Everyone’s journey is their own Your experience with your pwd will likely differ from mine. It’s never the same, yet there are the broad strokes. Different and the same, there are symptoms that may be familiar or that you and your loved one may never encounter. The saying among LBD carers is “if you’ve metContinue reading “It will be different”
Category Archives: Advice
What next
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”
Friendship
Inspired by an episode of IMO Burt had been my best friend in so many ways for the 30 years of our marriage before his illness. We shared so much. We went to lunch and we went to the theater. We even worked together. Listen to the IMO episode where Michelle Obama and her bigContinue reading “Friendship”
Joy
In my post Advice, I said that I found joy during our journey with Burt’s dementia. It sounds Pollyanna-ish, so let me expound. Caring for someone you love is a gift of grace. The gift is reciprocal, so when Burt was aware enough to thank me, that thanks was my gift. When he wasn’t aware,Continue reading “Joy”
Advice
From the perspective of after My message for you, preparing for life with and then after, is that you find the joy. There was plenty of joy in caring for Burt. It was sometimes a discovery of who he was under the patina of our marriage; sometimes it was enjoying his jokes, and more importantlyContinue reading “Advice”
The Burt Blog
When I started this blog, I was “working” other sites, sharing my thoughts on a variety of topics. I was reluctant to breach our privacy in such a blatantly public way. Burt would be more exposed than I and I had some concern for his dignity. My decision was cemented by two facts. Lewy BodyContinue reading “The Burt Blog”
By the way
It dawned on me as I described someone as “yes, Burt loved him” that I had said that or something like about alot of the people we met or knew. Burt found many friends over the years, especially as he slipped into dementia. He liked people and this came back in a kind of karmicContinue reading “By the way”
Unsolicited
If you are a caregiver, I am going to give you some advice. Remind yourself that you love your person with dementia. Love is complicated. Caring is love. Holding love makes the journey easier. Applaud yourself for the care, patience and [yes] love you are giving. Applaud yourself for the compassion you are living. CareContinue reading “Unsolicited”
This will surely help
My mind reverts to the wisdom that warns us who are caregiving that «the cavalry isn’t coming.« It isn’t and we are, surely, on our own. In fact, if there were a cavalry, we would have to be the one to lead the charge. We don’t have a cavalry that will save us from theContinue reading “This will surely help”
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”
this is our life 