Caring for a Disabled Relative is a Full-Time Job
By: Cassius Corbin
Tags: Work, Health, Disability, Family, Life

The diagnosis took us all by surprise. My sister, a mother of two in her early thirties, had aggressive multiple sclerosis.

While not completely disabling for all of those diagnosed with the disease, MS in its aggressive form quickly took its grip on Rachell. Her legs grew numb. The numbness spread to her waist and down. Her speech is slurred and her vision blurry.

Rachell cannot drive. She cannot work. She cannot make her own meals, take her own showers, or dress. Within a year, my independent sister is now fully dependent on our mother and me.

Rachell’s dream had always been to work in the medical field. She received her medical assistant degree. Her main job for many months was caring for a dying woman with cancer. The hours were full-time, and she enjoyed the work of being able to help someone. Now it's her who needs the help.

“Multiple sclerosis involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS). The CNS is made up of the brain, spinal cord and optic nerves. “Within the CNS, the immune system causes inflammation that damages myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves, and the specialized cells that make myelin.” Source: National Multiple Sclerosis Society.

At the time of Rachell’s diagnosis, our father also was dying of cancer. My mother and I were employed full-time — Mom as an environmental tech at the county hospital and me as a news journalist for the local paper.

During my lunch breaks, I would rush home to care for my sister and Dad. They were weak — falling apart right before my eyes.

Even with walkers and canes and a wheelchair, the two often fell down. Panicked calls would have me racing home to lift Dad back into bed or Rachell onto the couch.

Neither was strong enough to lift the other up. They needed someone home full-time. Mom and I knew it.

Mom managed to get some time off work during the end of Dad’s life. I took shorter hours. We woke up in the morning, bathed him, fed him, and then I went to work. During lunch, I came home and fed Dad and Rachell and did any other necessary tasks around the house until the day Dad finally passed this January — an expected, yet heartbreaking, death.

Mom and I had to return to work. This left Rachell, still ravaged by severe MS, home alone.

But a moment of surprise caught us all off guard: Within weeks of Dad’s death, my boss sat me down and gave me the painful truth. He no longer could afford to pay me.

After years of nonstop working, I now would be unemployed.

Panic ensued.

I hit the unemployment line. I applied frantically to jobs. It took weeks before the $200-a-week unemployment rolled in, a harsh cut from my former $400-a-week salary.

We measured our options. A friend who worked as a home health aid mentioned I could care for Rachell and be paid. Since Rachell needed full-time help, the friend told me, why not let that helper be me?

I agreed.

We made calls and filed paperwork. Months passed before Rachell received the phone call back with her approval to receive a home health aid.

“You can have eleven hours,” the worker on the phone told her. “That’s it.”

Eleven hours.

Photo by AbsolutVision on Unsplash

The state would allow her to have a home health aid for eleven hours a week and no more.

My sister, who needs all her meals made for her, can only have eleven hours of help a week.

My sister, who cannot drive, can only have eleven hours of help a week.

My sister, who cannot shower or get dressed without aid, can only have eleven hours of help a week.

My sister, whose infusion appointments can take up to four hours alone to complete, who has two minor children to raise, who can barely walk to the bathroom herself, who must be driven over an hour one-way to see her doctors, can only have eleven hours of help a week.

Are you kidding me?

No one asks to be disabled. No one wants to rely on someone else for their daily needs.

Everyone wants to pursue their own interests, their dream jobs, but life throws us curveballs. We love our family, and often we must put our own needs aside to care for those we love.

While many states in the U.S. offer programs to pay caregivers of the disabled and elderly, all too many do not, or they offer too little compensation to survive on.

Our disabled citizens should be securely taken care of no matter what state they occupy.

I want to work outside the home. I want to be a journalist again on the hunt for the latest news story. But Rachell is more important than my wants. Her needs will always overrule my wants. She is my sister, and I love her.

Caring for my sister isn’t a 9–5 job. It is 24 hours a day, seven days a week.

No, this isn’t “being paid to stay home and do nothing.” I do not “do nothing” when I spend hours driving my sister to and from her doctors’ appointments. It isn’t “doing nothing” to sit for hours and hours in a cluttered hospital waiting room as she receives her infusion treatments.

It isn’t “doing nothing” to bathe her, feed her, clothe her, pick up her medications, help her use the restroom, grocery shop for her, care for her children, and much, much more. These are things people outside the home would be paid to do — strangers — when it is far more feasible and sensible for a relative to do it.

I refuse to put her in a nursing facility when I am more than willing to care for her myself. But bills must be paid — hers and my own — and compensation should be readily available. Eleven hours won’t cut it.

The government should encourage relatives to care for their own, and in that encouragement, the government should properly pay for the hours necessary to do so.

It’s hard enough living life with a disability, especially for those facing aggressive, debilitating diseases such as Rachell’s MS. But she shouldn’t have to worry about how her caregiver is going to survive, too.

Rachell deserves better than what the system is offering. All of our disabled citizens do.