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. 

THIS WEEK'S LATER STAGE CHAPTER:

Ch.115 Pat Begins Taking a Strong Pain Reliever

          September 2021

          Pat has been in significant pain for a long time; she has two ulcers on her backside and another on her heel. Until today the only medicine she’s taken for the pain has been Tylenol, only because I have insisted that the well-known risks for people with Lewy Body taking opioids (mainly a rapid, irreversible drop in cognitive skill) made it too risky to try. But two days ago, the Director at The Refuge, a woman I’ll call Carol, talked with me about sparing Pat needless pain. Carol said that in her experience, which is extensive, these “black box” symptoms associated with opioids were rare. She said they had never had someone suffer cognitive loss from taking pain medicines while in their care. She recommended, for the second time since our arrival, that we try them, with the understanding they’d stop them immediately if problems occurred.

          By the end of that conversation, I felt trapped between my resolve to protect Pat from danger and my desire to comfort her by lessening her pain. I couldn’t do both. I had to choose. I felt sad, worried, scared, confused. Lost.

          Here’s where it helps to have knowledgeable friends and resources. In the next few hours, I contacted Paula, my support group facilitator in St. Paul; Janelle, my support group co-facilitator in Eau Claire; and a social worker at the Lewy Body Dementia Association. Paula, who has a vast store of Lewy Body knowledge, recommended going ahead with an opioid trial; Janelle gave me specific information about which meds might work best; and the social worker told me to “Go low and slow,” meaning to start with a low dose of a relatively weaker medicine.

          I was still conflicted. But then an image appeared in my head. I saw myself standing between Pat, who was in a lot of pain, and a group of people wanting to help her. And that felt wrong. I felt arrogant; I had given myself the exclusive right to decide what would be best for my wife. I hadn’t even asked Pat what she wanted. I realized that I needed to let Pat tell us what she desired (which was pain relief despite the risks), and I needed to let the professionals at The Refuge do their job.

          This morning Pat began a trial of an opioid pain reliever. Tonight, she was her usual self, but with more of a smile.

 

Pat’s comments on Pat Begins taking a Strong Pain Reliever:

          I want to feel less pain.

          I feel better [with the pain medication].

 

Follow Up Note:

October 2021

          About three weeks ago Pat began taking an opioid pain reliever, a Fentanyl patch to be specific.  The nurse at the Refuge, whom I will call Diane, recommended that medication because Pat would not have to take more pills and Pat has had some trouble swallowing pills lately. I hesitated because the advisor at the Lewy Body Dementia Association with whom I consulted said that going from Tylenol to Fentanyl was “a big step up” and violated the “go low, go slow” format she advised.

          Sure enough, Pat went into sleep mode once she began the Fentanyl. Either she was sleeping or in a fog when “awake.” Pat’s pain abated, but at a terrible cost.           I then spoke with her nurse practitioner Barbara, the person in charge of Pat’s care, and she suggested a different medication, called Butran, also available in patch form. Butran is still an opioid, but the strength of the dosage is considerably weaker than Fentanyl’s. Pat agreed to the switch. Thankfully, Pat now appears to be getting reasonable pain control without cognitive inhibition. She is Pat again.


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