From Glenn in Massachusetts...

My dad and I only talked with each other about his disease once, and just for a moment.  This remains one of the biggest regrets of my life.  I had been living out of state for several years, and I easily explained away the early Alzheimer’s symptoms I noticed, thinking his confusion was laziness, since he was such a sharp man.  Upon his diagnosis, he was already significantly impaired, not able to follow simple three-step instructions or make up a sentence spontaneously, yet this news was a total shock to me.  He was so young, so healthy; he was so unlike the image I had of Alzheimer's.  I remember following him into his room upon hearing the news, wanting to make some sense of what was so incomprehensible to me.  A chat with my dad had always been a salve that helped soothe whatever turmoil I was going through; I wish I had been better able to reciprocate, to help him. After some resistance to talking about his diagnosis, he said to me, “Make sure mom is taken care of.”  I cried, and he cried, and that was the end of our talk and the only time we spoke, albeit indirectly, of his disease. 

On my visits home during the early stages of his illness, I was so eager to engage with him as the dad I always knew that I wished away the disease.  I had two young daughters, and he would play with them with animation and patience, pushing them on a rocking horse as long as they wanted, for example.  He played with them as if this were the only thing in the world that mattered. The disease progressed, and I was consistently slow to notice how much he was struggling. He was so good at masking  his limitations and I was so complicit in seeing only what was still intact--what I wanted to see.

In just a few years, so much of what had always defined my dad was lost to the disease.  Yet, in spite of this, it was always clear to me that he was trying his best, regardless of the stage he was in.  As he became incessantly worried, then paranoid and agitated, then aggressive—these things all so precisely opposite his nature—there was always still a dignity to be seen by anyone who was open to see it, and not just those of us who clung to memories of his past goodness.  Debilitating physical symptoms compounded his cognitive decline, and alleviating his physical discomfort became a 24 hour a day mission for my mom and everyone involved in his care.  He never slept in bed; he paced all night long; his hands were constantly clenched and soon deformed; he walked with his torso parallel to the ground, eyes cast down, so that he needed a bike helmet to protect his head.  When tired he would often just crawl, but he would never stop, save for occasional catnaps when exhaustion overtook him, and he would be at peace for a short while.  For the last several years of his life, he could not talk, but there was a “knowing” quality that he had—I don’t know what it was or how better to describe it.  You could hear it when he sighed and see it in his eyes.  To an outsider, it might have seemed as if Alzheimer’s robbed him of all his dignity, and surely it took away all those attributes most would think comprise dignity, but the truth is that he was always in there, a beautiful man, my dad, and that is the most painful part.

I often think that if people really knew the full costs of Alzheimer’s—all the money, yes, but much more importantly all the pain and the loss of those things we most treasure as humans—there would be so much more funding for research.  Yet, I still feel unprepared to write in detail about the tortures my dad had to withstand, and I don't think “torture” is an exaggeration.  Nor am I ready to post pictures of him from the last several years of his life.  Not because I believe this tarnishes him in any way—quite the opposite.  I am inspired by my dad’s dignity in the face of Alzheimer’s.  My reasons are more selfish.  It took me several years for the image I see of my dad when I remember him to be from when he was healthy and happy, and those are the memories I want to preserve and pass on.  When I look at the pictures we have from his last years, it is shocking to me now almost nine years after his death, seeing so clearly the “before” and “after.”  Alzheimer’s was my dad’s fate, and it is a horrible disease that we need to stop.

I also have not written yet about my mom, who managed more than a decade of trauma with love and grace and wisdom, all while coping with her own deep loss.  My mom is my hero, and she has modeled for me the very highest aspirations I have for myself.