Assistance during the Covid

Assistance during the Covid

As told to Shannon Shelton Miller

March 3, 2023 is Caregiver Appreciation Day.

My mother is 71 and lives with dementia. My older sister and I have been her primary caregiver for four years, and I am also married with two young children, ages 7 and 5.

Yes, I am a member of the sandwich generation, people who care for elderly parents and young children. Our duties have always been difficult, but during the pandemic they have become overwhelming.

When my mom was diagnosed in 2018, I checked on her when I was in town, took her to appointments, and went grocery shopping because she was no longer comfortable driving. Although my sister and I have noticed small mental lapses, we wanted her to remain independent for as long as possible.

In 2019, she was no longer able to live alone. 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 tension we were experiencing even worse. I know my mom suffered emotionally because she couldn’t go out as much or because her friends came to visit, and when she fell and broke her hip in October 2020, she accelerated her physical decline. She underwent surgery to repair her hip and has experienced episodes of delirium when she was in hospital but we couldn’t see her much as only one visitor was allowed in at a time. We have tried to stay updated through the online portal, but we are not sure if you have received the best rehabilitation possible. My mother now relies on a walker and she will probably never walk on her own again.

The experience of caring for someone with
dementia it is not well understood. Dementia is more than forgetting things; it can affect a person’s temperament, eating habits, and everything else. My mother is a different person than she used to be, and we as carers have to contend with caring for someone who, on any given day, may want to argue with you or may not even like you.

She and her mother at a family dinner in 2003.

There is also the anticipated pain of slowly losing a person while actively caring for them. You don’t have the space and time to grieve and process your feelings. At first we could have engaging conversations but now we have to work hard to try and keep her engaged.

My mother doesn’t laugh so much anymore and her emotions are different. We caregivers can only watch and grieve as the pieces of our loved one are slowly taken away.

After the surgery, my sister and mother moved to my grandmother’s house in Virginia so we could be closer and I could take a more active role in caregiving. But my sister and I were juggling a lot at home with our kids going to virtual school and trying to avoid Covid.

In early 2021, Covid hit home. My son was infected during his daycare and my husband and daughter also tested positive. We withdrew our son because we thought he would be safer at home and we wanted to limit possible exposure for family members who were at high risk for severe Covid. With everyone at home, it was hard to make sure my kids and mom were able to get the social interaction they needed. My sister, who had two school-age children learning from home, had the same difficulty.

Shu00e9 with her husband and two children, 2018She with her husband and two children, 2018

Covid has also limited many of the support services for caregivers. We tried to hire home care after he had a transient ischemic attack (TIA)which is similar to a stroke, on Mother’s Day weekend 2021 – even though she got better, she struggled with aphasia and needed more support than we could provide. But the price of home care skyrocketed as companies struggled to retain staff. Medicare offers support by sending helpers to showers every few days, but they called often because they or their children had Covid. There was a time when my mother got very ill and was unable to move so we had to do everything from getting her to the bathroom to showering to getting her dressed for the day.

Covid swept through my house again in 2022 and this time my sister and I got infected. Since we were all sick, my mother didn’t get much treatment because I couldn’t go to help and my sister had to isolate herself so as not to infect my mother. We were in a waiting pattern until all family members tested negative.

Before the Covid I had planned a big relaunch of my business, but once I had to look after 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 that you’ll be using your paid time off for care. I am the boss. If I don’t work, I don’t make any money.

And when you are a caregiver, your work is also never done. I know I should take care of myself so I can take care of others, but when others have so many needs, you put your dreams and desires aside. Even when you try to practice what is considered self-care, it gets a lot harder when you come home and have 10,000 other things to do. There were times when, after seeing my mother know that I had to cook dinner for my children, I got back in the car and started crying. I stop because I know I have to get myself together to take care of my family. There is never time to rest and I constantly feel guilty.

All I can do is accept being there because things can change so quickly. We didn’t know that Covid was coming. We don’t know how quickly or how slowly my mother’s dementia will progress. We moved her into assisted living this year and we don’t know what the future holds for her.

When I’m with my mom, I want to be with his. I’m trying to spend this precious time we have just living in the moment, together. When I’m at home with my husband and kids, I try to do the same thing: be present in the moment and not worry too much about what 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.

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