Mom was diagnosed with Alzheimer’s, but pcp says it’s more like frontotemporal or atypical dementia. Her memory is still pretty good, but she has other significant deficits that severely impact her ability to live alone: frequent falls, very poor judgment, daily dual incontinence, poor visual recognition, confabulation, anosognosia, apathy, binge eating, severe ADHD like symptoms, decreased mobility: shuffling, leaning forward, difficulty coordinating lower extremities with pain/weakness, unable to sit up straight without leaning. She’ll have several weeks where things are rough, barely manageable, but then she’ll suddenly seem ok, better, no falls etc…and it lasts for a week or so, but then things go back to being super rough. Is this typical???
My dad’s neurologist said his brain scan showed atrophy consistent with Alzheimer’s, vascular dementia, and FTD but based on his symptoms, formal diagnosis and treatment was for FTD. He definitely had patterns of a series of bad days or weeks followed by better days, up until his final couple of weeks where it was all decline. Sometimes he would decline, then go back to previous baseline for a while before declining again. It got tough to distinguish the dementia declines from the physical declines in his case.
I think of the deteriorating brain pathways like a deteriorating city street system. You can “reroute” to avoid a damaged road but as more and more roads get damaged, eventually you can’t get to certain areas at all any more. It’s sad to witness.
The psychosis symptoms are almost completely gone now. So much so, that her facility moved her from the memory care wing into assisted living. The way I understand it, her brain has probably lost the ability to manufacture a big delusion and build on it. She "loses the thread".
She began this whole journey 9 years ago with visual, auditory, and tactile hallucinations, then went crazy with scary delusions for 4 or 5 years on-and-off. Cursing, saying cruel vulgar things, walking down the highway, running away from murderers... she even fainted and broke her neck. It was a "hangman's fracture" and she survived!
It was the wild west around here, and I thought I was going to be committed along with her. During the short time that I lived with her she would keep me awake all night.
Nowadays she's fairly quiet. When she sees a car, she doesn't yell "That's Mike! He's coming to shoot me!" She forgets that I'm coming to help her shower every 3 days. She forgets dinner. She tries to put on her Depends upside-down. Her moods are still understandably grouchy.
So yes, it definitely changes. During the middle-years her symptoms seemed to be bad for 3 or 4 months, then pretty good for one month, then bad for a few weeks, then tolerable for 3 months...
I never knew what to expect. Reading about the "stages" didn't help me very much. Amazingly, she only has urinary incontinence two or three times a month.
I still can't guess if she has 5 more months or ten more years.
I feel for you and I understand! 💜
There is no such thing as "typical" when you're dealing with the horrific disease of dementia, and yes there will be good days and bad days, so enjoy the good days when they come as they'll be fewer and farther apart as the disease progresses.
In the final 14 months of her life, there were at least five times when she slept all day and night and basically was unconscious. The first time this happened, we thought, "This is it! Mom is going to die soon." It wasn't and she didn't. Initially, I found these episodes to be very stressful. Once I accepted that mom's course was going to be down, up, down, up, and so on, although I remained sad for her, I stopped feeling as though I had to respond in a certain way.
Having hospice services for your mom is a great idea. My mom received palliative care services for a year or so and then hospice services until she died. Once the palliative care and hospice care staff got to know mom, they were able to identify what was "normal" for her and help us decide what to do.
But even the hospice care staff couldn't predict everything exactly. At the end, they told us that mom was dying and that they would let us know when they thought death was imminent, i.e., that it was time to call the relatives so they could gather if they wanted to be with her when she died. My sister, as usual, was there every day. I saw mom on Saturday and the following Monday. Tuesday, the hospice care nurse visited mom and said she'd be back to see her again in a few days. Mom died very early Wednesday morning.