1
submitted 1 year ago* (last edited 1 year ago) by 108beads@lemm.ee to c/neurodegdissupport@lemmy.world

Thank you, ZenGrammy! I don't have the time or the tech chops, and was hoping someone would start a community like this. I'm a Reddit refugee who was active on r/Dementia, r/Alzheimers, r/Caregivers, etc. (Edit: and a handful of Discords, an Alz.org Zoom group… lots of support!)

My sweetie—I call her my "Beloved Dementor"—was misdiagnosed for a good decade with psych problems. She does have those (anxiety, depression), but PCP & therapists brushed off refereed medical journal articles I tried to show them, as well as the info that Alz runs in her bio-family.

She's only at roughly stage 4 cognitively. But the effort of masking for so many years, the Alz erosion of executive function (motivation, cause/effect reasoning), the personality reversal from outgoing to shrinking violet—made her decide to stay abed for several years. Lost muscle tone from that, plus Alz-related apraxia and a Parkinsonian tremor.

Inevitably she lost ability to walk, fell, and from ER went to a Roach Motel of a skilled nursing facility where she flunked out of rehab. Incontinence and reliance on a Hoyer lift make it impossible for me to adequately care for her at home—my arthritis and age (pushing 70), inaccessible house, lack of backup community if I fall ill, shortage of aides, and her self-imposed social outlets all point to "nope, not gonna work, at least not longterm."

She's still my sweetie of 26 years. I visit daily. &

Best resources: Alzheimer's Association (Alz.org), and the book The 36-Hour Day.

no comments (yet)
sorted by: hot top controversial new old
there doesn't seem to be anything here
this post was submitted on 23 Jun 2023
1 points (100.0% liked)

Neurodegenative Disease Support

0 readers
0 users here now

This community is a gathering place for all those affected by neurodegenerative diseases. Patients, family, friends and caregivers are welcome. Share info, ask questions, or vent about your day. Whatever you'd like to talk about, we're here to listen.

COMMUNITY RULES

We follow the Mastodon Code of Conduct in this community.

Please be kind and supportive as you interact with others.

Do not ask for or offer medical advice. This is a community for support and encouragement only.

PARTNERED COMMUNITIES

Chronic Pain

Fibromyalgia

Mental Health

TMJ

founded 1 year ago
MODERATORS