The balance between giving your beloved directions and oversharing expectations is just another fulcrum of care. You never told me is a frequent complaint whether I did or not. I will plead guilty and mutter a oh I thought I mentioned and that old standby sorry. Tell him about an upcoming event or activity tooContinue reading “TMI”
Tag Archives: #day-in-the-life
Getting out together
I hate to admit it. When apparently healthy couples of a certain age stroll by hand in hand, I am envious. The recent outings facilitated by our new weekend aide take some of the sting of my jealousy away. I can get out with my guy. That’s a nice feeling. We both enjoy being out,Continue reading “Getting out together”
Down up up? Down? Up
Among those caring for the Lewy- afflicted, LBD is referred to as a roller-coaster. I hated those before embarking on our Lewy journey. As you can guess, I am not a fan of the wild ride now. Lewy Body Dementia is unpredictable. Lows can be followed by some highs. Or at least some regained ground.Continue reading “Down up up? Down? Up”
There’s a lot to be said
From pretty much day one of Burt’s symptoms, I looked to getting help. Initially, it was because I needed my time. I wanted to get 3 or 4 hours several times a week to get out. It seemed an existential need for me. In the parlance of our dementia communities, it’s deemed “self-care.” Some ofContinue reading “There’s a lot to be said”
Good news
For some good news
I have mentioned Burt’s enjoying people as a highlight of his disease. He has grown more outgoing over most of the course of his dementia. During the first phase of his recent dip, he stopped engaging as he had. Part of this is because he doesn’t recognize the neighbors as he used. Lately, he’s backContinue reading “For some good news”
Defiance
Burt is pretty much in his own world. As long as the hallucinations aren’t scary, I am told there’s no need for me to fret. Or medicate. We shall see. The multiple mes disturb and unnerve me. Other aspects are amusing. Burt tried to send me on an errand the other night. When I said,Continue reading “Defiance”
Mid night thoughts May 7th
It’s a pernicious disease that has outsmarted us both, and Burt and I are pretty smart. Lewy Body Dementia has made its wily way into our lives. I have been split into fragmented personalities some of them adored some abhorred others tolerated. Burt is never fully alone except when he dreams I have abandoned him.Continue reading “Mid night thoughts May 7th”
Spinning yarns
It’s far more relaxing to spin plans with Burt rather than struggle. Is it an effort? Creating some very peculiar scenarios can tax my imagination. It doesn’t try my patience as much as resisting his. Today, he’s both insistent that we take a train somewhere to get home and that I left him alone forContinue reading “Spinning yarns”
That’s just silly
Getting sillier is becoming a salvation. There’s some serious stuff going on. Of course there is. I need to rise to the occasion to combat the many ills that come with Lewy. I also need to find ways to smile and stay sane. If texting “Tony the tiger great” is an indication of the latter.Continue reading “That’s just silly”
this is our life 