|Chris and me, October 2020|
One in five people in the United States are caregivers—folks who take care of those people who can’t take care of themselves completely.
It is typical to take care of a parent who has reached her 90s on her own, but now has some form of dementia. Some parents have children who never reach independence and need care for a physical or mental disability all their lives. Caregivers can also be unrelated to the people needed care, spending their time in nursing homes or assisted living facilities. One thing, though, encompasses all caregivers.
Caregivers are under valued by our society.
Without their work, the elderly, infirm, and sick would suffer more than they already do.
I was a caregiver for my parents until my own challenge struck in 2016 with the ALS diagnosis. Suddenly, I needed another person to help with every day activities and could not do things for myself that I had done previously.
My husband Chris Swarth vaulted into the role. The majority of care given to people with ALS comes from their spouses. We are no exception. We went from international travel and happy-go-lucky life to the minutiae of dealing with accessibility issues around the clock day after day. No time off.
When the diagnosis came in, my adult children Dana and Evan
Swarth circled the family wagon and made plans to do what was necessary to not
only help me but help give Chris some relief.
|Chris, Dana, Evan, and me, wedding renewal ceremony 2019|
That level of care isn’t readily sustained. For 3 years, I came to work at the University of California Riverside where I was taken care of by my assistant Jeanette Westbrook. Jeanette started with helping me get to far-flung meetings on campus to, at the end, helping me stand up and pull up my trousers in the restroom. She cared well beyond her official job description.
|Jeanette and Marilyn, 2019|
Caregivers of terminally ill patients rarely take a day off.
I know first hand that I depend completely and entirely on Chris, but know he needs time to himself. Dana took care of the family compound in Mariposa for several years. She maintains an organic garden for us, catches marauding garden gophers, and sends Chris off to spend a day or two on his own.
Evan, in the middle of nursing school, can practice his skills on his old mother, who he affectionately calls “Wally”, the wombat. From the beginning his no nonsense, calm spirit has lifted up my spirits and relieved Chris from a few hours of caregiving. He loves cooking, so when he comes to help out we plan elaborate meals, with me doing more and more feeble chopping of veggies, while he whips the food into shape.
Eventually, the caregiver network needs to expand beyond family. We hired our first caregiver in July 2019. Joni Camacho, in her mid-fifties, had just moved to Mariposa from the Central Valley. She had experience taking care of a variety of older patients. It has taken us some time, but we’ve figured out how to work together.
|Marilyn and Joni, masked|
Caregivers usually have certain things they “enjoy” doing and other things they avoid. Joni arrived when I still carried around some personal privacy and dignity about my appearance. She still maintains a semblance of giving me some “privacy” while helping me get dressed by standing behind me, handing me things without questions, and looking away politely.
Together, we enjoy lite gossip, joint cooking—she does all the work, I give directions. She empties wastebaskets overflowing with old tissues, sweeps floors to keep them safe for my few steps, and washes my hair and my rump. She’s just started a community college program and taking classes to become a certified medical assistant. We exchange notes on teaching and being taught.
It comes as no surprise that I’d have encountered a caregiver who didn’t work out. Michaela R. of Mariposa, in her late twenties, was used to bathing 12 old people a day, shuffle them into their diapers, and then tell them what to do. That approach didn’t work with me. She ghosted us after a few weeks, not showing up or calling to say she was quitting. Buyer beware in hiring caregivers.
My 93-year old mother is living the caregiver journey. My younger sister took on some of the work, but at the end of her life a couple years ago, she was overwhelmed with her own problems. We hired some great caregivers, Joan and Kaitlin, who managed for almost three years, then everything fell apart.
My brother Fred, his wife Linda, and my friend Franny, managed to get mom into an assisted living situation in the middle of the COVID-19 panddemic. That turned out to be short-lived. Today Fred and Linda moved mom into a more appropriate, secure memory care “village”. Because of the virus, no one can practice informal caregiving in person. Fred, Linda, and I work remotely on mom’s care.
Caregivers feel the burden of their work and are often stressed more than normal.
When I tumbled over two weeks ago, I twisted my left ankle and stretched my hamstring muscles. This led to a spiral of less and less independent standing and walking. And more stress for Chris, Dana, and Evan. They’re not pansies, so without skipping a beat, they pitch in and adapt.
|Evan and me on the sit-2-stand machine |
Family caregivers are rarely paid.
Caregivers who work for non-family members are usually poorly paid—minimum wage in Mariposa and many places. [I pay above minimum wage.]
Health insurance does not cover the cost of care giving for ALS and other terminal illnesses.
My friend Charles took over the care of his 94 year old mother this summer. She had lived in assisted living for years, but that situation was failing her—she needed around the clock care. Charles rented a one-story house with a pool, moved his mom in, and organized his sisters to help him with her care. His mom took her final breath a few weeks back, surrounded by all of her children who’d taken time from their lives for end of life care.
Other friends have also recently shared in final, end of life care for their parents in the midst of the COVID-19 pandemic, which has changed the landscape of elder care. Family members globally have put themselves in harm’s way to care for loved ones with this virus. 225,000 people in the United States alone didn’t make it. Their loved ones carry that burden with them going forward.
Take time to thank someone you know who is shouldering the burden of caring for others.
Bring over a meal, offer to run an errand for them, volunteer to sit with the one needing care (masked and a bit distant) for an hour or so.
Mainly, think about their burden—not just that of the one needing care. Physical and emotional support is what they need most.
I get plenty of sympathy, but people often overlook how Chris has to deal with the physical realities of a disabled wife and the unrelenting mental anguish of watching me fight with challenges day by day.
Last, all caregivers reading this—we cared-for love all of you. Thanks for everything you do.