Jackie Brousseau-Pereira: Fighting for the first survivor

  • Jackie Brousseau-Pereira, second from left, with her family and friends at the 2016 Pioneer Valley Walk to End Alzheimer’s. SUBMITTED PHOTO

  • Jackie Brousseau-Pereira with her mother, Yvette, who was diagnosed with Alzheimer’s four and a half years ago. SUBMITTED PHOTO

Published: 9/17/2019 6:00:19 PM
Modified: 9/17/2019 6:00:09 PM

Sunday morning before my family got up, I wrote thank you messages to several people who had made donations to the annual Pioneer Valley Walk to End Alzheimer’s. Then, as we’ve done every year for the past four years, we piled into the car and headed to Holyoke Community College to join other caregivers, family members, health care providers, community members and folks who have been diagnosed with Alzheimer’s.

As always, the place was packed. People wore purple T-shirts with their team names or a picture of their loved one with the disease. Several dogs joined their families on the walk, some sporting purple kerchiefs or shirts.

It is truly a beautiful event. Solemn and celebratory at the same time. We got there a bit late and missed much of the speaking program, but we caught the start of the walk, led by one of the local high school marching bands.

The large crowd passed beneath an inflatable purple arch as we made our way around the college’s campus. It’s not a long or arduous walk for most people. It’s barely a mile and a half, but this year my heart felt particularly heavy.

This year’s walk slogan, emblazoned on many of the purple T-shirts around us, was “Fighting for the first survivor.” I love the sentiment and I want so much for there to be a medical breakthrough that can stop this disease.

Yet thinking about the possibility that some of the afflicted will be survivors also breaks my heart because I know too many families who won’t have the chance to claim survivor status.

My family and I walk to honor my mom, Yvette, who was diagnosed with Alzheimer’s four and a half years ago. She will turn 80 in March and she is too far down the path of the disease to be a “survivor.”

This year, we also walked in memory of a dear friend’s father who died just a week before our walk due to complications from Alzheimer’s. I recently heard from one of the most influential neighborhood moms of my childhood that both of her sisters are struggling with this disease.

While I was sending out thank you notes to friends who had donated, I got messages back from two of them. Each let me know that her dad had just been diagnosed. It feels like it’s everywhere.

Alzheimer’s disease ravages the brain. It takes away a person’s memories and their ability to focus on things for long periods of time. I remember when my mother could no longer follow the thread of her favorite TV shows, although she continues to watch them because the characters are familiar and bring her comfort.

Those with Alzheimer’s lose their ability to read and navigate tasks like shopping. Sometimes a person’s entire personality undergoes a change. People who were once calm and rational can become angry and combative.

Eventually, people with this disease will forget how to care for themselves, becoming incontinent and unable to communicate verbally. They will begin to lose motor function and eventually struggle even to swallow.

Before their bodies begin to break down, however, people can live with Alzheimer’s for a long time in the “middle stage” of the disease. This is where memories continue to fade and cognitive function declines. That’s where my family is.

I feel incredibly lucky that my mother still recognizes her kids and sometimes her grandkids. She still has a sense of humor and a (mostly) sunny disposition. But she also has no patience and no filter and that can be a challenge at times. She’s not the same person who raised five kids, earned her college degree at the age of 51, worked her way up from a job on the factory floor into an office, became a staunch feminist and started a women’s hiking group. That mom is gone.

Here are some things I’ve learned about interacting with those who are suffering from this disease.

■Banish the words, “Don’t you remember?” from your repertoire because no, they don’t remember and it’s cruel to point that out.

■Lying with kindness is fine if telling the truth might be devastating, even if it’s only temporarily. For example, “Is my brother dead?” “No, Mom, I don’t think so.”

■Cultivate the distraction techniques used with small children. Mom’s impatient in the waiting room? Show her pictures of your kids and dog. Tell her a story she’s heard a million times.

■Instead of expecting them to remember things, tell them stories about themselves. “Mom, one time when I was little, you were dying your hair at home and you chased us around with a bag on your head! It was hilarious!”

■Keep a sense of humor and don’t take anything personally. Your loved one does NOT want to have Alzheimer’s and to feel like a failure. As much as you can, reassure them that they are loved and needed.

■Today is the best day you will have with your loved one.

It’s important to share our stories, to shed light on the challenges we face as family members and caregivers for those with Alzheimer’s. It’s not something I want anyone to go through and definitely not alone.

Jackie Brousseau-Pereira of Easthampton writes a monthly column. She is the academic dean and director of first-year seminars in the College of Social and Behavioral Sciences at the University of Massachusetts Amherst. She can be reached at columnists@gazettenet.com.


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