From October 2023 Everyone seems to have settled on calling this a journey. I get it. Life is a trip we take. It’s a journey we have undertaken and a course that we are set upon to follow. Whither it takes us, we go. Like many others amongst us, our journey took us to unexpectedContinue reading “Where we are (2)”
Tag Archives: #about-our-journey
Your story (on repeat)
Memory fades. Not just yours, my dear which was strangely altered and crippled by the dementia with which you suffered. Everyone’s. It, like the hearing of which couples complain, can be selective. Or just inaccurate. It was a gift to me when you recounted so much of your life story to me. Some of itContinue reading “Your story (on repeat)”
Our outdoor weekend
reprinted from Oct 2024 This morning, Burt asked me what I was doing yesterday. I said I was in the park with you. “I didn’t see you. Why didn’t you come say hello?” It now occurs to me that Burt is antsy in the park when he doesn’t realize I am with him. Our outdoorContinue reading “Our outdoor weekend”
No aide [a day on the journey]
I take my respite seriously. I’ll admit sometimes too seriously. Time away from the unusual thinking fostered by LBD is my golden ticket to staying sane. Or so I fervently believe. I take that time each weekday. On the weekends, we have help so I can have less hands on with the care. All ofContinue reading “No aide [a day on the journey]”
Conjuring Dickens [repost]
Not only is Burt emotional (as documented here before), but he is capable of having a multitude of conflicting feelings at once. It was the best. It was the worst. All on one occasion. He has no filter, so he isn’t shy about letting me have it. Nor in the least non-plussed at sharing aContinue reading “Conjuring Dickens [repost]”
Help is on the way (rerun)
As a caregiver, it’s easy (and way too common) to feel alone on the journey. In many ways, we are. The idea that no one is coming to our rescue when we are in the throes of a Lewy episode; the feeling that the worst moments are the ones only we can handle is provocative.Continue reading “Help is on the way (rerun)”
Writing group
Focus on yourself. Your loved one will never get short shrift under your watch. The gaze of self-care is usually a bit myopic. Chances are that you will draw the shorter end of the stick as you walk the journey with your person. You will learn to advocate. You will be aware of signs andContinue reading “Writing group”
The last 5 years
There are so many pictures of Burt, mostly during the journey, but a lot of us at ballgames, on walks having fun. The photos perch on every free surface in both rooms or sit tacked to the wall. Our wedding photos, and an album, are also part of the decor. The photographic reminders take meContinue reading “The last 5 years”
Burt deserved the extraordinary [redux]
Burt was extraordinary. He and I had lived a happy, carefree, and modest life. We had no ambition to stir us towards greatness. He had daydreams of coaching a hapless team with me in the dug- out by his side. Sometimes. Not an ambition. We were impressed by talent and in Burt’s case that meantContinue reading “Burt deserved the extraordinary [redux]”
Video memory
Waiting for my old cellphone to migrate to the new one gave me an opportunity to catch up with the video of Burt in the rehab. He came home from the facility on February 25th, 2 years to the day before he died at home. The video is just under 7 minutes and in itContinue reading “Video memory”
