Brenda Bouchard is certainly qualified to advocate on behalf of people affected by Alzheimer's. The 58-year-old Madbury, 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.
What is your personal experience with Alzheimer's disease?
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.
Can you describe the impact Alzheimer's has had on your family?
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. With each cruel loss, we face a "new normal" we couldn't have prepared ourselves for, and we start the never-ending process of re-inventing the wheel, as so many before us have done, to figure out how to cope with and manage the new change, the new loss, the new life. And just when we think we have our new normal figured out, we experience another change and begin the process anew. It's a crippling cycle.
Regular, everyday people like me aren't equipped to handle the complexities and the many moving parts to this disease. Alzheimer's impacts every aspect of a person's mind and body. It's relentless, and it takes caregivers and families along on the harrowing journey. It's devastating mentally, emotionally, physically, spiritually and financially. Our youngest child was 13 years old when Alzheimer's took hold of our lives and changed our family forever.
What has been the most difficult aspect of the experience?
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. How scary that must be, and there was no way for him to escape his thoughts. He was held captive.
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.
My husband and I were the love of each other's lives, best friends and great partners. That life — the life we knew, found comfort in and loved so very much — is gone, and we live in this altered and painful state. We're still married, and he's physically here with me, but at the same time I'm on my own and alone. What once was a shared marriage and partnership is now one-sided. I'm responsible for everything in our lives, and all that we used to share — from serious and silly conversations to laughter to decision-making and more — has somehow vanished. I'm his everything and he's still mine, but our lives are forever changed. After 10 years with Alzheimer's, it's sometimes difficult to remember who that Ken was and what our life together was like and, frankly, that it ever even existed.
And then there‘s the anticipatory grief caregivers and families experience on a daily basis. Our loved ones are physically here and in need of assistance and care from us every day so we need to be present in the moment with them. But we're constantly grieving — grieving their losses, every one of their losses, daily. We are grieving the loss of a person who's still here with us. We can't embrace true grief — the final loss — because our loved one is still physically here, needing us to survive.
What's been the most positive aspect of it?
My husband would always speak up when he saw an injustice, and I always admired that quality in him. 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. Then I saw the same things happening to the friends I was meeting in my younger-onset support group. I couldn't bear the thought of seeing another person go through what we've been through. That's when I made the decision to start speaking out.
We were very private people, and when my husband was diagnosed, he wasn't comfortable sharing his diagnosis. It was very challenging trying to live in a closet with this disease — trying to hide it. Yet, everyone knew there was something wrong. 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. And while I would never wish this journey on anyone, I've come to realize that with acceptance of our situation, which took a great deal of time and is still a work in progress, I now know it's a gift and an honor to care for my husband and my mother. When I'm with each one of them, in the moment, in their world, where they live, we enter a place of profound connection and beauty.
How did you end up becoming an Alzheimer's advocate?
I started advocating — and when I look back on it, I didn't realize I was advocating — when our local Massachusetts/New Hampshire chapter of the Alzheimer's Association asked me to come to our state capitol in Concord, New Hampshire, 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.
What are some of the activities you've taken part in as an advocate?
I live in New Hampshire, which holds our first in the nation primary. Our local chapter held an advocacy training in the spring of last year to teach us how to advocate for Alzheimer's at presidential town hall meetings. I asked my first question to a presidential candidate last spring; over the course of the summer, fall and winter, I had the great privilege of asking 14 of our presidential candidates what they plan to do to find a cure for Alzheimer's and for support for caregivers. Many of the candidates shared their personal stories with me.
I asked one candidate her first question at her first town hall meeting in New Hampshire. This candidate recalled our story and shared it as she traveled across the country. 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 Honoring Ken and everyone else who has traveled, or will travel, this path.
You've not yet attended the Advocacy Forum but plan to this year. What has sparked your interest in attending?
I'm very excited to attend the Advocacy Forum this spring. Having done some advocacy work in my home state, and as a member of the Alzheimer’s Impact Movement, I'm now anxious to advocate in Washington.
What are you most looking forward to when you make it to your first Forum?
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 much looking forward to meeting with elected officials in Washington 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 ideas and continue to be inspired.
How do you feel your advocacy efforts have helped the cause?
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.
Alzheimer's advocates have helped create successes like the historic $350 million federal research funding increase. What more do you think can be accomplished?
A lot! We need more funding for research to get us to the $2 billion mark experts say we need so we can see the end of this disease. We definitely need more support on every level for caregivers: resources, education, respite and more. I think we need PSAs about Alzheimer's and related dementias to halt the stigma, shame and embarrassment many people feel. And we most definitely need to change our culture and climate around Alzheimer's in our society.