This is a horrid disease. I believe all dementias are damnable and heartbreaking. Lewy, however, seems to offer behavioral twists and emotional wrenches that make it that much more accursed. So, while all dementias are a burden on sufferer and carer, this is the one we’ve got. Burt has quirks that predate his illness. HeContinue reading “In free fall”
Author Archives: therealtamara
Should’ve
When you came home from a walk and said you were lost on 5th Avenue, I was worried. When you told me you had experienced double vision, I worried again. I should have asked you how you felt. Your worry was unspoken but deeply felt. I should have said I’m worried, but you matter. IfContinue reading “Should’ve”
Aggression
“So,” she asked, trying to put it tactfully. “Is Burt ever, how do I say it, does he lash out?” Oh, yes, that famous Lewy Body aggressivity. It’s why an agency felt they had to deny services. Burt is, as I like to say, performatively belligerent. Of course, he is, but he does lash out.Continue reading “Aggression”
Do as I say…
Out of desperation over difficult mornings, I switched morning meds to early afternoon. I had reservations about this choice but got the approval of his doctors. At the time of my decision, Burt was fighting taking his pills in the a.m. and sleeping late. I needed to get out of the house for my dailyContinue reading “Do as I say…”
Perplexing
T-shirts with slogans have sprung up to agitate my Burt. It seems to have originated with a recently acquired resentment of my gym. I love my logoed gear! Burt told me a wild story about a woman (they always look just like me) who was wearing the shirt (he ran his fingers over the writingContinue reading “Perplexing”
The fall
I pride myself in pulling no punches when I share our day to day. So, how did I really feel when I got the call from the aide. It’s very scary hearing of a fall. “If it were a broken bone or if it required a trip to the ER,” my mind raced with theContinue reading “The fall”
Rx for saving
Not really part of my assignment, but I think this might be helpful. I have had great luck in saving on Burt’s prescriptions with Single Care. It’s an app. Or they will send you a savings card. The dollar amounts have been impressive enough for me to want to pass this on.
Tumble and fall
Burt is okay after taking a tumble this afternoon. He was with his caregiver, who called me and EMS. His aide said he kind of went down as she was trying to make the seat of his walker accessible to him. We got great EMTs whom Burt attacked and abused. They checked him out andContinue reading “Tumble and fall”
Decisions
As this disease progresses, the caregiver is obliged to make decisions for her beloved pwd. Mine lost most of his executive function with the first blush of his illness. Nonetheless, he could participate in some decisions I made on his behalf. He refused all medications in the beginning. I felt it was his right. HeContinue reading “Decisions”
Signage
Burt is very confused these days, questioning where he is and where he lives. My solution had a two-fold purpose. It would provide an activity to overcome some of his boredom. The activity would give us signs we could hang around the apartment. The signs might help him feel more oriented. All he was requiredContinue reading “Signage”
this is our life 