Guest blogger Blake Niver, 25, of Wasilla, Alaska, along with his brothers Grant, 28, and Bryce, 22, are caregivers to their mother who lives with Parkinson’s. Blake shares his thoughts on the importance of affordable and accessible health care and how to get involved as an advocate for the Parkinson’s community.
According to a study from the National Alliance for Caregiving and AARP, nearly 25 percent of all caregivers are millennials, ages 18 to 34. That’s not the typical image that comes to mind of a caregiver, but it’s the reality for my brothers and me.
My mother, Roberta, was 42 when she was diagnosed with Parkinson’s disease. I was in the fourth grade and still remember the exact moment she told me as we drove home from school — it’s a conversation I’ll never forget.
It took nearly a decade before my mother’s symptoms progressed to the point that it affects her daily activities. Now at 59 years old, she is not able to take the photos she used to love capturing, but she’s still working and counts herself lucky that her symptoms have progressed so slowly. However, as each year goes by, the financial and emotional toll looms larger and my brothers and I are concerned for what comes next.
My mother moved from our home state of Alaska and now lives in Minnesota with my brother Grant, a move prompted by access to more affordable health care premiums. She has insurance through her employer, but she might not be able to work for much longer. Soon, she will need to purchase private insurance and her pre-existing condition of Parkinson’s could subject her to unsustainably high premiums that my brothers and I will have to help shoulder. Right now, my mother is having issues timing her medications. My fear is that in the near future, she won’t be able to visit with a specialist who can help make adjustments to her daily therapies and subsequently, her quality of life will be severely diminished.
Just yesterday, I called Senator Lisa Murkowski’s office to tell her to vote “no” on the latest version of damaging health care reform circulating in the Senate. There are a lot tougher conversations to have than calling your senator and sharing your story. I think about what it must have been like for my mother to tell her three young sons about her diagnosis, and I’m heartened to do all I can to help her and others in the Parkinson’s community.
We talk openly as a family about the future and try to prepare as much as possible for the financial and emotional effects of my mother’s progressing disease. My brothers and I never expected to take care of our mother in our 20s, and we hoped that when our mother needed help, we’d be in a much better financial situation to support her. That’s why I feel compelled to do something now to stop legislation that could negatively affect my mother and my family for years to come.
Together, each of us can share our story of what it’s like to live with Parkinson’s or, in my case, to care for someone living with the disease. Make a phone call, send an email or share a tweet — tell your representatives how this latest health care proposal will negatively impact our families. Let’s open up conversations about the importance of affordable and accessible health care for everyone, especially for the Parkinson’s community.