We’ve talked about love during caregiving, but I have not been forthright about sex. We don’t talk about that in polite society as my mother would assert. A visiting carer who came by to see Burt was not so circumspect. She suggested I should connect with someone in circumstances like my own. “It’s not cheating,”Continue reading “Love and marriage”
Tag Archives: #dementia
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”
January 28th: it’s not Alzheimer’s
Lewy Body Dementia Day Lewy Body International, founded in 2022, is comprised of organizations from 11 countries. January 28th is designated as Lewy Body Dementia Day by this group of organizations dedicated to working with people affected by this disease. They form a cooperative alliance to share knowledge to build awareness, to offer resources, andContinue reading “January 28th: it’s not Alzheimer’s”
It isn’t but
It feels like betrayal. I know it isn’t, but since I say Love is lovlier how could I? Since Burt’s been bedbound, I felt it was time. Since he’s in such a decline, he couldn’t participate. I met with his doctor to file a MOLST on his behalf. We also opted for a palliative approachContinue reading “It isn’t but”
It’s never too late
The jingle about Jello Instant Pudding® is running through my head right now, but honestly this is a serious post about a serious question. The other night, Burt, in the midst of his confusion, was lamenting how “sick” he feels. My response was to tell him that whatever was bothering him, hurting him and upsettingContinue reading “It’s never too late”
A deep dive
In the abstract, I am fascinated by the mechanisms of Burt’s disease. In reality, the manifestations of Lewy Body are overwhelmingly sad. Trying to deduce patterns is part of my close study into all things Burt. I want to see what prompts his irrational conclusions and how his fantasies develop. There probably is no pattern,Continue reading “A deep dive”
Love and grief
I wear my grief on my sleeve likeA badge on a soccer uniformI hope that the love is a secondPatch also obvious, also on mySleeve. Love and grief commingle,Intertwined, intermingled, linkedIn tears and smiles, in the joy ofHaving you still with me. I see theGlimmers of who you always were.I mourn losing all the rest.Continue reading “Love and grief”
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”
Sadness, no Sorrow
We need to grieve our sorrow. So do our sweethearts who are afflicted. I specifically said “sorrow” rather than sadness. It’s a deeper and more encompassing emotion. It seems that as his disease progresses, Burt grieves less. He appears to be less aware of his situation; if that is so, I am glad for him.Continue reading “Sadness, no Sorrow”
Chug chug
The Lewy roller-coaster has taken a small uphill turn. Burt’s no more cogent than he was at the slip down the slope. The change is more to do with his engagement with others. He’s happy to greet those he passes and more interested in being around others. We’re still surrounded by extra wives (now again,Continue reading “Chug chug”
this is our life 