My Turn: Working mothers know the importance of quality in-home care

For the Monitor
Published: 6/5/2021 8:00:14 AM

For 20-plus years as a nurse, I have treated many patients with dementia, mostly grandmothers and grandfathers. I never thought I’d live to see a child of mine develop the illness. However, two years ago, my 31-year-old daughter Alyssa was diagnosed with frontotemporal lobe dementia. My family’s lives and careers completely changed.

Alyssa is the second oldest of my six children. All her life she’s been brilliant, an overachiever. She worked with the CDC in public health while pursuing her master’s degree at Emory University. In 2017, she was living and working in Pittsburgh, Pennsylvania with her longtime boyfriend while employed in the infection prevention department of the University of Pittsburgh Medical Center. One day, she called and said she wanted to uproot her life and move back home with us in New Hampshire.

I didn’t really understand the reason at the time. We noticed some differences in her behavior, she didn’t want to work and decided not to drive anymore. After about a month of living at home, she refused to shower or prepare her meals. Eventually, we had to admit her to the hospital against her will for an emergency psychiatric evaluation.

Brain scans showed atrophy of the frontal lobe. I had seen scans like this at work. I didn’t want to believe it. I thought, people that young rarely get dementia, and there’s none in the family. Just six months later, she was officially diagnosed.

As her condition worsened, we were no longer able to leave her home alone safely. I had to move to a place that would suit both of us so she could live with me. I work full time, so I needed to find her a home caregiver during the day. Unfortunately, the caregiving industry is underfunded and also understaffed. This lack of investment not only affects their own families but also the families who want to hire them.

New Hampshire has a tremendous shortage of in-home health workers. It took a year and a half to find an agency, and the workers aren’t available full time. We’d have a caregiver one day and they’d quit the next. We went through three different caregivers in the first six months. One caregiver called the morning she was scheduled to work and said she couldn’t afford to come back because the pay was so low. Another was in the job while she was applying to start a more stable career field.

I don’t blame them. On average, home care workers make $17,000 a year and many do not get paid sick time, vacation time or affordable healthcare. They were all moving on to better-paying jobs, for the sake of their families and loved ones.

For mothers like me who have children with medical complexities, the responsibility often falls on us to drop our careers and care for our children ourselves. The Biden Administration has a solution for this. The American Jobs Plan will invest $400 billion in the caregiving industry, which would improve the pay, benefits and training of professional home care workers and ensure they have the right to join together in a union.

There’s always a feeling of insecurity when you leave your loved one home with someone you don’t know. Every time a phone rings, or you get a text message, your heart skips.

I and my five other children had to take turns watching Alyssa. All of my children are in their thirties trying to hold their own jobs and raise their own children. Even though we each have FMLA through our jobs, we’re constantly playing catch up at work because at any moment we might need to rush home and care for Alyssa.

As a nurse supervisor, I often have to pick up slack at work. I might have to fill in for a sick staff member, but then I get a phone call from home about Alyssa and I have to leave abruptly. Not having caregivers has damaged how I’m seen by my employees. It makes me look unreliable.

Now, thankfully, we have finally found a consistent caregiver and it’s making a big difference, but we still cannot get her full time as she’s stretched thin with other clients. Alyssa’s dementia is rapidly worsening. The younger the person, the more quickly dementia progresses. In 2017, she was able to drive and feed and dress herself. Now she can no longer communicate. She eats with her hands and needs help getting dressed. Access to full-time and quality caregivers will become even more vital in time.

My family and others like mine who have children with medical complexities desperately need Congress to invest in the caregiving community. For the sake of our loved ones and the careers we need to keep, I hope that they will.

(Jamie Villers is a nurse. She lives in Concord with her daughter, Alyssa.)

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