Too Often, Daughters Are Family Caregivers. Better In-Home Care Options Would Change That

Without access to in-home care, women tend to take up the unpaid responsibilities of caregiving. In my family, it fell to me—the oldest daughter. 

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The Build Back Better plan will carve out $150 billion to help reduce waiting lists for in-home care services and improve pay for low-wage in-home care professionals. (Ryan Adams / Flickr)

When I was little, I wanted to show my grandma what AirPods were. When I gave them to her, she became lost in the song, singing along with the music playing in her ears. She completely forgot I was there.  

Salma lived with me my whole life. I would call her “bōin” which translates to “sis” in our native Bangla language. She would always laugh at that. She was a close friend with childlike qualities, while I was like a little adult from the age of six. When your family is low income, you grow up fast. When you’re expected to take care of your aging grandmother, you grow up even faster.  

Our place in New Jersey was home to me, my younger sister, my dad, my mom and my grandma. It was up to me to take care of her, because my father and mother worked 80-hour weeks at our small business. I didn’t get to have the normal relationship that grandmothers and granddaughters do. I was actually shocked when I found out that my friends’ grandparents would pick them up from school, because I thought all kids had to take care of them at home. 

Every night I would take my grandmother’s blood pressure and give her medication for her diabetes. My parents and I prepared soft food for her that would be easier to swallow. Her bedroom was downstairs. When she needed something, she would ring a bell that we could hear upstairs. Almost always, I would be the one to answer her calls.  

In 2017, my grandmother’s health worsened. She began to forget what day it was, and how to get from room to room. Sometimes she would belt out singing randomly. The doctor told us she was showing clear signs of dementia. Soon after, she started wetting the bed at night. Because her needs had increased so much, my family tried to hire a home caregiver.  

Unfortunately, the state’s caregiving agencies were significantly understaffed, and all had waitlists. The only professional caregivers available to come in and take care of my grandmother were from private agencies, and those prices were unaffordable for my family. 

Most home care workers are Black or brown women who are drastically underpaid, and many are fleeing the profession. This has created a significant home care shortage for families that desperately need it. 

Without access to in-home care, it generally falls to women in the family to take up the unpaid responsibilities of caregiving. In the case of my family, it fell to me, the oldest daughter. 

At the time my grandma’s health began to worsen, I was in my junior year of high school, studying for the SATs and taking AP exams. I was really studious in high school, and was taking college-level courses. But that became increasingly difficult to balance while looking after my grandmother.

Salma became afraid to sleep alone, so I would sleep next to her. Her bed was so uncomfortable that I could never get a full night’s rest. She was also very religious, and would wake up very early to pray, which meant every day was an early start for me, too.  

All of this—the lack of sleep, my caregiving duties, the academic pressure—began to take a toll on my physical and mental health. I was always getting sick. As grandma became increasingly ill, I would constantly have to think about the inevitability of her death. I never really found chances to smile. 

This phase of intense caregiving went on for about a year. Then in October of 2018, my grandmother was diagnosed with stage four brain cancer. She passed in February 2019 at the age of 72. My family blamed ourselves for failing to perceive her illness sooner. We were exhausted and so involved in her daily care that we could not see the bigger picture of her well-being. If we had a caregiver, I know we would have been able to see the signs more clearly.  

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Mary Ellen Tolentino (right) helps her mother with Alzheimer’s in Austin, Texas, on June 26, 2019. (Jay Janer / Texas TribuneCreative Commons)

Congress has finally agreed on a framework for Biden’s Build Back Better Agenda. This includes an unprecedented investment in home care to expand access to caregivers by improving their pay and training. Nearly eight in 10 of Americans support this component. 

Now that the framework has been agreed upon, it’s time for Congress to meet the moment and deliver. We have to keep pushing forward until this bill passes. Families across the nation are struggling to find care for loved ones who are aging or have disabilities.  

There is no limit to how much work is put on the shoulders of women in a family. For ones simultaneously growing up, they are missing out on childhood and education because our health system is failing grandparents. This doesn’t have to be the case. Congress must invest in home care. Young girls and young women deserve to experience their childhood. 

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About

Shurupa Muzumder is a college sophomore who lives in Iselin, N.J., with her mother, father and sister.