What if Alzheimer’s patients and their families had more good days? Patients like my mom would have more independence to live life on their terms. My sister and I wouldn’t know the pain of having a mother that doesn’t remember her children and has no relationship with her grandson.
This doesn’t have to be a what if scenario. For the first time, there are Food and Drug Administration-approved treatments proven to slow the progression of Alzheimer’s disease. But another government agency, the Centers for Medicare & Medicaid Services (CMS), that is severely restricting access to treatments. This is a slap in the face for patients and families begging for more time together.
There is a unique kind of stress and grief that comes with being thrust into the role of caregiver to a parent with Alzheimer’s disease. Your world shrinks as career aspirations and other life plans are superseded by an incurable illness that steals your loved ones before your eyes. It’s an endless cycle of managing medical appointments, tough financial decisions, ensuring our mom is eating enough — all while trying to balance our own lives. Even just sleeping through the night has become nearly impossible. I wake up almost every hour to be sure my mom is still breathing. This is the reality my sister and I face as we share the responsibility of caring for our mother.
Some days are harder than others, but a constant truth prevails – we are losing our mother a little more each day. As my mother’s condition continues to deteriorate and she becomes increasingly nonverbal, I find myself thinking about the millions of families across the nation dealing with similar circumstances.
Alzheimer’s patients and their families deserve better. We should not have to beg a government agency to give a damn about to the people it’s supposed to serve. We shouldn’t have to highlight our personal and deeply painful experiences with Alzheimer’s to get their attention, but if we must, then we will.
I recently joined other Alzheimer’s advocates from across New York to rally at the CMS regional office in New York City where we demanded they reverse their decision and provide access to FDA-approved Alzheimer’s treatments. I’ll also be cheering on advocates across the country who are doing the same this month at every CMS regional office in the U.S. Everyone affected is invited to join.
While these new treatments won’t help my family, it’s not too late for others. According to the Alzheimer’s Association, each day CMS blocks access, more than 2,000 people transition to a more advanced stage of Alzheimer’s where they are no longer eligible for treatment.
Whether you are a caregiver, concerned family member or community advocate, you can make a difference. Let’s call on CMS to give people with early-stage Alzheimer’s more time.
Evelyn Alvarez is the Alzheimer’s Association ambassador for NY-15. She lives in the Bronx where she and her sister care for her mother with Alzheimer’s disease.
