Mom first began not recognizing me in summer 2010. Sometimes, when I came back to the house after a run or a trip to town, she would greet me like I was a visitor rather than her daughter. I saw the uncertainty on her face and in her eyes: she knew she knew me, but she couldn’t quite put her finger on how or why. I was familiar, but our relationship was a mystery.
“Who is she?” she must have asked herself. “She knows me, so I must know her, but I don’t. Who is she? Think. Think. Think!” Five years later I would develop a list of 20 questions to ask when a loved one doesn’t recognize you anymore; and in spring 2017 I composed an alzheimer parent’s poem.
One afternoon shortly after my return in 2011, Caroline (an earthbound care angel) and Mom were going to town to do some shopping. As they walked down the path toward the driveway and the car, Mom turned to Caroline and asked:
“Who’s that girl in the house Caroline?”
Caroline answered in an even tone without skipping a beat: “That’s Susan. She’s your daughter.”
“Oh,” Mom said. The two of them continued down the path as if such a question and answer were as normal as blue skies and green grass, and I stood at the door happy and secure in the knowledge Mom was in good hands, loving hands.
Whenever Mom didn’t recognize me in the early days of the disease she hid it well, just as she had other symptoms for longer than anyone knew. But she didn’t hide any of it well enough for me not to notice. I saw the subtle changes, the cover-ups and the coping strategies.
It must have frightened her to have someone whom she didn’t know breeze into her home like they belonged there. She must have been worried too by the other cognitive losses she was experiencing. But she didn’t let fear get the best of her. Not ever. Not even when she breathed her last breath. Her bravery and determination still astound me, even though she’s gone.
When Mom was still alive, “Does she still recognize you?” was usually the first question people asked when I told them my mother had Alzheimer disease. Millions believe that individuals with dementia cross some kind invisible line, fall down some crevasse into oblivion or simply cease to exist when they can no longer identify those closest to them. I was one of those millions. I thought when my mother didn’t know who I was that she–or at least the person I knew as her–would be “gone.” If she didn’t remember me I reasoned, it wouldn’t matter if I were there or not. Somehow she wouldn’t be Mom anymore, I concluded.
I was wrong. I now understand that self eclipses a well-functioning brain and a healthy body. There is so much more to our selves than muscle and memory. It’s possible to play hide and seek with the hints, whispers and fleeting bits of spirit, grace and knowing beyond Alzheimer’s skin and bones. With practice, care partners can tap into levels of patience, playfulness and wonder in themselves that they might never have dreamed possible. We can all learn to look and listen slowly and carefully, and to communicate with people who live with dementia at their pace, in their space. Rushing or wanting a different reality is a waste of time and energy.
Perhaps others thought my answer to their question about whether Mom recognized me or not would help them gauge the level of my suffering and the measure of pity or compassion they should have offered in response. I appreciated their good intentions. But, while having their loved ones recognize them matters a great deal to many caregivers, it wasn’t important to me.
I was lucky. I was able to let go of that part of my ego, and thus save myself a lot of grief over the decline in Mom’s capacity to remember, think, and do. Being doesn’t require remembering, thinking or doing; and recognizing love and compassion doesn’t require recognizing individuals. It helped that I saw Mom as an engaging, vibrant and fully human being rather than a lesser version of herself or worse, an empty shell. I saw possibility and potential in her right up until the moment she died and beyond.
I’m one hundred percent convinced that Mom felt how I saw her, and the fact that I saw her as “more” rather than “less than” helped her to live her best life until the end. Mom may not have always known who I was, though she often called me by name even late in the disease, but I always knew her. And I know myself. It was, and still is, enough.
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