Ch.20: Acceptance: Yes; Passivity: No
Pat and I recently attended the Meeting of the Minds dementia conference in St. Paul, MN. There were about 1,000 people there, including those with various kinds of dementia, caregivers, and professionals. The theme of the conference was basically “Yes, we have dementia, but our lives are far from over.” People talked about what they’ve had to give up because of their disease (e.g., driving), what they’ve been able to retain to some degree (e.g., canoeing with a friend rather than soloing) and what new activities and relationships they’ve developed since their diagnoses (e.g., joining a singing group ironically entitled “The Unforgetables”).
One of the presentations was specific to Lewy Body. It was facilitated in part by Dr. Bradley Boeve, the Lewy Body research professor at the University of Minnesota. He emphasized that you should not just be passive regarding the symptoms of the disease. For instance, he stated that REM sleep problems could and should be approached carefully but aggressively. That rang a bell with us because Pat has been having more difficulties in that area. She’s been sleeping lightly, awakening often, and arising in the morning hallucinating children and adults walking around our home. Her sleep problems were exacerbated by my own tendency to wake up several times during the night and sometimes not be able to get back to sleep. Our combined result was daytime fatigue and too much napping. But with Dr. Boeve’s advice in mind, we’ve mutually now begun a trial of Melatonin, the first step in REM problems treatment. Initial results are promising. We’re sleeping better and Pat isn’t confused when awakening.
Pat started wearing her “I am Lewy Body” bracelet (available from the Lewy Body Association) after the conference. My understanding is that she felt ready, after hearing others tell their stories, to more fully accept her condition. Acceptance is an active state of mind, as against passivity. For example, when alcoholics accept being “powerless” over their addiction, it doesn’t mean they just give up the fight. Instead, they recognize their reality and take the steps they need to live a sober lifestyle, such as attending A.A. meetings. Accepting Lewy Body indicates that someone is ready to spend less time denying and minimizing his or her condition and to spend more time taking active steps such as exercise, singing with a group, reading, solving jig saw puzzles, and anything else that will help slow down cognitive deterioration.
Acceptance and Passivity can be placed upon two continua:
Acceptance …………………………………………………………………………. Denial;
It is important not to confuse these two distinct entities. Obviously, the best place to be is in the “acceptance/active” quadrant. Personally, I tend toward the “acceptance/passive” area, meaning I am a little too likely to say to myself “That’s just the way things are and there’s nothing we can do about it.” So, if I want to be Pat’s best caregiver, I must recognize and challenge that tendency. I need to remind myself to challenge reality rather than passively “accept” Lewy Body.
Pat’s Comments on Acceptance: Yes; Passivity: No.
This is a complicated subject for me. I want to be accepting of who I am including of my Lewy Body. As I am more accepting of who I am in all of the ways that I am I think my brain functions better. I don’t remember everything better but there are big words like I haven’t used in years that I find myself using frequently and with ease. That feels good; that feels like acceptance. One of the words was “interlocuter.” I had a very large vocabulary as a senior in high school and beyond that time. I feel good when I use words or recognize longer words like this that have a larger meaning.
It helped me to wear the Lewy Body wrist band during the Meeting of the Minds and I’ve worn it for a few days afterwards. I know I have Lewy Body and I do accept that.
Active and passive is a more difficult concept for me because depending on the day and on my internal weather some days I am passive and I want to sleep much more than others. I enjoy those days although I enjoy the days I’m up and active as well. I think my focus is more on accepting who I am now whoever that is and I don’t see the times I am sleeping and resting more as times of denial. I don’t think I deny my Lewy Body anymore and I am glad about that.