Burt died at home. I’m glad I was able to take care of him at home for most of his struggle with LBD. Burt died at home, but I was not there at his moment of passing. Burt passed sometime between the moment I left home to walk to the gym and the ten minutesContinue reading “Forgive me”
Tag Archives: #day-in-the-life
Artifacts
Recently when R and I were reminiscing about Burt, she said that when she started working with him, he always sat in front of the TV, planning shows for us to watch. He had been doing something like this for a long time. Before Lewy, he picked out our evening’s entertainment from the FIOS guideContinue reading “Artifacts”
A great find
Noodling around my video cache, I found a 6 minute video in which Burton is speaking. We are snacking at the rehab. It’s dated April 2023. He is sweet and really enjoying his sweets. Among the dialog is his request I bring one cappucino instead of the latte. I say “But you like latte.” BurtContinue reading “A great find”
Losing him again
He’s been several people over the past many months. Well, this is not at all unexpected; aren’t we all many people over a lifespan. I look at him sleeping now and regret that I can’t recall with any confidence what he was like two months ago or four years ago. I know who he isContinue reading “Losing him again”
Day to day
There is so little that changes by any magnitude. Burt remains in bed. He wriggles from his side posture to lie on his back. He shifts from the middle to which we’ve struggled to put him until his head leans on the bed rails. The bed rails were causing a dent on his forehead. WeContinue reading “Day to day”
Speaking of gratitude
As I suggested to you, because it was suggested to me, it really helps us focus on the caring when we note at least one positive interaction with the one we love. I dare say, this is true in civilian life also but for us who are caregivers, it’s a monumental help. I had twoContinue reading “Speaking of gratitude”
The practice of care
Best practices include the care of our darlings but as caregivers we need to look out for ourselves. Care for the caregiver includes respite, a topic dear to me and upon which I have expostulated at length. Self-care can and should be done in the company of others. Spend time with friends. I have lunchContinue reading “The practice of care”
Best practices
One of my goals for this site is to offer guidance where I can. I want to list some ideas and tips that I have found handy on our journey. 1. Burt had some trouble vis a vis food early on. It worried me. I was feeding him lots of lemon meeingue pie and eggsContinue reading “Best practices”
Short bursts of energy
There’s a support group that «puts the I in caregiver« which I value for its honesty. It’s akin to the one urging us «to be selfish.« I take about 5 hours for myself each day. It’s a necessary indulgence. Let me try to explain what my time away does to benefit me. When I getContinue reading “Short bursts of energy”
He knows me, he knows me not
«That’s not a very LBD thing,« my support group leader mentions. It’s not, and I resent that. There had been «a promise« that I would not be forgotten. The word was people with Lewy Body Dementia tend to always remember their loved ones. It’s not like Alzheimer’s. Well, Burt knows I am important in hisContinue reading “He knows me, he knows me not”
this is our life 