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 "Shared Grief." You may go to that page to read the introduction and new chapters as they are written. Finally, Ron began a fourth unit, "My New Life," in July 2024, after the second anniversary of Pat's death.
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Ch.46. Who Would Take Care of Pat If I Couldn’t?
This concern has been gnawing at me ever since I received a heart stent on May 23, 2019, about five months ago. Lately I’ve been asking myself this question more and more frequently, even though I’m generally a healthy 75-year-old male. Apparently healthy, for sure, but… winter’s coming and I could slip on the ice; since I almost had a heart attack maybe I’m due for a stroke; my mother died of cancer in her forties and my Dad died from diabetes at 60 so when will my luck run out? I could die or become incapacitated in so many ways. What if these eventualities occur sooner rather than later? Then who would take care of Pat?
I’m probably the one millionth caregiver/care partner who has worried like this. The people we love live precariously, as do we.
We are fortunate to have all three children living close by. I’m certain each of them would immediately offer Pat a place to stay for as long as she needed. Indeed, all three own homes large enough to allow Pat a room of her own. They also own hearts large enough to willingly find a place in their families for their Mom. But how realistic is that plan? My kids are all wage earners. None of them could just quit their job and stay home all day with Pat like I do. Perhaps someone could be hired to come in several hours every day, hopefully someone who would take Pat places she wanted to go, listen to her stories and concerns, and be alert to her medical needs.
I wonder if I’m being neurotic and narcissistic, acting as if I were irreplaceable, and that Pat simply could not survive without me. I hope so. Then it’s only my problem and not a real issue.
Maybe a better question than who will “care for” Pat is who will “look after” her? That term feels better to me – I think it recognizes that Pat can mostly take care of herself but that there are some areas in which she would need help if I weren’t around.
I have found one action that helps. It’s giving thanks at the beginning and end of the day for still being here and being able to provide for Pat’s needs. Since I have little control over the future, I am better off concentrating on today’s safety issues rather than those of tomorrow.
Pat’s comments on Who Would Take Care of Pat If I Couldn’t?
I think I would be better able to take care of myself than Ron thinks. I have as long experience of the world as Ron does and I am prepared to address the issues of taking care of myself better. I may or may not even need another caretaker. I have been independent in many ways and I have by now had considerable experience with Lewy Body issues. I am not ashamed because I am a little different. I often think of what I either might do or could do if Ron were not doing so much for me. I would need to welcome the new challenges and I can do that.
I would be happy for help from the children, but I don’t feel I’m dependent for that on them either.
There are times when I feel Ron underestimates me and I am also very capable of asking for help when I need it. One change I would be happy to see sooner is that Ron and I could start walking around the neighborhood together because we are generally not doing that, and he drives and I can’t. I would learn more about where I live, what to welcome and what to avoid, and what Ron might worry about most.
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