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What It's Like to Watch Your Parent Face the Fatal Disease You Too Have Tested Positive For

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Every daughter wants to be a tireless advocate and support for their parent during their final years, however, that is an incredibly difficult undertaking for me. Despite everyone’s optimism about modern medicine, it’s pretty certain that as I watch my mom die I am getting a preview for my own death in 25 years.

My mom was diagnosed with Huntington’s disease six years ago, and earlier this year I tested gene positive for the same disease with a similar age of onset. Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities causing HD positive folks to lose their ability to walk, talk, swallow, and eventually develop dementia. Being an unbelievably rare disease, it is unlikely a cure will be found in the next couple of decades.

My mom is housed in one of the worst nursing homes in our community, a cost of being poor and ill in America. Every time I have to ask nursing home staff why she hasn’t been showered I see me with the unwashed hair unable to advocate for myself. The hallways smell like urine, and as you walk down the hall you hear patients calling out for help. Will I be the one screaming out for assistance but waiting and waiting to receive it?

This fall my mom developed a blood clot in her leg due to lack of movement. Because my mom’s disease is progressive, insurance doesn’t pay for physical therapy because there is no chance of improvement. My mom spends all day in her wheelchair with no physical activity. To cure the blood clot my mom will be on blood thinners in perpetuity. The staff in her nursing home is so overworked that I fear she will fall and bleed to death before anybody notices. I wonder what the state of long-term care will be like when my time comes.

Every time my mom tells me she’s lonely I wonder who will one day visit me. Our family is large; she has an additional daughter, six siblings and many nieces, nephews and cousins yet visits are limited to her birthday. I’m not having children due to the risk of passing on the HD gene; will my only visitor be my husband? Do I want to allow him go through the misery of watching his wife fall apart?

I believe in repaying the love and support my mom gave me all my life so I will never stop going above and beyond for her as her disease continues to progress, but it is unendingly difficult getting a possible sneak-peak to your own future.

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Thinkstock photo by Halfpoint

Originally published: February 7, 2017
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