Op – Ed: The Fight To Save Our Memories

By BRUCE J. AYERS

State Representative

Nearly 20 years ago, my family and I received the news that my mother, Beverly, was suffering from Alzheimer’s Disease.

That diagnosis changed everything for us. Alzheimer’s and other forms of dementia are all-encompassing, not just for the person diagnosed, but for their loved ones. All of a sudden, at the drop of a dime, our lives revolved around taking care of our mother in her time of need.

The struggle of watching a loved one lose their memory before your eyes is unthinkable for most of us. It is a process that robs you of everything. But on top of the emotional toll it extracts, it also creates significant obligations that many people simply cannot meet.

At least in this regard, my brother Chuck and I were the lucky ones. We both lived close by, and we were able to ensure that our mom could stay in the comfort of her own home throughout her battle. We arranged our schedules so one of us would be with her at all times, switching off nights sleeping at her house, spending mornings and afternoons driving her to appointments, and making sure for all the time in between that she was never alone. When she succumbed to her illness in 2009, she did so in the home where she built a life and raised her family.

Unfortunately, due to astronomical financial obligations that come with a diagnosis, that simple dignity is one that many people battling Alzheimer’s or dementia do not receive.

The Alzheimer’s Association estimates that over 5.8 million Americans are living with Alzheimer’s disease. It is the 6th leading cause of death in the country, with 1 in 3 seniors dying with Alzheimer’s or dementia. Alzheimer’s is among the most expensive diseases in the entire country, with the average lifetime cost of care for an individual with Alzheimer’s or dementia estimated at $350,174.

In Massachusetts, the most recent data shows that over 130,000 people live with Alzheimer’s. This places the burden of the disease not only on the person diagnosed, but on an estimated 337,000 family caregivers.

As a State Representative, my legislative agenda has been shaped in large part by my personal experiences. The issues I saw my mom face, as well as the issues I’ve encountered in my 35 years as a business owner converting vans for handicapped individuals, are why I always request to serve on the Committee on Elder Affairs.

However, it’s not only my personal experiences that shape my work on Beacon Hill, but the experiences my constituents bring to me as well. In 2017, I met with Mr. Jerry Ceurvels, and with his permission, would like to recount his story.

Jerry had worked for many years as a Quincy firefighter, and with his wife Jeanne had raised two kids. His life was turned upside-down when Jeanne was diagnosed with early-onset Alzheimer’s, at just age 51.

Jeanne’s diagnosis changed her life and the lives of her entire family. Instead of planning their retirement together, Jerry and Jeanne were forced to make plans for her impending medical needs – with scarce options. Their struggle uncovered a loophole in Massachusetts law that does an injustice to those who face the greatest challenge of their lifetimes.

MassHealth operates the “Frail Elder Waiver”, which helps cover costs for residents who require nursing home-level care; it allows them to receive those services at home, rather than in a nursing or assisted living facility. However, it sets a minimum age requirement of 60 years old – a threshold Jeanne still had 9 years left to meet at the time of her diagnosis.

 

Jerry and Jeanne were faced with even more complications in an already unthinkable situation for their family. Aside from the age requirement, Jeanne met all other criteria to receive services through the Frail Elder Waiver. When they asked MassHealth whether there was anything they could do, they were informed that the only way Jeanne could qualify under the age of 60 was if she were single.

In other words: get divorced, or don’t receive coverage for the services you need.

For Jerry, divorce was not an option. He used up all of his paid leave at the fire department, and had to take an early retirement as Jeanne’s disease progressed. He faced significant financial struggles that will impact him for the rest of his life – and while he kept his wife at home for as long as he could, she is now in a full-time care facility.

Jerry still visits his wife every day. Her condition continues to decline, while the services she needs drains her loved ones of their financial stability.

After hearing Jerry and Jeanne’s story, I filed bill H598, “An Act relative to early-onset Alzheimer’s disease”. This bill would simply get rid of the age requirement of the Frail Elder Waiver, so those diagnosed with early-onset Alzheimer’s or dementia under the age of 60 would not be left behind.

This is a small population, but one that is desperately in need. They deserve to stay in their homes – and their loved ones deserve a safety net to ensure they don’t experience significant financial hardship.

To date, 119 of my colleagues have joined me as co-sponsors of my bill – the 98 State Reps and 22 State Senators who have attached their name in support reflect a majority in both chambers. The bill was heard before the Committee on Elder Affairs, and I joined Jerry Ceurvels in providing testimony; it has since received a favorable report, and is moving forward in the legislative process.

There is further reason for optimism, as in 2018 Massachusetts passed a first-of-its-kind omnibus bill that devotes significant funds to Alzheimer’s and dementia research. While we still have a long way to go to find a cure, we inch closer and closer every day.

If you believe, as I do, that people impacted by early-onset Alzheimer’s disease deserve better, we need your help: now is the time to spread the word. No family deserves to lose a loved one this way, and insurmountable medical expenses simply add insult to injury.

I know from personal experience that Alzheimer’s is a thief with a 100% success rate. It has stolen loved ones and irreplaceable memories from countless people, with millions more still to be impacted. We cannot let it steal their financial stability as well.

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