It's been a while. I wrangled with the idea of writing about this subject again. In depth, I mean. I know I've written a bit and some of you may remember that after a long struggle with Mom, my husband Bob has dementia too.
That's probably old news. But I've had quite a few requests from followers to write another daily (maybe daily) journal of dementia, this time with a spouse. Taking care of a parent with dementia was, for me, far different than it is taking care of my husband.
So, let's jump in.
Refresher info: Bob started "stalling out," as he called it, in 2016. After returning home from work, he would park in our circular driveway, sit in his truck with the radio blaring, the door open, and just stay there until I came out.
"What are you doing?"
"I don't know. I guess I just stalled out," he would say or some such like that.
You'd think I should have understood. Oh, he has it too. But I didn't because it manifested itself quite differently than my mom's. Mom's was all about paranoia and hallucinations. That's how someone with Alzheimer's acts. Alzheimer's falls under the larger dementia umbrella along with Lewy body, vascular, frontotemporal, Huntington's, and Parkinson's diseases.
Someone with Bob's frontotemporal dementia, acts more like they're forgetting their keys, where they are driving, names of friends, forgetting words. Bob forgot words. He would sit next to me and I'd be yammering away. Then, I'd ask him a question, expect an answer but none would come.
I got frustrated by him ignoring me. Until one day, he said...
"I'm answering you in my head."
"Well, I can't hear your thoughts," I said. Then, I realized, no, something was wrong.
It was only months since Mom died of Alzheimer's coupled with COPD. Everything seemed okay until it wasn't. Until, the neurologist sent Bob to a neuropsychologist who diagnosed him with Primary Progressive Aphasia (PPA). Aphasia is the loss of ability to understand or express speech. PPA, as suggested in its name "progressive" continues to worsen over the years until, there is absolutely no communication ability left in the brain.
That's where we are today, eight years later and Bob can no longer function without help. He cannot toilet himself, feed himself, drink from a cup on his own, he can't get out of bed by himself, nor can he walk alone. He cannot blow his nose or brush his teeth.
Basically, I'm Bob's service dog. It's a good job. I'm his loyal companion.
I promise I won't leave you hanging on this subject again. I know you care about me and Bob but you also may have questions about your own loved ones and, after realizing how many of you wanted me to write to this subject again, I feel a responsibility and, dare I say, obligation to keep these posts coming.
So, until tomorrow or perhaps the next day, my heart and prayers are with all of you. As they are with Bob and all the important people in my life.
God bless you all. ~Susan.