This Weeks Later Stage Lewy Body Dialogue Chapter

Note: I am starting the "Later Stage" section of the blog with Chapter 98, the one that marks the beginning of Pat's transition from living at home into institutionalized care. I will publish a new chapter every week from Ch 98-149, the final chapter written in the Lewy Body Dialogue section of this blog. Chapters after Ch.149 will be posted in this blog but in the "Living after Lewy Body" section. 


 Ch.140 A Lesson in Humility: Ron the Caregiver Needs Care

          I had become arrogant: Ron the caregiver had only missed seeing Pat for one day all winter, I boasted to several people, as if I had set a “personal best” athletic record. I ignored the fact that Midwest Wisconsin had just finished a surprisingly mild winter with only one heavy snow and virtually no icy road days. I could have been grateful for nature’s gift to Pat and my relationship. Instead, I attributed my success mostly to my tremendous dedication to Pat and to our special bond.

          And then I became ill. I woke up Friday morning dizzy, the room spinning vertically whenever I opened my eyes. At least it’s spinning slowly, I said to myself, comparing this incident with previous episodes. I was confident the dizziness would soon dissipate as it had before. Unfortunately, I was mistaken. I stayed dizzy. And, as I retreated from bathroom back to bed, I noticed that I had slept ten hours straight but that I still felt absolutely fatigued. Finally, I realized that I was sick, and I wasn’t going anywhere soon.

          My daughter Cindy stays at our house when she drives up from Rochester, MN to visit Pat at The Refuge. She quickly realized I wasn’t my usual self when I stumbled down the hallway (“One step forward, one step sideways” was her comment on my progress) to speak with her. Cindy insisted I see a doctor and took me to the Mayo Clinic Urgent Care facility in Eau Claire where a doctor confirmed that I was ill, that I didn’t have Covid, and that I wasn’t having a stroke or heart attack. It was essentially an “I don’t know what you have but here is want it isn’t” message that was intended, I think, to be reassuring. Instead of being reassured, though, I was worried. Who would be there with Pat to help her at mealtimes and remind her that she is deeply loved?

          The answer to this question was that all three of my children (plus my granddaughter Elizabeth) would pitch in. Cindy, Jenny, and Joshua took extra turns, ensuring that at least one family member would be present with Pat twice daily. They also arranged FaceTime calls, a few minutes when Pat and I could talk with each other. They reminded me whenever I needed to hear it that I must not bring this illness to Pat, so therefore I had to stay away longer rather than the least amount of time possible. Basically, I couldn’t return until I could walk straight and stay awake.

          I think it was about day three of my illness when I began considering my arrogance. I hadn’t only missed one day because of any great effort on my part. Yes, I was committed to be with Pat as much as I could, but it was that and a combination of mild weather and good health that made it possible. So, now that I am well, having missed seeing Pat for four days, I will try to appreciate the miracle of being able to be with the woman I love any day I am with her.

          I am also deeply grateful for another miracle: having all three of my children living nearby and participating actively in Pat’s life. It’s unusual enough these days to have your children stay close to home and perhaps just as unlikely to have every one of them actively involved in the caregiving process. Thank you, Cindy, Jenny, Joshua for loving us both --- and for caring for me when I needed you.

 Pat’s comments on: A Lesson in Humility: Ron the Caregiver Needs Care

        Pat (sensing something amiss)to Jenny: What’s wrong? What’s going on?

        Pat to Ron on phone call:  I love you. Get well soon.

        Ron to Pat: Did you feel cared for by the family when I was gone?

                   Pat: Yes

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