This time, it was my younger self who contacted me and asked me to meet up with her for coffee. She was nursing her usual hazelnut flavored coffee with skim milk and sweetener, looking anxious, as I entered the shop. I joined her at the table with my black coffee, warming my palms on the ceramic mug.
“How did you get a ceramic mug?” she asked, looking disdainfully at her paper cup with a plastic lid.
“Oh, we learn to ask for what we want. You’ll get there,” I replied. “I was expecting you to ask for this meeting. The request needed to come from you, when you were ready to ask for help. It didn’t take you as long as I thought it might.”
She looked down at her cup of coffee and whispered, “Yes, I need your help. I don’t want you to tell me exactly what happens, but I’d like for you to tell me how I survive what’s coming.”
I really wanted to go to her side and fold her within my arms, shielding her from the pain, but I kept my seat, knowing that we would have to experience all that was coming, head on. There would be no shielding, so instead, I replied in a steady voice, “We do survive his diagnosis, and I will tell you how, and we will use what I tell you as we move forward.”
She looked up at me with tears in her eyes and said, “I know that I will survive it, and that he won’t, but I don’t want to walk this path. And I really don’t want him to have to walk his path. It’s all too sad.”
“I know. It doesn’t seem fair that someone as young and healthy and smart as he is would have to endure a diagnosis like Alzheimer’s disease. It IS sad. Sad for him, for you, for the daughters. It’s OK to acknowledge that, and even to show your sadness.”
The tears in her eyes turned hot and angry as she declared, “No, it’s NOT fair. He did everything right—all those marathons, healthy eating and sleeping habits, and keeping his brain active—none of that protected him.” I met her gaze and held it as she continued, “And I know this sounds selfish, but it’s not fair that everything in my life will change, and that I will have to be in charge of everything as he declines.”
“But we do it. We manage it all,” I replied calmly.
Sarcastically, she said, “Oh, I’m sure we do,” then said, “I just don’t WANT to do it all.”
Her anger wasn’t dissipating. It wouldn’t for a long time, flaring irregularly over the next eight years, but I didn’t tell her that. Instead, I said, “Let me tell you how we learn to cope with it all. First off, we learn to ask for help. Actually, we learn to accept help when it’s offered.”
“But it’s my responsibility, as his wife. You know, ’In sickness and in health’. I can’t ask for help.”
I was expecting this reply, so I said again, “We learn to accept help. By telling folks what we and he are experiencing, our community comes to us with ways to relieve some of our burdens. And you won’t believe the number of people who offer to help—in creative and profound ways.”
Her tears had dried, and she looked at me with mild shock and said, “Really? That’s amazing. Without me even having to ask?”
“Yes! We learn that there is power in vulnerability. And even more power and strength in community.” I took a breath and continued, “But there’s more that I want to tell you. You may think that you are strong and that your strength will carry you through, and that’s true. We ARE strong—born that way, and raised that way. But it’s the power of our love for him that provides us with most of our strength.”
She replied, “I do love him. So very much. That’s why it hurts so badly to imagine what he will go through.”
“And it’s the love that we and he have for each other that carries us all through,” I said.
“I can believe that,” she responded.
“And something else, our life continues after this passage. And it continues in amazing ways. I know it’s hard for you right now to imagine a life after, but what we learn during these coming eight years will ripple out and transform how others approach a similar path. Our experience, and how we translate that experience into words, both written and spoken, will inform and guide other dementia caregivers.”
She looked at me with confusion and asked, “I am writing in my journal about this experience, but are you saying that others will read my journals?”
I chuckled and responded, “No, no. We write a memoir about our experience, using those six journals that we end up filling. And we speak to groups of caregivers. Our words make a difference.”
“Really? That’s amazing. But will my life always be filled with Alzheimer’s disease? Does it become my life’s mission? Right now, hearing that, it makes me feel proud, but a little sad, too.”
“Well, it is our mission for a time, but that time gradually merges into a life of travel, adventure, hiking, dancing, creative writing, and family.”
“Really?” She exclaimed again as her eyes grew wide. “What else is on the other side?”
My face split into a grin, and I responded, “Well, we will just have to meet up again in another fifteen years for us to continue this conversation.”