LIVING ALONE AFTER LEWY BODY
INTRODUCTION
August 3, 2022
My wonderful wife Pat died on July 1, 2022. As she neared the end, I began considering options concerning this blog. One possibility was ending it completely. Another was to keep it active by continuing to publish previous chapters for the sake of newcomers. But the answer didn’t come to mind until I began to experience what it feels like to become a widower. I quickly realized there is a big difference between living by myself and living alone.
I’ve been living by myself for over a year, ever since Pat was transferred from the hospital to an assisted living center and then to a memory care facility. By this I mean I slept single in the same bed I had slept with Pat for decades. I walked the dog by myself. I made my own meals. BUT every day I went to see Pat, at least once and usually twice. By the end of her life, I was spoon feeding Pat lunch and supper; I was acting as her advocate with the staff; I was taking Pat into the courtyard to help her feel the spring breeze; and I was watching her die a little at a time as Pat lost one ability after another to Lewy Body Dementia. Being Pat’s care partner has been at my psychological center the last half-decade.
Now I am living alone. When I finish writing this piece, I won’t be rushing to the next room to read it to Pat and receive her feedback. Yes, I can imagine what she might say, but I never could predict her responses very well and that was what made them special. I listened to Pat and took her feedback seriously precisely because it was both unpredictable and valuable. Living alone, to me, means having to leave a caregiving role/career that captured almost all my time, energy, and emotional commitment, without having any new clear direction. In other words, “NOW WHAT?”
I’ve decided to keep running the Lewy Body Dialogue blog. Each week I will highlight one early stage and one later stage essay, all previously written. I hope people who been reading this blog will recommend the blog to others, especially Lewy Body newcomers.
And here is what is new. I am adding a page to the blog entitled Living Alone after Lewy Body. This page is intended for care givers who have lost their partners (or parents, siblings, friends, etc.) to Lewy Body – anyone who has been strongly affected by watching someone they love perish from the effects of LBD. I will share my experiences transitioning from being totally involved with Pat and her disease to regaining a more “normal” lifestyle.
Note: For the sake of continuity, I will continue numbering chapters consecutively; the Living Alone section begins at Ch.149. These chapters will be alphabetized with the other chapters and kept on the same "previous chapters" page as ones from the previous writings.
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