Columnist Jackie Brousseau-Pereira: Side effects of a pandemic

Published: 7/28/2020 4:22:29 PM

Just about two months ago, my mother walked unaided into the emergency department of a hospital in Rhode Island while my brother watched from his car. Because of the pandemic, he was not allowed to accompany her into the hospital. She had no idea why she was there.

My mom has advanced dementia from Alzheimer’s disease. She also has a number of other medical diagnoses: rheumatoid arthritis, high blood pressure, anemia and other related complications.

Despite all these issues, my mom had been living pretty happily at an assisted living facility. Within the past year she moved to their memory care unit where she interacted well with her peers and was active and engaged with staff. She walked around on her own without the aid of a walker and she was adamant that she was not going to use one.

At her assisted living, Mom was known for her sunny disposition, sarcastic wit and willingness to help anyone who needed it. My family has felt lucky that she has had this quality of life for the past several years and we’re grateful to the staff at her residence as well as her primary care physician.

Not that there haven’t been difficult times. Mom has had her share of hospital visits over the past five years, and because of her Alzheimer’s disease, my siblings and I would take turns spending the day at her bedside when these occurred.

She isn’t able to serve as an accurate reporter of her condition, so we’d take on that role. Having us there also cut down on her confusion, which meant she’d call out for help from the staff less often. It’s a system that worked well for everyone.

So, when she was sent to the hospital in May because she was dealing with a medical issue, we weren’t ready for the quick deterioration that followed. None of us was allowed to go see her and while we tried to be in regular contact with the hospital staff, it often seemed like the history and information we gave them was not being used or passed to the next shift.

When my mom ended up at a skilled nursing facility for rehab, the communication problems worsened. My siblings and I tried to stay on top of what was happening with her treatment and tried to assess when she might be able to return to her assisted living, but we often felt like we weren’t getting the whole story of what was happening. When we’d talk to my mom, she was confused and angry. Her declining moods got worse. She’d ask when we were going to come get her and we’d fib and tell her we’d be there soon. Not being able to see her in person was so hard.

After 40 days at the nursing home, she was sent back to the hospital with a fever and infection. The staff didn’t know she was able to walk and assumed she couldn’t. Because she was verbally combative, they gave her tranquilizers to keep her from disrupting other patients. When we’d call to talk to her, her speech was slurred and she’d fall asleep during the call. By the end of two weeks in the hospital my mom had regressed even further and was barely eating.

On July 13, the visitation policy in Rhode Island changed and I was finally able to visit my mom. I was the first member of my family to see my mom’s face in two months.

Her first words to me were, “Why can’t you just let me die? I just want to die.” My heart broke. We ended up having a bittersweet visit. She told me she loved me and all of the family. I’m not sure she knew exactly who I was. She fell asleep after half an hour.

I can’t fully blame the hospital or nursing home for my mom’s decline. The U.S. health care system is in a terrible state; nurses and CNAs are asked to take on more than they can handle and it’s not fair to them. But I’m sure if we had been with my mom, things would not have gotten so bad.

The rules preventing visitation are also reasonable and intended to protect a vulnerable population from getting coronavirus. It makes complete sense but that doesn’t make it any less devastating for families who can’t see their loved ones.

I hesitated to write this deeply personal account but I consulted with my siblings and they agreed to share our story. It’s important to talk about the secondary effects of this pandemic because they are far-reaching.

For some families, this prolonged period of instability has exacerbated mental health challenges. Others have lost their jobs and are struggling to put food on the table and keep the lights on. There are reports of a higher incidence of domestic violence due to the stress of lost wages and everyone being stuck at home together.

For my family, the fallout from the pandemic will likely mean that we will have to say goodbye to my mother sooner than we had anticipated. My mom won’t die from COVID19 but she will probably die sooner because of it.

Jackie Brousseau-Pereira of Easthampton writes a monthly column. She is the academic dean and director of first-year seminars in the College of Social and Behavioral Sciences at the University of Massachusetts Amherst.

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