The "Early Stage" mentioned here represents the first 56 chapters of the Lewy Body Dialogue blog.
The chapters presented on this page were originally written between 2018-2020, representing the first two years after Pat was diagnosed with Lewy Body Dementia and perhaps 3-4 years after Pat's Lewy Body symptoms began altering our lives. This page is intended to help people new to the Lewy Body experience -- "patients," care partners, professional caregivers, concerned friends and family members. Although everyone with Lewy Body develops their own unique set of experiences, we've tried to focus upon issues that a large number of people with Lewy Body confront.
If you also wish to follow how Pat and I did as she has progressed into the later stages of Lewy Body, please go to the page entitled "This Week's Later Stage Lewy Body Dialogue Chapter."
Pat passed away on July 1, 2022. Ron has now begun a new series entitled "Living Alone After Lewy Body." You may go to that page to read the introduction and new chapters as they are written.
NOTE: Because of the great number of people who read this entry this week, I've decided to repeat it here for one more week.
Ch.257 My Greatest Caregiver Mistake
June 2024
Yesterday I read an article in Discover magazine comparing opiate, heroin and fentanyl addiction patterns. In contrast to opiates and heroin, fentanyl addiction rates have been climbing exponentially, resulting in the loss of many lives. That article brought back memories of the greatest mistake I made as Pat’s caregiver.
Pat had struggled with tobacco and alcohol abuse, as well as with compulsive eating and hoarding behaviors most of her adult life (although she had quit drinking and smoking well before she was diagnosed with Lewy Body Dementia). Also, the Lewy Body literature was replete with warnings about the cognitive damage many medications could cause for Lewy Body patients: taking these medications (especially antipsychotics but also possibly pain medicines) might result in someone’s cognitive capacity dropping, never to return to its previous level even after the medications were discontinued.
Pat was in pain, though, at the assisted living place she was sent for rehabilitation. Because of uncontrolled diarrhea, her buttocks were continually sore to the point that she actively fought caregivers trying to clean her and change her Depends. “Here comes the pain,” she told my daughter Jenny once as they approached. The staff wanted to give her strong medication to lessen her pain and to make her less resistant to their care. But I balked, not wanting to chance Pat losing her thinking ability. It wasn’t until she was transferred to Azura Memory Center that the staff there convinced me that Pat needed stronger pain relief, namely opiates. They assured me that they had never seen Lewy Body residents crash mentally from them. But, even more importantly, they talked about pain management as a normal and necessary component of care. I finally agreed. Pat’s pain diminished; she fought the staff less frequently; her diarrhea came under control; she didn’t experience any cognitive decrease.
Only after Pat died did I realize how much my desire to have Pat thinking well was both protective of her and a sign of my neediness. I was desperately hanging on to Pat’s brain as if I were clinging to a life raft. I wasn’t prepared to lose her mind, so I sacrificed her body, making her suffer unnecessary pain.
Writing this doesn’t mean I’m beating myself up. I did the best I could under trying circumstances and I generally did a good job as Pat’s advocate during her Lewy Body journey. I hope that by admitting my mistake I will encourage other care partners to weigh carefully the balance between the benefits and dangers of pain relief medication, without bias in either direction.
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