As told to Shannon Shelton Miller
March 3, 2023, is Caregiver Appreciation Day.
My mother is 71 and living with dementia. My older sister and I have been her primary caregivers for four years, and I’m also married with two young children, 7 and 5 years old.
Yes, I’m a member of the sandwich generation — people caring for older parents and young children. Our duties were always difficult, but during the pandemic, they became overwhelming.
When my mother was diagnosed in 2018, I checked in on her when I was in town, took her to appointments and bought groceries because she no longer felt comfortable driving. Although my sister and I noticed small mental declines, we wanted her to stay as independent as long as possible.
By 2019, she was no longer able to live on her own. She moved in with my sister in Baltimore, about four hours from my home in Hampton Roads, Virginia. I visited as much as possible to help.
When Covid hit, it made the strain we were experiencing even worse. I know my mom suffered emotionally because she couldn’t get out as much or have friends come to visit, and when she fell and broke her hip in October 2020, it sped up her physical decline. She had surgery to repair her hip and experienced episodes of delirium when she was in the hospital — but we couldn’t see her much because only one visitor was allowed at a time. We tried to stay up to date through the online portal, but we’re not sure if she received the best rehab possible. My mother now relies on a walker and probably won’t walk on her own again.
The experience of caregiving for someone with dementia isn’t well understood. Dementia is more than just forgetting things; it can affect temperament, eating habits and everything about a person. My mother is a different person than she used to be, and we as caregivers have to come to terms with caring for someone who, on any given day, might want to argue with you or might not even like you.
Shé and her mom at a family dinner in 2003.
There's also the anticipatory grief of slowly losing a person while actively caring for them. You don’t have the space and time to grieve and process your own feelings. In the beginning, we could have engaging conversations, but now we have to work hard to try to keep her engaged.
My mom doesn’t laugh as much any more and her emotions are different. We caregivers can only watch and grieve as pieces of our loved one slowly get taken away.
After the surgery, my sister and my mother moved to Virginia into my grandmother’s house so we could be closer, and I could take a more active role in caregiving. But my sister and I were both juggling a lot at home with our children attending virtual school and trying to avoid Covid.
In early 2021, Covid hit home. My son got infected through his daycare, and my husband and daughter also tested positive. We withdrew our son because we thought he’d be safer at home, and we wanted to limit possible exposure for family members that were at high risk for severe Covid. With everyone at home, it was hard to make sure my children and my mother were able to get the social interaction they needed. My sister, who had two high school-aged children learning from home, had the same struggle.
Shé with her husband and two children, 2018
Covid also limited many of the support services for caregivers. We tried to hire in-home care after she had a transient ischemic attack (TIA), which is similar to a stroke, on Mother’s Day weekend 2021 — although she got better, she struggled with aphasia and needed more support than we could provide. But the price of in-home care skyrocketed because companies had trouble retaining staff. Medicare offers support by sending people to help with showering every few days, but they called out often because they or their children had Covid. There was a period where my mother got really sick and wasn’t able to move, so we had to do everything from taking her to the bathroom to showering to dressing her for the day.
Covid went through my home again in 2022, and this time, my sister and I both got infected. Because we were all sick, my mom didn’t receive much care at all because I couldn’t go over to help, and my sister had to isolate so she wouldn’t infect my mom. We were in a holding pattern until everyone in the family tested negative.
Before Covid, I’d planned a big relaunch for my business, but once I had to care for my children at home and my mother, everything had to stop. I developed anxiety and struggled as a small business owner. When you’re running your own business, you can’t tell your boss you’re going to use your paid time off for caregiving. I am the boss. If I’m not working, I’m not making money.
And when you’re a caregiver, your work also never ends. I know I’m supposed to take care of myself so I can take care of others — but when others have so many needs, you put your dreams and desires on hold. Even when you try to practice what’s considered self-care, it becomes much more difficult when you come home and have 10,000 other things to do. There have been times when I'm driving back from seeing my mother knowing I have to cook dinner for my children, and I start crying. I stop because I know I have to get myself together to take care of my family. There’s never time to rest, and I constantly feel guilty.
All I can do is embrace being present because things can change so quickly. We didn’t know Covid was coming. We don’t know how fast or slow my mother’s dementia will progress. We moved her into assisted living this year, and we don’t know what the future holds.
When I'm with my mother, I want to be with her. I'm trying to spend this precious time we have just being in the moment, together. When I'm home with my husband and kids, I'm trying to do the same thing — be present in the moment, and not worry too much about what has happened or what might happen in the future.
Right now, everyone is Covid-free, and I’m grateful for every moment I get to spend with my mom while I still have the chance.