When that diagnosis of dementia comes, it’s natural to wonder how the future will look. Dementia is unpredictable, LBD perhaps a tad more so then Alzheimers, but all dementias are unpredictable. It’s hard to never be sure what’s in store for us. The uncertainty can be very disorienting for the caregiver. I also imagine thatContinue reading “What next”
Tag Archives: #challenges
Relaxed performance
When Burt said he missed going to the ballet, I really wanted for us to go. It didn’t happen; I heard about a performance geared to the diagnosis on a Friday; the dance event was scheduled for Sunday. I wasn’t able to pivot that fast. I still have regrets. It wasn’t easy to find accessibleContinue reading “Relaxed performance”
Love and marriage
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”
Take care
It hadn’t occurred to me until my friend T said it. Burt chose me. He knew I would be there for him. I am always uncertain when I say that, although she assured me it was true. There were all those times his wife was missing. Did she go to Walgreens, she was always atContinue reading “Take care”
The sun will
The last five years have been harder on me than I felt as they rolled along. Caregiving is an encompassing experience. It holds your focus; your loved one keeps you focused on doing for…. Burt was the center for my worry and care. I was a model for selfcare, I say with no boast orContinue reading “The sun will”
Careful what you…
When Burt was newly diagnosed, he was feisty. He was difficult. He was contrary. His willfulness made it hard to divert and redirect him. He would argue, fight, and dispute my plans for his care. I would say (or think about) all those stories I had heard of dementia patients who were sweet and docile.Continue reading “Careful what you…”
A sea change
Burt’s roller coaster has just been on one dip after another. His being bedbound poses a serious risk. Today we are expecting a visit from a nurse from VNS to assess the damage. We are treating two sores and the beginning of one on his butt cheek. Perhaps the nurse will have some added wisdom.Continue reading “A sea change”
Lonely
Caregiving is lonely. I’m sure I have lamented this in numerous posts. Burt seems like he’s pretty lonely, too. If you have a pwd, your person might also be feeling lonely. I need to be a bit more hands-on empathetic. It’s hard to stick with him when he’s not making sense. He’s lonely even withContinue reading “Lonely”
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”
Alternate world
If you are living with a person with dementia and particularly this dementia, you know that your person spends much of his day in an alternate reality. There are delusions and theories that give credence to and explain them. Hallucinations are common occupants in the world of your loved one’s with LBD. Burt’s hallucinatory companionsContinue reading “Alternate world”
this is our life 