5 minute read
THE BURDEN OF CAREGIVING
By Alice Draper
My father was reluctant to get a brain scan. “A waste of medical aid,” he said. Following a traumatic head accident in 2016, my dad became increasingly forgetful and experienced major behavioral changes. In 2018, the students he lectured at the University of KwaZulu-Natal in South Africa voiced multiple complaints that he wasn’t staying on topic during his classes.
Eventually, after being persuaded by family members, he got magnetic resonance imaging (an MRI) and was diagnosed with major cognitive disorder. And that was not all: his psychiatrist said that he had generalized cerebral atrophy.
We knew that this meant his brain damage would worsen. This year, a computerized tomography (CT) scan showed mini-strokes to his brain, symptoms of vascular dementia.
At the time of my dad’s diagnosis, neither he nor the rest of the family expected him to develop dementia. We didn’t think that a year from his diagnosis, he’d lose the ability to manage his finances. And that in another year, his forgetfulness would become a danger to his health.
I was under the impression that his condition was relatively stable. That with a little assistance — like help with managing his money — he could continue living alone. But increasingly often, my dad’s behavior raised concerns. He’d do things like phoning me to say his tv isn’t working. When I went to his house, I’d find that it was just turned off.
In early June of this year, I arranged to move to the same property as my father. While my dad struggled with loneliness during the pandemic’s lockdown, I worried about his safety living alone. On the day I planned to move in with my dad, I arrived to find a police van outside his house. He had spent the weekend in prison for accidentally shoplifting. No one in the family knew he was arrested three days earlier.
Living with my dad meant moving to a fairly remote farming community. While my days were previously occupied with writing and editing work — I now have my dad regularly interrupting my work, social phone calls, and even online meetings to show me an old photograph or tell me a story.
Understand Your Caregiving Role
The burden of caregiving — which 29% of adult Americans carry according to the National Alliance for Caregiving — can make self-care difficult. I would describe myself as a patient person under normal circumstances. But a few weeks after taking on the role of caregiving, I found myself snapping at strangers or becoming enraged by minor traffic delays.
To find out how to adjust to life as a caregiver and address this kind of behavior, I spoke to Leslie Sessley, a licensed therapist and social worker based in Decatur, GA, a city just outside of Atlanta. Sessley specializes in working with people who are taking on caregiving roles. She says that if left unchecked, symptoms like irritability and frustration can lead to depression, anxiety, or putting your loved one in a nursing home.
For me, understanding that my role as a writer would shift since I don’t have a surplus of uninterrupted time was an important part of this process. Luckily, since my father is mostly independent but needs assistance with driving, companionship, and certain tasks, I am still able to prioritize my career. Caregiving can place a much bigger burden for people whose loved ones require more intensive care.
Josie Ries, who lives in Michigan, is currently looking after her 94-yearold mother. “She walks gingerly with a walker but needs support. She has some dementia. She cannot wipe herself or clean herself at all. She eats by herself but cannot prepare food. She is forgetful and got up while I was out of the room for five minutes and fell and broke her pelvis,” Ries says.
This is Ries’s fifth month looking after her mother full time. She moved her mother out of her assisted living facility in February after some residents became infected with Covid-19. “Before the pandemic, I had a bit more time for selfcare, which included support groups. I also run to relieve stress, but the care of my mom (lifting) has caused me back issues! Now with my mom living here, I truly feel trapped,” Ries explains. “I find myself praying this ends soon, and then I feel guilty. I know my freedom will mean my mom is gone.”
Find Your Support System
Adjusting to a caregiving role is difficult, and usually isolating. The extra struggles of the pandemic and social distancing guidelines have added to this. Sessley says that to avoid burnout — which Ries might be at risk of — it’s important that caregivers assess ways they can accommodate their own needs. One of the first things she recommends caregivers do is to look at their support system. “I give folks a ‘village chart’ which goes through, you know, your village. Do you have mentors? Do you have teachers? Who are your confidants? You’re going to need all of those people as you shift into this role,” she says.
In my case, my mother visits occasionally which offers me some relief from caregiving. I also have a network of friends to reach out to for emotional support. For caregivers like Ries, whose loved ones are frailer, finding a sufficient support system can be harder. Right now, Ries has limited assistance from her adult children. However, she may need to hire professional caregivers to give her additional relief from the caregiving role.
Practicing Self-Care
What does self-care look like as a caregiver during a pandemic? For me, it’s about taking time for myself. This includes walking every day, meaningfully connecting with a peer at least once every two days over the phone or a video call, being able to schedule in time to write, and reading. But Sessley points out that depending on the type of care your loved one needs, these sort of activities aren’t always possible. “Some people can’t leave their loved ones. And so, they do need to get support,” she says.
I’ve also found in moments of frustration or confusion, explaining my situation on Facebook support groups for caregivers has helped me gain clarity on the situation. Sessley recommends online support groups in place of in-person group therapy during Covid-19. This includes things like an Alzheimer’s Support Group or arranging virtual meetings with other caregivers on sites like Memory Cafe .
Reset the Sails
One of the hardest parts of self-care as a caregiver is adjusting a mindset. Sessley says that understanding that caregiving is a whole new lifestyle and shifting your expectation of yourself and what you can and can’t carry is crucial in preventing burnout and depression.
