Just so sad. How do you cope?

Jazzma · April 11

My husband of 33 years went into memory care 2 months ago following hospitalization. He was diagnosed with Alzheimer's 5 years ago, and had been living at home since.

He's still lucid sometimes, then off in his own world. I've brought him home several time for multi-day stays — and while it's very comforting to have him close, the loss of sleep and need for constant care is exhausting.

I have never been so sad. I figure it will help to share with others who have been/are in the same situation. It's hard to explain to friends and relatives who assure me that it's best for him to be in professional care, and that i should be happy for the reprieve. I'm devastated. In some ways it's worse than if he had died, because he comes and goes. How do you manage? My doctor prescribed antidepressants, I visit him most days, I call close friends and family. It still tears my heart apart. Maybe it's just a matter of time?

Thanks for your thoughts.

M1 · April 11

jazzma I’m so sorry. I’ve been doing it for two years now and I wish I could say it gets easier. I have never tried taking my partner out of MC other than for one or two doctors appointments; I’d have a hard time getting her to go back. I wonder if that is making it harder on yourself. Tough call there.

CStrope · April 12

DH has been at MC just 2 weeks now. He seems to have adjusted quite well, but he has FTD not ALZ, so it a little bit of a different beast. With the FTD, he still retains a lot of his long time memory, so even though he isn't able to call me by name, he recognizes me (and our kids) when we visit. Today his best friend and brother came to visit him, and he totally recognized them both. Sometimes I wonder if he understands more than we think, but just can't verbalize it. Some days I think it's harder on me than it is on him, that he's there.

Quilting brings calm · April 12

It almost sounds as if you are using the MC for respite care. Several multi night trips home within 60 days( two months). I wonder if you are not giving either of you adequate time to settle into this new phase of your marriage and living arrangement.

I suggest slightly fewer visits there, replaced by fun activities for you by yourself or with friends. A movie, lunch, a drive to a town you haven’t visited, and so forth. Fewer visits home for him because you are just exhausting yourself. You have to stop feeling guilty because you aren’t sick and he is. It’s ok if you do fun things even though he can’t.

Pdxnewbie · April 12

Jazzma - you have probably made the right move based on your description. I brought my wife home from memory care after 12 days as she was getting worse each day when I visited. She was very aware that those around her were 'crazy' and it made me aware of something the memory care administrator told us --' if someone knows they are in memory care they do not belong there.'

Being at home with the right level of home health assistance has worked out well and she has stabilized for now. I know that each situation is different and always hard for us to know what is best.

ghphotog · April 12

I used to dream of being on my own again whether that meant MC or passing. I just wanted it to be over for both of us. I placed her in MC just a couple of months ago and I found out that I don't feel as relieved as I thought I would. It's even more heartbreaking on one hand but very quiet now on the other. I hate that she looks everywhere for me and can't find me. When I visit she cries saying she searched and searched for me but couldn't find me and that is heartbreaking. However, even though I'm still tied to her as her husband and advocate, adovocate meaning that I let the MC know when things are not right, she's been in dirty pull ups for too long or the food is so horrible as to almost not be edible, or her laundry is all mixed up or not washed I let them know. . . otherwhise they do a good job of keeping her safe, I'm still not free. I can't go anywhere very far as I always need to be near in case of an emergency.
I guess I'm just saying that MC is not the magic bullet of freedom for myself I thought it would be for so many years as a fulltime caregiver be but as you have said, if I brought her home I would never be able to sleep as she needs tending to 24/7.

jfkoc · April 12

Perhaps placement is just better. It does not fix much.

Jazzma · April 12

https://alzconnected.org/discussion/comment/205472#Comment_205472

That's profound. I expected it to 'fix' my life and make his better. I guess it's done that for him.

Jazzma · April 12

Thank you all for your comments. As always your insights help me see things in a different way. I am holding on to him tightly in the hope that he may be able to come back home, and it's making things harder for both of us. We have an appointment with a neurologist this coming week, which I hope will give us an idea of whether his sundowning and sleep disruptions can be addressed medically. If they can, I may give it a try. His current facility is extremely expensive and not particularly responsive to my concerns — their pharmacy even re-wrote the doctor's orders, so that rather than tapering him off Seroquel they could continue giving it to him. He's on a wait list for a place that is closer, less expensive, locally owned and highly recommended.

Just so sad. How do you cope?

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