Caregiver Story

In 2016 my ex-husband sent me from our home in SC to live in CO with my mother. Originally, it was supposed to only be for 6 months, but that changed when he filed for divorce. Leukemia took my balance, my ability to swallow, my motor skills and made my speech incomprehensible. I needed help with everything. I had a feeding tube placed when I lost my ability to swallow but I couldn’t feed myself. Both of my parents worked, so we needed to find a caregiver. Luckily, a coworker introduced my mom to Laura who would care for me 5 days a week.

We quickly learned that having a caregiver was expensive. We could only afford Laura from 9-3 on weekdays. She would come and get me out of bed and put me back in bed at three, where I would stay till 6 when my parents would get home and would get me out of bed again.

Laura would drive me to weekly physical, occupational and speech therapy along with numerous doctor appointments. It’s rare for a caregiver to drive me places but it was very helpful.

I had to relearn everything and Laura helped me with daily exercises covering speech, motor skills, and swallowing.

I now live alone having learned to feed myself. I am visited 5 days a week by caregivers who do my laundry and housekeeping and anything else that I need help with. I have become very independent but my ability to live alone is only possible with direct care workers. I have lived alone for four years and in that time, I have had 15 different direct care workers. Two of them I call friends now. Over the years, I have seen how important direct care workers are, but I have seen how undervalued they are in society. They receive low wages, usually no benefits and they rarely have opportunities for career advancement. We as a nation are experiencing a shortage of direct care workers. I have struggled to keep caregivers and many of my friends with disabilities are trying to manage without caregivers, which is dangerous.

Society must do better and value direct care workers. The direct care worker shortage is already a crisis. We have to make direct care work a viable career and not just a low-wage vocational job.