This Weeks Early Stage Lewy Body Dialogue Chapter

         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.  

 

Ch. 45: What Ron Doesn’t Understand About Me.

            [This chapter is initiated by Pat with a response from Ron]

 Because I can’t drive I’ve lost the ability to find quiet places where I could go and find plants and animals – things in nature, special places that I could commune with and that is a very big loss. Sometimes these places feel holy to me and that is why I want to stop at them. My fantasy is that if I am driving with Ron and I find a beautiful place to stop he would not want to. He’d say (and he has said) “Why do you want to stop here? There’s no place to park.” And when I find those places he tends to think I’m being silly. I’m not being normal.  My response is mostly to stay in and around the house.

            It’s frustrating to me that when I see a place that has a particular feeling about it, and I want to explore that place I feel I cannot. I know it upsets Ron when I insist on stopping somewhere that feels right to me but he doesn’t understand. I have not figured out what to do about that and I have no way to find those places now without being able to drive. I wish sometimes that Ron was more of a wanderer and he could wander with me and he could smell and sense and feel what was there but he seems not to be able to. The main thing I hear is he thinks what I’m doing is silly and I hesitate to tell him that what I am doing is almost religious because I can’t imagine what he’d think then. I feel I have lost one of the most important parts of me or I am giving it up so he won’t be uncomfortable.

            I think that when I wander like this I discover things around me and about myself – things that give me a sense of worth.

[from Ch.44] I am more aware of who Ron is and how he structures his life and I understand some of my frustrations are because I don’t structure my life in the same way. Still, when I talk to him and when I share with him what is important to me he can understand some and not everything. I do love him very much.

 

Ron’s comments on What Ron Doesn’t Understand About Me.

            Pat’s essence has always included something I call her “wanderer.” Even today, as we drove in the countryside, she talked wistfully of us “getting lost a little” on our ride. The wanderer is her creative, nonlinear, spiritual self. I believe the wanderer is essential to her sense of being. It gives meaning to her life. I’ve often imagined that one of my jobs in our marriage is to provide the grounding that allows her to wander safely – to get lost in safe places, you could say.

            Wandering like this makes me anxious. For example, I can drive around not knowing exactly where we are for maybe half an hour but as I do so I feel my body tightening and my breathing getting faster. By then I want to stop the car, pull out my phone, go to “maps” and find out how to get home. This disappoints Pat who would like to keep exploring.

            Pat used to feed her wanderer without me, maybe even despite me. But now we are more glued together. She can’t drive away. I have tried to help her find some ways to honor that part of her but obviously she grieves her loss. And sometimes she resents me for limiting her freedom, which I admit I do.

            Something I can do is to consciously face my excessive fears and separate them from realistic concerns about Pat’s safety. I’m working on that.

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