If you have Alzheimer’s disease, you quickly realize that it can overwhelm your entire life. There are days when I feel like Alzheimer’s wants to control every aspect of my existence. It takes away the independence that healthy people take for granted.
Last December, I faced a scary situation while driving that could have been tragic. In that moment, I realized I could no longer safely operate a vehicle. Actually, my Alzheimer’s disease made the decision for me; I had to stop driving. While it was the right choice from a safety perspective, losing that freedom has enormous implications. Walking, public transportation, and Uber are the driving alternatives I now use frequently.
The effect Alzheimer’s has on my memory impacts many everyday activities, such as preparing meals, shopping, reading, writing, and taking leisurely walks around our neighborhood. I adapt as much as possible. For example, I keep a tracking app on my phone so Linda knows where I am at all times. If I get lost or forget how to get to a specific store, she calls me.
These limitations and inconveniences naturally add to my feelings of sadness, anguish, and depression. I recently wrote about how the easy path forward would be to give up, let the disease naturally progress, and eat donuts all day. As much as I love Krispy Kreme donuts, I am not a quitter.
I realize that hope is the answer.
I am a realistic person. Beyond that, I need provable facts. This is why I enjoy research. My form of hope must be centered on the harsh reality of my Alzheimer’s disease. Traditional, passive hope does not work with an incurable illness.
Hope is both an emotion and a way of thinking. We recognize hope when we feel it and when we need it, but it is often difficult to define. In times of uncertainty and adversity, hope is crucial to happiness. For me, hope is not optimism - which is merely a belief that everything will magically work out. Hope is much more active. It is a feeling and a mindset that you must work at to achieve your goals, despite the uncompromising circumstances of this disease.
Faced with the numerous consequences of Alzheimer’s, it is impractical to hope that everything will suddenly be fine. Instead, I decided to narrow the focus of my hope. The big picture is just too damn overwhelming.
I hope for many small things every day. Sometimes that hope is only for something in the next hour. I consider these “micro-hopes.” When I wake up in the morning, I hope I have the energy and clarity of thought to make a cup of coffee. Later in the day, I hope for quiet moments to appreciate the love and support Linda provides.
On a larger scale, I translate hope into action. Hope is a choice I make to reclaim control by doing things like writing this blog post. I hope our plan for financial self-sufficiency and sustainability is successful. Every day, I hope my writing provides value that will motivate my readers to support me.
True hope must be supported by action. I must have the will or desire to do something, as well as a realistic pathway to move forward. Finally, I must cultivate the knowledge of how to reach my desired outcome.
My Alzheimer’s experience has taught me that hope is not an endless commodity. I certainly get discouraged. Feelings of despair, sadness, and fear often creep into my thoughts. I have learned that fear and despair are much easier to fall into than hope.
The pathophysiology of Alzheimer’s doesn’t give you options you can select, like flavors of ice cream and donuts. Alzheimer’s disease controls my brain. The disease decides how I feel, what I remember, and eventually, it seeks to claim every aspect of my life.
Yet, choosing hope makes me feel better and strengthens my resilience. Hope isn’t a given; you have to actively build it, pair it with action, and fight for it every single day.
A Note from Greg: Researching and writing these updates takes hours of deep focus each day, but it is how I fight back against this disease. If this essay provided value to you or offered a new perspective on resilience, please consider supporting my work. A small contribution of $5 a month helps Linda and me sustain our path forward and prepare for future care. Thank you for holding hope with me.
I appreciate your essay on hope. I'm in early Alzheimer's too and I'm not a naturally hopeful person. I'm working on developing mindful, intentional hope. I like your idea of recognizing micro-hopes.
Yesterday I had a complete and total meltdown at the neurologic therapist. This isn't my first meltdown but it's the first one anyone has witnessed. It wasn't pretty. I heard the whispered conversation in the hall about whether I should be allowed to drive home. I was less than a mile away from home so it didn't really matter. I could have walked. The hushed conversations behind my back are becoming a hallmark of my Alzheimer's journey.
I live alone and that creates a slippery slope of relying on my own judgement. Everyday is a mental challenge. If I want to get something done, I have to figure it out myself. That kind of challenge is good for my brain. Being alone also unfortunately leaves me vulnerable to slipping into a pit of hopelessness and despair. Every day is a new day and I try start with a fresh attitude. I guess all those years in AA hearing "One Day at a Time" ad nauseum are paying off again.
Take care. You are so fortunate to have your wife to help guide you. I know you appreciate her. Don't slack off on expressing that.
Linda
Well written and moving, thank you.
I lost my father to unspecified dementia a few years back. He gave up his car many years ago after getting lost in a shopping center that had grown and changed over the years. Later, he struggled to finish a book about his life’s work with my mother helping as editor. Smaller hopes and goals would have served him well. Keep writing.