While both my mother and you share this daunting diagnosis, a crucial difference exists between your situations. My mother lacked health insurance and, residing in Florida, did not qualify for Medicaid either.
She had endured a lifetime of struggles, largely due to mental health challenges. At the time, she worked at a laundromat, just about getting by. My brother, who hadn’t spoken to her in two years, ultimately insisted she visit the emergency room. He noticed she had been acting unusually for months, and on that fateful day, he found her disoriented on the hot floor of her apartment, where the air conditioning had broken down during the sweltering South Florida summer.
At the hospital, they diagnosed her with the aggressive brain tumor that can take everything away from a person in the blink of an eye. When my brother informed me of her condition, I donned my emotional armor and rushed to the hospital, suddenly thrust into the role of caregiver without any guidance.
The journey my mother faced with glioblastoma was profoundly different than yours, Senator Anderson, primarily due to your access to health insurance.
What Happens Next?
It is a grave misconception to assume that merely having access to emergency care equates to having comprehensive healthcare. Once the immediate crisis is over, what then? What are the next steps?
Like you, Senator, my mother underwent surgery to remove the glioblastoma and was prescribed radiation and chemotherapy. However, without insurance, she couldn’t afford to continue her treatment. Shockingly, no one—including the hospital’s social worker—told me that glioblastoma is one of 88 conditions that automatically qualify for Medicaid. I spent nearly three months navigating through the bureaucratic maze to get her approved.
Sadly, before we could secure her Medicaid eligibility, she faced another medical emergency due to brain inflammation. The steroids prescribed caused significant weight gain, changing her appearance, and she lost a sense of self. The hope she had after surgery began to fade, and her mental state deteriorated.
The Struggle
Despite being accepted into a promising clinical trial at the University of Miami Miller School of Medicine—an opportunity her Medicaid eventually covered—she refused to attend any appointments. I found myself constantly canceling sessions, desperately trying to convince her to go. Each day brought a new excuse, but her real fear was palpable. She believed the treatments were harming her and that I was somehow complicit in this.
Her paranoia escalated, often directed towards me. Initially sporadic, her episodes became more frequent. Reflecting on it now, I wish I had shown her more understanding. I can only imagine how terrifying her reality must have been.
I hope that the final days for you, Senator, are not filled with that level of fear and anxiety. No one deserves such distress.
Finding Peace
The months leading up to her passing would have been profoundly different had she had health insurance. I would have known who to contact for guidance, and perhaps she would have sought medical attention much sooner, avoiding a trip to the emergency room.
While I understand that her time may still have been limited, it could have been easier and more peaceful. She might have found joy in spending time with her grandchildren, and perhaps she would have felt less frightened.
Ultimately, Medicaid allowed her to pass away with dignity. Because of it, I was able to place her in hospice care. Even though it was difficult to witness her in a medicated sleep, it was far better than watching her struggle through the loss of her mental faculties.
That’s my mother’s story of battling glioblastoma. Your experience, Senator Anderson, will undoubtedly be different, given your access to health insurance. I genuinely wish you well on your journey, just as I wish the best for your family.
It has been three years since my mother’s diagnosis and two and a half years since her passing. Surprisingly, I have become an advocate against legislation proposed by your party that threatens healthcare for millions.
With only 12,000 people diagnosed with glioblastoma each year, few truly comprehend the battle you are facing. I do. Perhaps my purpose is to share this story.
Healthcare should be a right, not a privilege. Dying with dignity should also be a right. Senator Anderson, you have served in Congress for a long time and hold a respected position in Washington, DC. You have the power to prevent others from experiencing what my mother endured. I hope you choose to use that power wisely.
Summary
This heartfelt letter reflects on the author’s mother’s struggles with glioblastoma, emphasizing the critical difference in healthcare access. The author shares personal experiences as a caregiver and advocates for the right to healthcare and dignified end-of-life care, urging Senator Anderson to use his influence for positive change.
Keyphrase
glioblastoma healthcare access
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