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.
I'm glad you're here. My mother spent so many years masking and denying her disease that in the end she was too tired to fight me on getting a diagnosis (finally) and all I could do for her was find a great nursing home. They only accept patients with Huntington's and ALS so they're really the best option around. I don't visit as much as I'd like to because I can't drive due to a stroke I had while caring for her (I hit the genetic lottery it seems) but she doesn't honestly know anymore how often it is and seems a bit bothered by the disruption in her routine when I do. I do my best. She still remembers me so far and our love is eternal.
I'm sorry your sweetie had to move away. It's such a hard decision to make but we do it for them.