Why I Started Stop Alzheimer’s Now

By December 8, 2015Share Your Story

Shaun McDuffee

Why am I so passionate about Alzheimer’s? This disease has hit my family hard, claiming four of my closest family members. Both of my grandmothers passed away with it. My mother and father both suffer from it now. Ironically, I can remember both my parents saying numerous times how they prayed to never end up like their parents… yet they have still fallen victim to the same disease.

I was fairly young when my grandmothers showed the first signs of Alzheimer’s. Our family simply noted that they were forgetting a few things and tended to repeat themselves often. Both of my grandmothers eventually progressed beyond the capabilities of their children’s care and were moved to assisted living and then on to skilled nursing. Sadly, most of my memories of both of them were from their time in the skilled care facilities.

My Dad

Almost to spite his fear, my dad’s memory started to slip about 5 years after he retired. We always used to banter about sports, and he could rattle off statistics and stories with the best of them. He was an avid Chicago sports fan — Bears, Bulls, and Cubs all the way. As his memory waned, our conversations became increasingly difficult. He couldn’t remember players’ names and would repeat the same story, often 6-7 times in a row. Eventually, he quit watching sports altogether because they just no longer made sense to him. Instead he sits and plays a hand-held draw poker game for hours on end to pass the time. In 2010, my dad lost his driver’s license, which probably should have happened years earlier. Last year when I visited him, I spent the day driving him around to many of the homes he and his father had built together. Ironically, he could remember every detail about his living arrangements in the 1940s and 1950s, but he couldn’t remember if he’d had breakfast that morning.

My parents have been divorced since I was a young child. Thankfully, my dad is married to a wonderful woman who cares for him. Medication has slowed the progression of his disease. I’d be lying if I said I don’t sometimes wonder if that’s a good thing or a bad thing….to live a longer life at a fraction of the man you once were. What I wouldn’t give to debate with my dad about Michael Jordan, to reminisce about the Bears, or to call him crazy for his love of the Cubs.

My Mom

Last, but certainly not least, my mother has fallen hard to this disease. For those who know her, she has always been an intelligent and active person. She served on almost a dozen boards in her hometown of Portage, Wisconsin, and chaired most of the major fund-raising events there for over 30 years. She was always fearless when it came to approaching people. And, she was a whiz with numbers, money and balancing budgets.

Four years ago, my mom required triple bypass surgery. We learned that one of the not entirely uncommon side-effects of this surgery is an increased risk of Alzheimer’s. Immediately post-surgery she had trouble with her memory and was easily confused. For many bypass patients this gets better with time, but she continued to struggle even four months after the surgery. One evening she asked me if I knew what time it was on her alarm clock. When I asked her what time she thought it was, she confessed she could no longer understand the regular clock face.

I told her she really needed to talk to her family doctor when she got back to Wisconsin. I also suggested that she should consider moving to Texas to be closer to us as we were her only remaining family. She purchased a second home here with the intention of going back and forth.

During her first winter in Texas, I realized driving was a problem. She has never been great at directions, but this seemed to be something more than that….there was a real fear of getting behind the wheel and finding her way in a new place. We eliminated her need to drive.

About the same time, her local physician put her on a drug to stabilize the Alzheimer’s. That was two years ago. Unbeknownst to us until recently, she was mis-managing her medications, sometimes double- or triple-dosing in a day because she could not remember if she had already taken them. When she returned to Wisconsin this past spring, the mis-management made her ill, and she decided on her own to just quit taking them altogether.

Without the medication, the Alzheimer’s quickly progressed. I received four calls within a week from friends in Wisconsin letting me know something was drastically wrong.

I flew to Portage to see her. She never answered her phone because it was always dead and/or lost. When I arrived at her house, I was horrified. It was infested with bugs, and there were spider webs everywhere. Many of her Oriental rugs had been completely eaten away. My Mom, one of the biggest neat freaks I have ever known, was clueless to this. In addition, she had become a shut-in, rarely leaving her house and never socializing with others.

The hardest thing I’ve ever done is to tell my mother that she could no longer live on her own. It was gut-wrenching for me and for her. She needed daily help with her medications. She needed prepared meals. She needed a cleaning and laundry service. She needed to no longer have to worry about her finances. And, most importantly, she needed to be around people again.

The Cost of Alzheimer’s

The financial impact of Alzheimer’s is astronomical. Care for both of my grandmothers during the time of their illness until their death totaled more than $800,000. My mother’s care will be close to $100,000/year, and she could very easily live another 10-15 years. The real irony of this story is that I am in the financial services industry. I had approached my mother 15 years ago about obtaining a Long Term Care policy, even offering to pay for it. All she needed to do was sign the paperwork. She refused. I argued with her for months, and she wouldn’t budge, insisting she didn’t need it. Fifteen years later, the cumulative premiums for her policy would have been less than the cost for six months of her current care! If you are in your 40’s, 50’s or 60’s, please purchase Long Term Care Insurance if you are able. Don’t assume it won’t be necessary or won’t happen to you.

As horrible as the financial impact can be, the emotional toll is often too difficult to measure. My mother has known for quite some time that she is no longer capable of many things, yet she has worked very hard to hide it. This disease is slowly pecking away at her dignity and her pride. As a child in a family of Alzheimer’s patients, the disease has stolen many of my good memories of my grandmothers and my parents. As much as I want to remember them as they were earlier in life, I have a hard time setting aside the childlike behavior that Alzheimer’s has brought to their later years.

My future?

So, with Alzheimer’s attacking both my grandmothers as well as my mother and father, I’d be lying if I didn’t say I feel my fate is sealed. Research shows that a family history of Alzheimer’s Disease, especially on your mother’s side, significantly increases the risk for developing this disorder. There’s no guarantees I will develop the same condition, but the odds are not in my favor.

So why am I walking, you ask?

I am walking for my father’s mother.

I am walking for my mother’s mother.

I am walking for my dad.

I am walking for my mom.

I am walking for me

and, I am walking for my wife, Kristin, and my children, Sophie, Ingrid, and Annabel.

Please join me in this fight. If you don’t already know someone affected by Alzheimer’s, it’s only a matter of time.

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My mentor, Phil Richards, shared a quote by Margaret Mead which has always resonated with me, I hope it resonates with you:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

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