can help couples feel close again, being with each other and doing something enjoyable. It might help distract him from demanding to go home, and give you time together that you both enjoy. Even if our loved ones aren't able to remember the good times, since they live so in the moment...if we can help them have more moments of joy, it helps us feel joy as well.

Kimber166 Feb 2018
Joy - you promised "in sickness and in health" you would care for him. You didn't give that up. YOU ARE FULFILLING YOUR PROMISE. You helped him get to where he needs to be to get the care he needs desperately. Your promise did not entail killing yourself to try to do something for him that you are not qualified to do. You would not perform open heart surgery on him - you would get him to a qualified professional. Same with his Parkinson's and dementia. You still visit, make sure he is getting the needed care, and still love him, and fulfilling your vows. I so hope you can understand and let go of the guilt. Bless you!

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