The End of Caregiving

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The End of CaregivingI sat down today and figured out that I was a caregiver of older loved-ones for varying amounts of time and intensity for much of the past 30 years. It started with my dad who died in 1987 at age 83. He had a major stroke about six months earlier and was totally incapacitated – no speech, swallowing, walking – nothing. His mind was still working because he tried to spell out words to express his needs and feelings. “How are you feeling, dad?” I would ask. “D……., E….., A….., D…..,” he responded. It was agonizing to watch. My mom who was 79 at the time was still healthy and able to bear most of the responsibility for watching over him in the nursing home. She didn’t want to drive across town every day so she hired a driver, Bernie, who took her back and forth, and who provided consistent friendship and kindness.

My father’s situation gave me my first exposure to what it meant to be a caregiver, but I really didn’t understand the complete reality because my mother took on the major burden. I would go to Rhode Island where they lived as much as I could, but mostly I was a loving, sympathetic observer and supporter rather than an active participant in caregiving. After my dad died, my mom continued with her life with friends and activities, along with my somewhat peripheral involvement for about 10 years. In 1997, at age 89, my mother decided to sell her condo and car, and move to Newton to be closer to me. She had begun to have some health problems and I was going back and forth to R.I. more and more frequently. She wanted to make things easier on me, so, she relocated.

In retrospect, I think this was the beginning of when caregiving became a major part of how I spent my time and, perhaps more significantly, emotional energy. During the next 16 years, in addition to my mother, I watched over my aunt Lena, aunt Celia, my disabled cousin Fred, my uncle Eddie, and finally, Eddie’s widow, my aunt Sylvia who died in December 2013 at age 94. A few of these people had a family member who carried a bit of the load, but the remainder had no one else to care about and for them except me. At one point, my mother, Lena, and Eddie were each in different hospitals at the same time. I went from one hospital to another visiting them, talking to doctors, nurses and administrators, and making plans for discharge. That was about all I could do. Much of the rest of my life was on hold.

Then, within a relatively short number of years, my mom, Lena, Celia, Fred, and Eddie declined and died. Each circumstance was unique, involving lesser or greater hands-on caregiving, but all requiring decisions on health, living situations, dying, death, and burial. In several instances I executed wills and settled estates. As of 2008, only Sylvia was alive. She was pretty independent at age 90. She and I tried to see each other frequently, often going out to lunch at ethnic restaurants. Then she began to decline and, again, I was involved in all of the issues I had previously managed with everyone else, until she also died. She was the last in the long list of family elders.

Sylvia’s death, for me, meant the end of caregiving. There is no one else of that older generation that I will be responsible for. Unless something untoward happens with someone of my generation, I won’t be taking care of any other old person. I have to say that I am extremely relieved. I have gotten through the worry, anxiety, confusion, exhaustion, and stress of caregiving, and I am coming out the other end of what feels a bit like a long murky tunnel. I am glad to be at this end.

This summer I am taking advantage of a place I have had on Cape Cod for 40 years but where I never spent any time. I had to rent it for all those years in order to keep it. This past fall when I began to get the rental forms from my real estate agents, I looked at them and asked myself, “wait a minute, if not now, then when?” I decided to spend the summer here.

The end of caregiving has allowed me to do these things – sit peacefully and watch the glaring orange sun set over the deck, ponder the long, dark pine-tree shadows that flicker all over me and my space, and think about having a nice glass of wine. I am not worrying about someone’s health emergency; I’m thinking fondly about my kids and grandkids. I do miss profoundly the people who are gone from my life but, on the other hand, I am just here being me and feeling free. It is wonderful.

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About Marian

Marian Leah Knapp, Ph.D., wants to start a new conversation about “aging with intent.” Much of what is written about elders is from the point of view of physicians, psychiatrists, gerontologists, and adult children. In her roles as author, columnist, speaker and elder activist, Marian is reporting from the front lines.
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