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Each morning, my day starts at 2:30 a.m. That’s when I get up to transfer my husband John from his wheelchair to the bed. Every hour after, I turn him over so he doesn’t get bed sores.
I get up fully at around 6 a.m. when I wake up our twins. We have a boy and a girl who are one-and-a-half years old. I feed them, dress them, and drop them off at daycare. When I get back, it’s time to help John with his care. I set up his feeding tube and eye-gazing communication device for the day. Then we go to the bathroom and brush his teeth and shower. Next, I give him his medicine. Throughout the day, I tend to all his needs: I wipe his drool, bend his legs, transfer him from different rooms of the house.
When the twins aren’t in daycare, I simultaneously balance what is essentially life as a single mother with my duties as a caregiver for my husband. Most of the time, it’s more than I can manage.
My husband was diagnosed with ALS in 2014. I’ve been taking care of him for a time, but I’ve kept this schedule for the past few years, and I am worn out. I’ve developed medical problems of my own, and I cannot physically keep it up. I depend on help from a home caregiver.
The caregivers we’ve hired have started to support me with the hands-on care I now struggle to give to John. Their help and skill is the only way we have family outings; there is no way for us to get out of the house without it. Home care workers allow my family to function.
However, professional home caregivers are paid so little that it’s hard for them to afford to be able to do this job and provide for their own families. And if you do find a caregiver, they often don’t have access to the proper training to care for your loved one.
What I am realizing is that consistent and quality home care just doesn’t exist in Arizona. If they were paid a living wage, there wouldn’t be so much turnover. One recent caregiver came in 25 hours a week, but quit after just three weeks. Someone else filled in, then quit after a month and a half. If they had the necessary training to be able to care for people like John, I could have been able to make this all work.
I’ve had no other choice but to start looking at assisted living facilities for John. It breaks my heart, because I want to keep my family together, but if we cannot access continuous caregivers for him, he is not safe at home. I’m not strong enough to be the only thing he can depend on anymore.
I’ve been saying for years that the high rate of turnover among caregivers is a result of the demands of this job and lack of compensation. It’s emotionally demanding and physically difficult. The women and men who do this work don’t get paid what they are worth. Home caregivers are paid on average $17,200 a year and too often have very little training to handle the level of care demanded of them. Why would they stick around?
Families like mine already have enough on our plates, we shouldn’t have to worry about keeping our family together. We depend on our leaders to invest in our care workers.
I didn’t vote for Joe Biden, but his plan to invest in better pay and benefits for home care workers is necessary for families like mine. And it’s what caregivers themselves need. Anyone who cares about the American workforce and family values should agree that it’s time to invest in the home care industry.
One day, we’ll all need home care services. Everyone deserves the care that a wealthy person receives, or a president, or a celebrity, and access shouldn’t be a factor in the quality of care that we receive.
Unless Congress passes Biden’s care plan and invests in this industry, I’ll have no other choice but to move my husband to a group home. Our Senators Kyrsten Sinema and Mark Kelly can help make that happen. If they don’t, our twin daughters will grow up without their dad around. That’s heartbreaking.
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