HALLOWEEN TRICK OR TREAT?

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My life has returned to me feeling like I am drinking from a fire hose. Days are busy. Nights are restless. There is a lot on my mind, and I worry that I do not have much of it under control. Even with a long list of to-dos for the morning, however, I wanted to write about my Halloween surprise. My husband’s illness has been a heavy burden recently because decisions have been made that I find both daunting and indicting if they are wrong. As I have many times in the past few years, I question the most difficult part of caring for someone with dementia – making those potential life and death decisions without the guidance or benefit of having had any conversation about these decisions prior to the onset of the disease. When to treat, and when not to treat? When a change in medications is called for, when not to change anything? What can be fixed, what cannot be? I struggle with the very concept, as my life-long bias has always been to fix things. The shift to letting things play out as they are meant to continues to challenge me.

Imagine my surprise yesterday as I was fixing dinner to be summoned to my loved one’s chair as he asks me for instructions on how to solve the scrambled word Jumbo puzzle in the newspaper. I notice further down the page he has already completed the Sudoku and KenKen puzzles! In days past he knew all of this, but it has been literally years since he finally confessed to me, “I just can’t do them anymore.” With mechanical pencil in hand, there he was working his way through the puzzle page of the newspaper! Monumental, emotional, scary … was this a Halloween trick or an amazingly wonderful treat?

While I cannot explain it, I will continue to watch for more. But it does give me pause. Once again, I am wondering whether we have got things right. I question whether I am making the best medical decisions for him, and ponder – should another PET scan be done? I think about his brain and ask myself whether his neurons are recreating themselves and rebuilding connections that previously were not working. I wonder whether any of this is “normal” for the progression of Lewy Body Dementia or any dementia for that matter. Some of this is just beyond my comprehension.

One additional thought as I ponder where we are on this journey. I am blessed beyond measure because he is still here with me. Still here, and by some measure, thriving! Thriving with dementia? Really? I know his current quality of life is better than it was in the past. He seems to me to be contented. Part of me rails at the unfairness of that. Part of me celebrates how fortunate we are to be able to still have this level of wellness. Thank you, God … whether it is a trick or a treat, I am so grateful.

UP FOR DISCUSSION:
I have been told that especially with Lewy Body Dementia inconsistent brain function and subsequent capabilities can fluctuate and feel a little like a roller coast – with good days and bad ones. Today was certainly a good one! How about you? What has surprised you on this journey and what do the “good days” look like for you? Any miracles you would like to share?

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