Almost nine years after her mother passed away from a rare brain disease, Rita Clagett, author ofKilling Mother: Progressive Supranuclear Palsy, reflects on her experiences as a caregiver and what it all means.
by Rita Clagett
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When my friend Chris told me that she still missed her mother and thought about her every day, nine years after she died, I thought, hmmm, that seems like a long time. Not in a judging way, but just observing. Now, almost nine years after my own mother died, I’ll say the same thing. It is less immediate and less huge than it was, but I do still miss my mother and think about her every day.
I have recently been helping her sister (my aunt) make the decision to move to a senior care facility and downsize her belongings. This took me back to Virginia for three months this spring. In the years between, I’ve seen my father through dementia and death, and I’ve been a hospice volunteer for a neighbor with the same rare degenerative brain disease that took my mother from her life. I also nursed two beloved dogs through terminal illness, and lost a lover to cancer. It’s been a decade of caregiving for me.
What I’ve realized is that it never ends. Once we reach this age, if we are people of compassion, the caregiving never ends; you just get a break from it now and then. Because there will always be family, friends and neighbors dying, they or their caregivers needing caregiving. And my generation, whose parents are dying of old age and age-related ailments, is also the generation who is just now beginning to succumb to an epidemic of Alzheimer’s disease (and other degenerative brain diseases).
When I arrived at my aunt’s house this February, one of her oldest friends lay dying after six years of slow decline following a stroke. This man’s son had been his primary caregiver for five and a half years. He’d given up his entire life (including a wife) to undertake this duty.
Tim, already on a spiritual path, saw this as a deepening of his practice, a journey, and he wrote to me of learning to surrender. As a man, he seemed to disappear into the obligation he had chosen. I recognized this from my experience helping my mother through her last year with Progressive Supranuclear Palsy (PSP). I had moved from Colorado back to Virginia to help care for my mother, and entered a world I could not have imagined, changing in ways I am still comprehending.
Symptoms of PSP manifest themselves differently in different people, and claim their lives at varying rates. Three years ago, when I met my neighbor Lily, she was in about the same shape that my mom was eight months before she died. It is a surprisingly difficult challenge to visit with Lily each week and observe the infinitesimally slow deterioration of her ability to speak, to move, to swallow, inadvertently measuring the pace of her decline against the rapidity of my mother’s.
I am beyond grateful that I had the opportunity to walk by my mother’s side through that journey. And sorry that when the time came I could not do the same for my father, but had to manage his care from afar, with only annual visits in which to evaluate his situation and communicate my love to him. I know of no other relationship so complex as caregiving for a parent, so fraught with past and present; a deep blend of loyalty, love and frustration, combined with the subtly shifting dynamic of who we used to be and who we are now in relation to each other.
Grueling gift that it was to love my mother through her final months – to watch her agonizing death as her body slipped away from her self – could I have stood it had it been for any longer? Could I have devoted myself to her care for nearly six years as Tim did for his father? Several times during those years I asked Tim how he was doing, and he bravely replied, “Fine,” and cut off further conversation. Finally, a year ago, I realized he might not know that I had been through a similar experience, so I gave him a copy of the book I’d written about our journey, Killing Mother.
After that, he opened up to me, knowing there was someone who understood. Three days after I arrived at my aunt’s this year, Tim’s father died. A week after the funeral, Tim hit the road with no agenda. He went first to a retreat center, then to visit his brother who lives on a Caribbean island. I did much the same when I left Virginia after my mother died. I drove first to my aunt’s house to collapse for a few weeks. Then to the Dismal Swamp, and then the Everglades, as far away as I could get from anyone I knew, any way to reach me, any responsibility. Finally truly utterly relaxing.
For awhile. And then I came home, and started caregiving again, and put my story down on paper, in case it could help someone else. It turns out it’s true what everyone told me when I started on this path: as a caregiver, it is essential that you take care of yourself.
Killing Mother: Progressive Supranuclear Palsy is available on Amazon and other internet booksellers. Rita Clagett is a naturalist, writer and photographer who lives in western Colorado with two dogs, an orange cat, and a tortoise, keeper of slow time. She divides her time between caregiving when needed, community support, and freelance work. She also documents the natural beauty wherever she finds herself on her blog, Morning Rounds.