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.
THIS WEEK'S EARLY STAGE CHAPTER:
Ch.15. Slightly Unusual Behaviors (SUBs).
Pat has never been a model of conventionality. In fact, she’s sometimes decidedly unconventional. For example, for years she’s picked up rocks almost every time we go out to dinner, taking one or two from parking lots and garden areas. The rocks aren’t special. They’re neither large nor particularly compelling or beautiful – just rocks. We have a good portion of our garage full of these rocks,
keeping each other company. Let me add that we also own an extensive collection of minerals such as turquoise and a collection of seashells that Pat and I have gathered, on her initiative, over the last thirty years. Pat’s been a rock lover all her life, having grown up on a cliff overlooking the agate filled St. Croix River.
Lewy Body has added to Pat’s unconventionality. Now she does unpredictable things that are just a little “off.” One example: the other day she ordered both raspberry lemonade and a non-alcoholic beer with dinner.
Another example is that sometimes at breakfast with our friends, Pat seems to become bored with the conversation and she simply drifts away, even on occasion reading a book or newspaper at the table.
I call these actions “subs,” which stands for “slightly unusual behaviors.” They have made me recognize how much normal social life is full of norms, guidelines and rules. It’s as if Pat were saying that she doesn’t have time anymore to bother with silly rules and conventions that just limit people’s freedom of expression. And when I do “hint” that what she is doing is a little odd, as I did when she ordered those two drinks, she often shrugs me off. So, what the Hell.
I do have one question, though. How much is Pat aware that she is breaking these relatively minor societal conventions. Does she know and not care? Or does she not realize what is happening? If the former, I should stay out of her way. If the latter, perhaps I should at least call it to her attention? Probably sometimes she knows and other times not. How can I tell?
Pat’s comments on SUB’s.
I am aware that I am following what I have been taught to do in my family. If something feels more correct or more OK than a conventional response, then do it. Do what feels right to you, not what everyone else wants you to do.
My response is that it depends on what is going on with the groups and with me. For example, after trying the O’Douls beer, I did not like it very much, so I switched to asking for a pink lemonade which was much better. I did not ask for a substitution. I had ordered an O’Douls but did not like it though I HAD ALREADY BEGUN TO DRINK IT.
At the movies I bought two boxes of different kinds of candy before the show. As I’ve grown I know if I want more than one kind of candy that’s ok. There isn’t anybody telling me I can only have one.
Added note January 2020. Ron.
A year has passed since I wrote my previous comments. During this time, I’ve learned mostly to ignore these small details. Compared with bigger concerns such as hallucinations and the danger from falling I don’t need to worry about these minor differences. I still notice them, but they simply don’t cause me to feel as embarrassed. And if I do choose to feel embarrassed that is my problem, not Pat’s.
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WOULD YOU LIKE TO WRITE A RESPONSE TO THIS EPISODE OF OUR JOURNEY? How has it affected you? Have you had similar experiences? If so, go to the "Write us and/or join our new chapter mailing list" page to send a private note to Pat and myself. You may also contact us at [email protected].
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