While both she and you share this daunting diagnosis, a critical distinction exists between your situations: she lacked health insurance, and being in Florida, she was also ineligible for Medicaid.
Life had been a constant struggle for her due to mental health challenges, yet she managed to work at a laundromat and sustain herself. My brother, who stayed in closer contact, informed me that she was doing okay, although I hadn’t spoken to her in two years.
It was my brother who insisted she visit the emergency room after noticing her incoherence for a couple of months. On that fateful day, he found her on the floor, babbling in her overheated apartment—her air conditioning had broken down during the scorching summer in South Florida.
At the hospital, the diagnosis of glioblastoma was confirmed—this ruthless tumor that can take everything from you in an instant. My brother reached out to me with the news, and I quickly donned my emotional armor, ready to help. From that moment, I became her caregiver, completely unprepared for the journey ahead.
Senator Thompson, your experience will differ significantly, thanks to your access to health insurance.
What Happens Next?
Just because you can access emergency services doesn’t equate to having proper healthcare. Once the immediate crisis passes, what then? What are the next steps?
Like you, my mother underwent surgery to remove the glioblastoma and was prescribed radiation and chemotherapy. Unfortunately, without insurance, she was unable to proceed with the recommended treatment.
No one—neither the hospital staff nor the social worker—provided me with crucial information. I later discovered that glioblastoma qualifies individuals for Medicaid, but it took me nearly three months to secure her approval.
Sadly, during that waiting period, she faced another hospital visit due to brain inflammation. The steroids prescribed led to significant weight gain, altering her appearance, which affected her self-esteem. The hope and energy she had post-surgery began to fade, along with her mental clarity.
Too Late
Ultimately, my mother was fortunate to qualify for a clinical trial at the University of Miami Miller School of Medicine, which showed promising results and, surprisingly, was approved by Medicaid. Yet, she refused to attend. I struggled to get her to see even the radiation oncologist.
Countless appointments were canceled as I urged her to go. Each day came with a new excuse, but deep down, her fear was the real barrier. She was convinced they were causing her harm, thinking I was complicit in her suffering.
Her paranoia intensified, often directed at me. It began sporadically but became more frequent as time went on. In retrospect, I wish I had been more understanding. It’s hard to imagine being that terrified of the very help you need.
I sincerely hope your final days are not marred by such fear. No one deserves that.
Dying in Peace
Those months would have been far less painful if she had had health insurance. I would have known what steps to take, and if uncertain, I would have had resources to guide me. Perhaps, had she received timely medical attention, she wouldn’t have ended up in the ER.
While it’s likely she would have still faced a short prognosis, the quality of her remaining time could have been better. She might have enjoyed more moments with her grandchildren, and perhaps—just perhaps—she would not have been so frightened.
In the end, it was Medicaid that facilitated her peaceful passing. Thanks to Medicaid, I was able to place her in hospice care. Watching her sleep away the days due to medication was difficult, yet it was a far preferable alternative to witnessing her decline in awareness.
My mother’s glioblastoma experience starkly contrasts with what you will encounter due to your health insurance. Don’t misunderstand me; I am genuinely relieved that you have access to necessary medical care. It’s a vital lifeline for both you and your family.
It has been three years since her diagnosis and two and a half years since her passing. Since then, I have surprisingly become an advocate, protesting against healthcare legislation proposed by your own party that threatens to strip millions of people of their health coverage.
With only 12,000 new glioblastoma diagnoses each year, few truly grasp the challenges you face. I do. Perhaps this is why I’m compelled to share this story.
Healthcare should be a right, not a privilege. Dying from cancer gracefully ought to be a fundamental right, not an exclusive luxury.
Senator Thompson has served in Congress for a considerable time, earning respect as a distinguished legislator in Washington, DC. He possesses the authority to shield individuals from undergoing the same harrowing experiences as my mother. I sincerely hope he embraces that responsibility.
In summary, my mother’s battle with glioblastoma highlights the critical need for accessible healthcare. Senator Thompson’s situation, with health insurance, will undoubtedly differ from hers. The narrative of healthcare access, especially for serious conditions like glioblastoma, underscores that compassion and support should be universal.
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