I think for a moment my heart stopped. Had I really been told that my dad was being treated for Alzheimer’s? I hadn’t really had time to absorb the news when I heard Maria Shriver, who has worked to spread awareness of Alzheimer’s, speaking about her father who had been diagnosed with the disease. She shared some valuable advice that she had been given: to accept her father as who he was at the time, just as she would have had he not been living with Alzheimer’s. That one piece of advice, intended for someone else, saved me! That was the start of my shift in perspective -- that even with Alzheimer’s, the possibilities were limitless for my dad to have a meaningful life.
I imagine that I knew that there was a stigma about Alzheimer’s looming somewhere. But I had never known anyone with the disease, and I had no investment in the stigma. What I would come to learn through my experience with my dad was that the Alzheimer’s stigma is unfounded, for a variety of reasons, and is not only based on fear but also generates it.
Here’s what the stigma, and its negative ramifications, mean to me:
Shortsighted limitations => causes missed opportunities for quality of life
Taboo => thwarts supportive communication
Ignorance => results in fear
Genetic cause => exaggerates heredity factor
Memory erased => minimizes reinforcement of old or creation of new memories
Applicable to all => eliminates individuality and uniqueness
I had heard one piece of the stigma, that Alzheimer’s is a death sentence. In one pivotal moment, I had the thought “but perhaps Dad will die from something other than Alzheimer’s.” He had heart disease, and people died from accidents all the time. I didn’t want either alternative for my dad, but it opened up a new way of thinking for me. Alzheimer’s would be a factor in his life, but it might not have the final say.
Another pivotal moment for me was hearing that a doctor told Maria Shriver, “Once you’ve seen one case of Alzheimer’s, you’ve seen … one case of Alzheimer’s.” I was now ready to fight against any preconceived notion about life with Alzheimer’s, to find the uniqueness, and I refused to buy into the stigma. Here’s how I saw my mission:
Rise to the challenges and recruit a care team to help
Fight for what’s best for my loved one
Unknown may not mean unbearable
Solutions abound to solve problems that arise
Engage my loved one wherever they are in that moment
Different does not mean less
I committed to doing everything in my power to see that Alzheimer’s was going to have the smallest-possible negative impact on my dad’s life. I had the great clarity that my dad was still my dad, that he might be different, but not less. He was not a disease, and Alzheimer’s was not his identity. I would work to keep his life as close to the way he would have lived without the disease.
My shift in perspective would go on to dictate that Alzheimer’s was not going to define the man who loved me unconditionally, as Alzheimer’s did not have that power. It is a disease, not a man, and certainly not my dad. I knew that I was in uncharted territory, but I was going to find my way. What I found was that even when living with Alzheimer’s, there are limitless possibilities to live a meaningful life, and that was a reality for my dad.
Sadly, the stigma associated with Alzheimer’s continues to exist. My own mom didn’t want anyone to know that Dad was living with Alzheimer’s, because she feared that others would see him as less. That is heartbreaking. The stigma is unfounded, based on outdated information, before the importance of diet, supplementation, exercise and brain stimulation were understood. It doesn’t help that few want to talk about it. The stigma continues to propagate fear of being diagnosed with Alzheimer’s or of having a loved one diagnosed with it.
Understanding Alzheimer’s is important. Knowledge empowers you with a clear understanding of what you are facing and reduces fear so you can analyze your options with a clear head and make educated decisions. We need to come out of the shadows and talk about what Alzheimer’s is and what it is not.
I believe that my dad’s success in continuing to live a meaningful life with Alzheimer’s was largely due to my family’s rejection of the stigma and fear, and our willingness to shift our perspective from limitation and deficit to limitless possibilities. If it was possible for my dad to live a most meaningful life to the end with Alzheimer’s, then it is possible.