First, Pat articulately and eloquently sums up how I lived through walking the Alzheimer's Path with Gregory. One doesn't "do good" to be patted on the back but it does feel good to be acknowledged. I miss you, Gregory. Together we did a good job. Thank you, Pat.
It's about time I tell you what I think of you. I've been saying it to other people, and it's past time to say it to your face.
This is not about your sense of humor, your collections, or your creativity. It's about your conduct as your partner of 35 years declined, from your soul mate to a manageable concern to a 24-hour caretaking job. This is about how your expectation of retirement companionship deteriorated to silent meals and bathroom supervision.
What I want to talk about is your unwavering love and devotion. Your resilience. Your composure, most of the time. Your acceptance, without hope. The management of your own frustration and disappointment.
When Gregory became confused about dressing, you labeled, and then later laid out his clothes. When he couldn't figure out how to plug in his shaver, you put arrows on the cord and the outlet. You engaged all your intelligence and creativity to help him. In private, you mourned each lost ability, in raw comparison to parents celebrating a child's milestones.
When those accommodations failed one-by-one, (or sometimes faster,) you supervised. When supervision didn't work, you did it. You demonstrated tremendous resilience as you devised ways to preserve whatever dignity and independence Gregory still had. You were, and are his touchstone. YOU are the one he looks to for comfort, stability, and anchor.
You've always been open about your feelings, and never critical of my questions. Once I asked you, how long could you do this? Your response struck me and stuck with me. You said, "I have the time. I don't need to go anywhere and I can take Gregory with me if I need to run an errand." You were saying, why not care for Greg at home indefinitely. I don't think I could ever be that generous.
But one day, that wasn't enough. One day, Gregory was not calm and compliant anymore, but agitated, unspeakably sad, and lashing out. Thanks to your preparation, you did not panic. You found him a place to be where he is comfortable. Now he is calm and happy again. Nothing about you changed. Gregory changed.
Through all of this, you cared for your extended family and friends too, by keeping us apprised, at least in broad strokes, of what to expect. You communicated your strong sense of what you need—support, acknowledgment, privacy, no need for suggestions. You never acted the martyr; just laid out the facts. You cried in your pillow at night.
I am honored that you include me in your circle and I don't know what I do to deserve it. I do know I need to reflect on how I can be more like you.
I've told my children, a good friend should be someone who makes you want to be a better person.
I can only aspire to be in a relationship like the one you had with Gregory. Because of your example, I am trying to be more patient with my family. I am trying to make more time, take more time to think about how I can help them. I am trying. Your influence improves my world.
You may not be a saint—but you may be a minor angel.
• • • • •
Next, one of Gregory and my most long time friends Jan wrote this searching, moving post about Gregory's passing. It is a must read about the sacred space Gregory created in his dying and the lessons and love he gave us in his last days and hours. Thank you Jan.