Brenda Bouchard is certainly qualified to advocate on behalf of people affected by Alzheimer’s. The 58-year-old New Hampshire resident serves as a full-time caregiver for her mother with the disease, as well as for her husband, Ken, 69, who has younger-onset Alzheimer’s.
My husband was just 59 years old when our journey began.
He, like his grandfather, mother, seven aunts and uncles and two older brothers before him was diagnosed with Alzheimer’s disease. That was 10 years ago. My 89-year-old mother lives with us; four years ago, she was diagnosed with mild cognitive impairment. People with mild cognitive impairment have an increased risk of developing Alzheimer’s or another dementia, and that’s exactly what happened to my mother. Alzheimer’s has devastated our family. What was once normal for our family is no more. We’re missing an important link. Our lives are forever changed. Throughout the Alzheimer’s journey, everyone walks his or her own path. Life is ever changing in ways we never could have imagined — and not for the better. Alzheimer’s is a disease of behavior. With each change in behavior, people with the disease and caregivers alike stand on shifting sand. The ground beneath our feet is never solid. It’s always moving.
The most difficult aspect of this experience is the loss of my husband and my mother.
Their bodies and spirits are here, but their minds have been altered and the precious gift that was their memory is gone. It’s a slow, agonizing loss and very, very difficult for them to cope with and extremely painful for us to watch.
In the early stage of the disease, it was very difficult to look at Ken and know he was a prisoner in his brain. He was aware of what was happening. He knew he was losing his mind and would continue to do so — he knew what was to come. Through the middle stage, it was heartbreaking to be a helpless bystander as Ken lost his ability to drive and participate in all of the hobbies he loved so very much. He lost his independence. And then there was the sinking feeling as we stood by and watched him struggle to comprehend why he could no longer independently do so many of the things he loved, and there wasn’t a thing we could do to stop the march of Alzheimer’s or assuage the emotional pain he was enduring.
Ken is now in late stage. We’re very fortunate as Ken has great care and a lot of love surrounding him. He’s extremely happy in his new world, but I often wonder what the Ken of 10 years or more ago would think of his life today now that he can no longer take care of himself in any way. It’s heartbreaking to contemplate.
As I watched the grueling losses and changes this disease was wreaking on him and our family, I recognized I didn’t want to sit idly by and do nothing.
We were very private people, and when my husband was diagnosed, he wasn’t comfortable sharing his diagnosis. It was a very big decision to speak out publicly about Ken’s diagnosis because at the outset I felt I was betraying him. Initially, I didn’t realize that by speaking out, even in small ways, I was honoring Ken’s life and the person he was and also giving a voice to many people who are in the same situation and yet unable to speak out.
I never thought I would become an Alzheimer’s advocate, but out of all this loss and horror, I feel I’m joining voices with other advocates to make a difference. And we are making a difference. Every time we speak up and speak out, we’re changing the culture and climate around Alzheimer’s. We’re collectively making a difference in Washington by making them aware that we’re here and we’re not going to stop speaking up and speaking out until Alzheimer’s gets the attention it so greatly needs and deserves.
I started advocating when our local chapter of the Alzheimer’s Association asked me to come to our state capitol to testify on a bill that would put a plan in place for Alzheimer’s and related dementias in our state.
At that time, New Hampshire was one of only 13 states without a plan. I made three trips to Concord to testify on that bill over the course of a year-and-a-half. It was signed into law in August of 2014. It was an extremely satisfying experience to realize that by sharing our story I may have contributed to making a difference for people who are just starting their journey.
A local videographer made a short film about our journey titled “Honoring Ken." Our film has been viewed more 30,000 times and has made its way around the world to England, Pakistan, Australia and beyond. I also started a YouTube channel and a Facebook page spotlighting our advocacy work and everyone else who has traveled or will travel this path. This past summer, I met with one of our representatives and a representative from one of our senator’s offices in New Hampshire to discuss Alzheimer’s.
I’m very excited to attend the Advocacy Forum. Having done some advocacy work in my home state, I’m now anxious to advocate in Washington. I’m looking forward to meeting with elected officials and sharing my story and the heartbreaking stories of so many people I’ve met. I’m also very excited to meet other advocates, hear their stories of advocacy, learn from them, share my personal lessons learned and continue to be inspired.
I believe I’ve been, and continue to be, one spoke in the wheel of Alzheimer’s advocacy. We’re all working together to be heard, make a difference and make change. I feel, sense and believe we’re doing just that.
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