Resources for non-caregiver family members
August 22, 2021 6:33 PM   Subscribe

My mom has Alzheimer’s and has been in an assisted living community since shortly after my dad’s death 2 months ago. It’s the best place for her and I visit her, but she has good days and bad days there. I’m looking for resources to help me cope with all this. Everything I’m seeing for family members is for caregivers. That’s not me. I don’t need help finding adaptive devices, respite care, etc. But I’m still dealing with grief, sadness, guilt, exhaustion… Do you have ideas for resources for this situation?
posted by bookmammal to Health & Fitness (5 answers total) 9 users marked this as a favorite
Ros Chast’s memoir “Can’t We Talk About Something More Pleasant” helped me feel better while coping with my dad shifting into skilled care. It’s more about being a younger family member at this stage of life for both of you.
posted by childofTethys at 7:19 PM on August 22, 2021 [3 favorites]

First off -- thank you for showing up for a vulnerable family member in their time of need. It's a huge gift, a gift that you're not only giving your mother but also to yourself, in knowing that you are a stand-up citizen. It's a good mirror, showing you in a very good light.

I had to show up for a family member, a sister. There were others in my family who could have done it except not really -- I had time, some cash, the knowledge of how to enter into situations such as this, the courage to show up. I got support from all of my family members but only one really got it, she knew what I was doing and how deep I was into it and she supported me all the way through. Her love was just great, though she was a thousand miles away I was able to lean deeply into her emotional intelligence, her love.

And I had the support of my psychotherapist, back here in Austin. We'd arranged telephone visits. It was really, really helpful -- she knew me inside out, knew also the situation I was in, and she was capable in that world, thus a real bulwark to lean back into -- as with my supportive sister, I didn't need to explain anything, she got it.

Also. Through being broken by alcoholism, the gift that came from that is that I ended up tapped into support anywhere I go, by which I mean 12 step meetings. And not just AA but also AlAnon, which is for friends and loved ones of alcoholics and/or addicts; AlAnon a good fit for dealing with familial situations. IMO;YMMV. I know that not everyone fits in a 12 step chair, for me it's been great these long years, and, as I said, I have pretty much instant support everywhere I go.

I suspect that there is likely online support in these COVID days, Zoom meeting et cet. Hopefully someone will show up here in this thread with input on that. I saw my shrink a few days ago online, I've been to any number of meetings of whatever type online, I know that for many people it's too synthetic but for me it's a good thing, not to mention "any port in a storm."

My father began falling into dementia in the last year of his life, progressively worse each month. It was heart-breaking to hear his pain and fear when separated from my mother; they'd been married over 60 years, he just could not understand why he couldn't be with her. His physical health tailed, he fell and broke a hip, and in a couple of weeks he was gone.

What was really surprising -- amazing, morelike, to me -- is that in prayer he was lucid, he was present, he prayed for peace for all the people in such trouble because of hurricane Katrina, prayed for his children, prayed for all in his life. I've never heard of another person having this type of experience -- he truly was cognizant, when he was in prayer. Word got passed around, myself and my siblings -- you want to spend some time with Dad, well, pray with him. I'm not religious but I've had enough experience than to say that there's nothing larger going on.

Anyways. Sorry for the diversion there, it was a pretty interesting piece, to me, to us. Other than that, the whole thing hurt, and hurt bad. So I say to you, again: Thank you for showing up for your mother.
posted by dancestoblue at 8:24 PM on August 22, 2021 [2 favorites]

Look for Alzheimer's support groups. While you aren't a direct caregiver, you are still dealing with a lot. If you can't find a group, you might consider a few therapy sessions to help get your feet back under you.
posted by jenquat at 8:26 PM on August 22, 2021 [2 favorites]

Pretty much anything by Teepa Snow.

Also see if your local dementia organisation has any learning opportunities available. Often there will be courses for loved ones, or even virtual reality experiences that will help you understand how a person with dementia perceives the world. Most types of dementia involve specific visual and perceptual changes which actually explain a lot of the changed behaviours; once you understand these, you can adjust your own behaviour and the person’s environment to meet their needs.

You could also learn about Montessori approaches to dementia - I know you’re not providing direct care, but this could help you find ways to connect more meaningfully during visits. Basically, focus on the person’s past strengths and interests, and enable them to do useful things, to the extent that they are able. Bringing in an object that they would recognise and asking for their “help” with it can be a good start.
posted by embrangled at 10:44 PM on August 22, 2021 [1 favorite]

I'm so sorry for what you're going through with your mom. Caregiving is so much more than showers and medicine and adaptive equipment. You would be 100% welcome in an Alzheimer's caregiver support group as the family member of someone living in an assisted living. Besides the resources above, I'd also encourage you to look at this Caregiver Health page.
posted by assenav at 10:18 AM on August 23, 2021

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