Mar 252016

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.

bbouchardHe, 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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  11 Responses to “Standing Strong on Shifting Sand: An Alzheimer’s Advocate’s Story”

  1. God bless you, Brenda Bouchard. Thank you for sharing such a personal insight into your life. You have put such a clear and powerful message into this Love Story, how can anyone doubt the importance of finding a cure for this horrible disease?!

    I feel as though I have walked a bit in your shoes, as we kept my father-in-law home with us as he made his way through Alzheimer's. There were times I felt like both my husband and I were going to lose our minds as we navigated through a disease we knew so little about, and got so little help with. We talk about it now that we were such novices as to what to do and how to do it, even though we researched and searched for every shred of information that would be helpful. Of course, it took it's toll on our marriage, but we hung in there. My husband had lost his mother to cancer just 5 years before, and his only sibling from an overdose while we were caring for his father. But, our love, like your's and Ken's was strong enough to prevail the mightiest storm. At the same time, I had to place my mother in assisted living, and try to be with her as much as possible.

    Life can be cruel, yet we were never promised a rose garden, were we? When you spoke of the support group, I could so easily relate. We attended one as well…first we were the 'newbies' and soon we were the callused seniors. When my friend's husband began on the path of Lewy Body Dementia with Alzheimer's, I brought her to the group. She did not want to go. However, once there, she realized these were the people that understood….these were the people that had walked in her shoes. I too pray first that my husband does not get this disease, though his father was one of four in his family that succumbed to Alzheimer's. And, secondly, that our leaders understand how very important it is to fund the research for a cure…NOW. Not tomorrow, but Today!
    You are my Hero, Brenda. God be with you.
    Sandi Hammerstrom Oliverio

  2. Thank you for your story. Helps fell not so alone with this. My wife started our journey at age 46. She is now 51 and is progressing into late stage. There doesn't seem to be much help navigating this with people I thought would be in place to help. I feel it is resting on my shoulders alone to sort out the constant daily struggles.

    • Tim: You can speak to a professional from our 24/7 helpline by calling 800.272.3900. They can also direct you to local resources and support services.

  3. An old friend came to visit he got off the bus in the wrong place and ended up in the hospital. he did get her I live in the Upper Peninsula of MI and has absolutely no family he was orphaned at a young age, his wife left him and moved to Iowa he had no idea what was happening she also took his 5yr old son. I am now his caregiver. Very new to all this and just trying to hang on, our nearest support meeting is 2hrs away.

  4. Thank you for sharing your story. My mother has alzheimer's and my sister and I share the responsibility of taking care of her. I don't know if either of us could do it full time like you. Its hard to do the role reversal of now being the parent and the parent being a child. The worse thing for me is when she speaks of not having anything to look forward to an no longer wants to live. She never talks about how she is feeling, but really didn't before the disease either. I just don't know what right words to say sometimes to her and feeling like I am failing. Please keep up the wonderful work you are doing to fight this awful disease. Glad you are there to speak up for caregivers like me and the many others. Bless You So Much.

  5. Great story! It's always inspiring to see relatives turn their loss into something positive for the community. I wrote a column yesterday about a playwright who has developed a one-man show based on his mother's struggle with Alzheimer's. Please feel free to share with your audience.

  6. thank you for sharing this. I'm 28, an only child and my 70 year old mom has dementia. I appreciate reading about what you and your family went through and knowing that i am not alone.

  7. Thank you! My husband was diagnosed at 60 and now 63 and I am not ready for what is coming next..he does not want family or friends to know as he watched his Grandmother and Mother with Alzheimers. We have only been married 11 yrs and have know each other since grade school. I hurt as I watch him struggle but he is too proud to let me know.

  8. Brenda,
    My husband was 55 when he was diagnosed and the progression has been swift, he is now 61. I have been his only caregiver for all this time and it has certainly taken its toll. I had to take a double demotion at work and go to part time to try and care for him. I created a pooled trust for him so that he could be entitled for Medicaid and he has been approved for 24 hour care at home. What I nightmare!!! I was originally told that I would get a split shift – 2 people for 12 hours each. I was never informed that this change was activated until an aide arrived at my home with a suite case announcing that she is my live in!! I don't have accommodations for a live in and it was suggested that I move my husband's bed into the livingroom so that I could give the aide his bedroom – not happening. Apparently it is cheaper for Medicaid to provide a live in than the shift work, meanwhile I am getting 3 hours of sleep a night because my husband frequently wakes in the middle of the night – I go to work at 3 in the morning and the live in can't get used to waking in the middle of the night to tend to my husband. The agency says that as long as an aide gets 5 hours of uninterrupted rest, I can request their assistance at any time but how do you "make" someone get up in the middle of the night, be sure they will be attentive and not fall asleep and oh yes…be patient and compassionate to my husband….Pleease… I have had 8 aides, 3 different agencies so far and this is the first month. One aide didn't speak English at all and handed me her cell phone so that I could speak to her sister who informed me that the aide only speaks French! Another suggested that my husband should be heavily sedated because he is very angry. It happened that my husband told the aide several times not to placate him…she continued to do so… he then told her he is not an idiot…finally he started yelling at her to get away from him…that's not Alzheimer's that's outrage for an aide being disrespectful! Complain to Medicaid and you know what they say "oh that's unfortunately how most of the aides are…they're under paid and resentful" well great, lets keep lowering the bar to ensure that our loved ones get the minimal amount of care – and to think, this is a government run agency…where are the guidelines? Where's the training? It took 6 months for the process of applying for Medicaid, an error in paperwork created another 3 month delay..I was told by a Medicaid representative, "lady, you have no idea how overwhelmed we are" to which I replied "Lady, unless your a caregiver of a person with Alzheimer's, you have no idea what overwhelmed even means".

  9. Does any one relate to a senior wth dementia that will not give up afternoon cocktails? Which made everything worse…

  10. Your story has touched my heart and I could have written many of the same struggles you are dealing with. My sister has been diagnosis with early on set dementia also. It has been 4 years since the official diagnosis but , we now see the things we missed way before this time…She is now 61 and this is beyond heartbreaking for all of us. She lost her job, can no longer drive or really have any type of conversation , as I phone her everyday and try to see her as often as I can. i would love to have the opportunity to meet with you at a convenient time. I would love to be more involved in advocating for this tragic disease…Thank you for all the hard work you do for this cause…..we have lost a sister,mother, wife,aunt…

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