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.130 A Sudden Setback for Pat and a Big Decision for Ron

          January 2022

          Pat had been doing well. She was pain free, thinking better, smiling more, and in a good frame of mind for about three weeks. And then…

          Disaster. Another attack of the auto-immune disorder (bullous pemphigoid) that attacks her skin, the third episode of this terrible affliction. And this time it came on faster and stronger than before. Within two days Pat’s groin, legs, hands, and even her mouth were covered with painful, itchy blisters. She was miserable.

          I sent a note to Diane, the Refuge nurse, telling her I would authorize them placing Pat on continuous doses of morphine and alprazolam if they thought it would help. They agreed and, essentially, we “snowed” Pat for two days. I knew this entailed considerable risk: Pat might not ever return to her “premorbid” level of functioning. But watching her suffer was too much.

          Now, four days later, Pat is entirely off morphine. So far, she is still very sleepy; however, she has managed to eat a little and to stay awake for short periods of time. Pat isn’t complaining of pain, and she isn’t scratching, so apparently her prednisone treatment is working. It is too early to tell, though, if or when Pat will recover her physical, mental and emotional capacities.

          A note about care partner responsibility: Sometimes people tell me that since Pat is now at The Refuge I should just relax and be her loving husband. Let the staff make all the decisions. In my opinion these well-intending individuals don’t understand the actual situation: when major decisions must be made, like the one above, much of the weight falls on the care partner. The staff needed my permission to “snow” Pat. They told me they agreed with my decision, but it was still my decision. And, if things go poorly and Pat does not return to her previous level of functioning, I will have to deal with feelings of guilt and sadness. Still, it is good to know I am part of Pat’s health care team; it allows me to feel empowered, combatting the sense of powerlessness I often feel in the face of Pat’s Lewy Body and bullous pemphigoid diseases.


Added Note, two days later: Pat showed signs of emerging from her semi-comatose state the day after I wrote the above essay. Today I’m relieved to say that she is almost back to normal, except for her still being excessively sleepy. But Pat has her smile back as well as her appetite, both of which I delight in observing. Also, the bullous pemphigoid seems to be in check as the staff begins slowly tapering Pat’s prednisone. One more crisis has been resolved, at least for now.

          Pat’s comments on A Sudden Setback and a Big Decision for Ron: I think it was the wrong decision because it continued [too long].

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