Oct 272017
 

I met my husband Steven in an organic chemistry class in college. There were handouts coming down the aisle, and Steven, who was sitting to my left, received the last one for our row of seats. Before I could do anything, he quickly jumped over the rows to the front of classroom to grab a handout for me, a knight in shining armor! We have been together for 41 years.

Today, Steven is my care partner. Marriage isn’t an easy business – there are lots of ups and downs and the need to adjust to the many changes that come over so many years. My being diagnosed with Alzheimer’s in 2016 at the age of 65 was one of those changes. Although I am sure I ask Steven the same question over and over again, he never shows any frustration. I am so thankful to have him next to me. In fact, sometimes I feel like one of the luckiest people alive.

I understand the denial many people go through when receiving a diagnosis of Alzheimer’s or dementia, especially if they are still part of the workforce. Not only was I diagnosed after retirement – a slight silver lining – but my mom had an Alzheimer’s diagnosis as well, at the exact same age as I did. Knowing my family history with the disease, my formal diagnosis brought both sadness and relief.  I knew what was ahead and yet that also meant I could take steps to prepare myself for a different life, and I am grateful for that insight.

Unlike my mother, I never had the desire to hide my disease from anyone. Yes, people react differently to the news. Some can’t handle it, and treat you differently, while others – as I’d like and want it to be – treat me the same. You can’t ignore the disease and you can’t predict how someone is going to react to the news. You can only tell them and move on and live the best life you can.

When it comes to Alzheimer’s, it often takes a village.

I personally went through fear, depression, acceptance…all the standard emotions that come with this kind of diagnosis. I saw several social workers, which was enlightening because the people I spoke with knew exactly how to help me through my experience. I would encourage anyone with dementia of Alzheimer’s to seek out this kind of support. It can be as valuable as the support one can receive from a caregiver or care partner.

I also have found support throughout my community. From my experience participating in the Walk to End Alzheimer’s to the fantastic people from the Indianapolis chapter of Alzheimer’s Association, I am so thankful. I am in a walking club where I make positive one-on-one connections and I’m an active churchgoer, surrounded by people who care for me and who care about me. I come away from my encounters with this variety of dedicated people so uplifted – and more extroverted!

There is another caregiver in my life…

He is a “teenage” Labrador-Australian Shepherd mix and such a joy! To call my new pup, Jackson, energetic would be an understatement. Two times a day, I take him for a walk that releases his boundless energy and helps calm me down.  He doesn’t know that I have Alzheimer’s, and he doesn’t care that I do. He doesn’t change his demeanor around me and he doesn’t judge. He just loves me for who I am.

Care and love can come from so many places: my husband, my son, my friends, my extended family and my rescue dog, who in many ways rescues me. To be supported on this journey is so important, and I honor each and every person who has been a part of my journey. It’s not over yet.

About the Author: Mary received her Master of Science from the University of Illinois in reproductive physiology, and spent her career as a biologist, most notably working at the Indianapolis Zoo, studying the artificial insemination of African elephants. In addition to her work in the science field, Mary volunteered as a docent at the Indianapolis Museum of Art and was the editor of the Expatriate Magazine for American women’s Club in Belgium, where she lived for two years with her husband, Steven, and her son, who lives in New York City with his wife.

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Aug 302012
 

Courage is the thing you need most and the hardest thing to get when you’re faced with Alzheimer’s Disease.

Jordan, my partner of 17 years has younger-onset Alzheimer’s. His father and several grandparents had memory problems, so the diagnosis was not totally unexpected, but it is still hard to grasp that someone so young and vital is facing such a ravaging illness.

Since Jordan’s diagnosis four years ago, we’ve both experienced the stigma that is attached to this disease. At the time of Jordan’s diagnosis we were lucky to live in Seattle where awareness of Alzheimer’s is high. That helped us avoid many problems that I know others experience from the medical establishment. But we’ve each had to handle other issues. Memory problems in older people are expected and tolerated. Memory problems in younger people are often seen as a serious defect.

One situation that stands out in my mind happened on a visit to Florida. After his diagnosis Jordan had severe depression and anxiety, and he was taking a powerful combination of medications, which caused him to lose his balance. He decided to walk several blocks to the beach at sunrise one morning and fell. A police officer happened to be in the area and stopped in his car. His response was “Sir, Are you drunk?” Jordan responded “No. I have Alzheimer’s.” The officer repeated that he felt Jordan was drunk and drove away leaving Jordan on the ground.

My experience with stigma was at work. Because Alzheimer’s remains a diagnosis of exclusion, it takes a tremendous amount of testing to reach that conclusion. I was taking more and more time from my high-pressure job for doctor visits. Jordan and I were also emotionally reeling from new memory problems that would appear weekly. (At one point, Jordan put socks in the fridge.)  I decided to take a leave of absence. When I returned, I found that a shadow replacement had been hired, and I was forced to leave six months later.

Finding courage

When faced with discrimination you must have the courage to say “I’m here and just as important as anyone else.”  We all have weak moments but fighting the illness sometimes means fighting for yourself or your loved one. Breaking Past the Stigma of Alzheimer's: Rob Epp's Story

There is stigma or discrimination surrounding any serious illness. Just ask someone with Parkinson’s or cancer or multiple sclerosis. But, we’ve also have found that people are generally supportive when they are aware. Many “stigma moments” are really caused by ignorance. People don’t understand Alzheimer’s and many even don’t understand what it means to be chronically ill.

So often, people only think of Alzheimer’s as an end-of-life illness. Even in hospitals nurses will say “but he’s so young to have it.” Courage to change the public perception thru education and awareness is key. And it’s usually accomplished one person at a time through personal contact.

Silence is the enemy

Alzheimer’s Disease consumes a tremendous amount of energy and resources. Families are often exhausted by the sheer volume of care responsibilities. And yet this disease is very poorly understood so we also carry the burden of having to educate others.

Jordan quickly tells people that he has Alzheimer’s in phone calls and in person so they understand. He also has cards for this purpose. Family is kept updated about his condition and even the little ones are told what to do if there is a problem. But education is also reaching out to the public.

I find time to do advocacy for the Alzheimer’s Association. It’s not easy since I don’t have family to help care for him when I’m gone, but it’s essential to raise awareness and unite people in the effort to fight this illness and help the people who have it. If people understand then they won’t be afraid. And if they’re not afraid then there is no stigma – just the disease.

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About the Blog Author: Rob Epp is a full-time caregiver for his partner Jordan, who was diagnosed with younger-onset Alzheimer’s four years ago. They live in New Hampshire.

Photos by Shannon Power

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