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My Unsung Hero

July 4, 2014

By Mary Beth Wighton
By : Mary Beth Wighton, Person with Dementia
Date: 2013-03-03

It was all said by a box of Krispy Kreme donuts. Last night, Brianna (Bri) was at work at Walmart. She told Dawn that she was bringing home a surprise for me. Bri knows I like surprises. This morning when I went to make my coffee, I found my surprise on the counter. It was a box of Krispy Kreme donuts.

Of course your first thought will be, “Isn't that thoughtful.” For me, it is much more than that. That box of donuts, represents Brianna's undying love for me. As I gave her a big hug and a kiss, my 18 year old, transformed into a little girl of 7. She was that age when I met her for the first time. We were swimming at Laurel Creek park, and I would swim underwater towards her with my elbow above the water. I was pretending to be a shark. We laughed and I would do it again and again. Those were wonderful sun-filled days.

How quickly time has gone by. Brianna has grown up before my very eyes. We have gone through the trials and tribulations of growing from a young girl into a young adult. I still feel an immediate source of pride when I utter the words, “ daughter.”

Back in September of 2012, things immediately changed in our relationship. After the diagnosis of Frontotemporal Lobe Dementia (FTD), Brianna's responsibilities in the house changed. With my license being revoked, I look to Brianna to taxi me around to my appointments and pick up groceries. This is no easy task.

As my behaviour becomes more erratic, Brianna has learned to watch for warning signs. She now knows when I am becoming very tired to drive me home. Her learning, has come at a high price for her.

Recently, we were out and about, and decided to go through a drive-through to get a hamburger. For some reason I become upset with Brianna and while in the drive-through told her to stop the car. I was getting out. Before Brianna had time to do anything, I opened the door of the car, and got out of the slowly moving vehicle. I stomped ahead and went into the building.

As I was placing the order for hamburgers, Dawn called me on my cell. I told her I was mad. Eventually, I came out with a bag of food and got into Brianna's car. We never said a word to each other. Later, I was told by Dawn how frightened Brianna was when I got out of the moving car. She did not see my go into the building and had no idea where I had went. She called Dawn crying.

Last week, I heard an excellent analogy describing someone who has dementia. The analogy comes from Brydan (2005) who has had dementia for 10 years. She describes a beautiful swan gliding on the water while its legs are furiously paddling underneath. The beautiful swan above the water represents what most people see. It is those closest to me who are able to see me frantically paddling to stay afloat.

Brianna is sometimes “kicked” by my leg movements. She works very hard to support me in many ways. Sometimes, I notice these actions and tell her thank you, and other times, I do not.

Chris Wynn, whose Father had Alzheimer's disease produced a film titled: “Forget, Not Forgotten.” This film shows the effects of the disease and the impact on caregivers. Chris is now working on another project which will focus on young people affected by the disease. 

Later this month, Chris will be visiting our home to have an interview with Brianna. She will be one of the young caregivers featured in his new film. It should take about a year to make it. I wonder to myself if Chris is going to capture just the beautiful looking swan. Or, will there be clips of me paddling furiously while Brianna tries to support me.

I'm so proud of Brianna. Someday, when she reflects back on these years, I hope she is able to remember how much I love her and appreciate her thoughtfulness.