Tag: forgetting who I am

I don’t know if the story/parable below is true or not, but I think it could be. I’ve written it based on a comment someone shared in a caregivers’ group on Facebook. One thing is sure, the lesson it contains is powerful, practical and hopeful.

Harry, who lived with Alzheimer disease, was moved into a large nursing home somewhere in the world because his family couldn’t take care of him anymore. Every Saturday, a young woman would come to visit. She always brought delicious ice cream for Harry and her to share. Harry loved ice cream. He loved the feel of the cool creaminess in his mouth, and he enjoyed tasting the different flavours: raspberry, vanilla, chocolate, and maple, which was his favourite.

He and the young woman savoured their bowls of ice cream together, and chatted about things Harry didn’t remember after she left. But each week his face lit up like a Christmas tree when she walked into his room. He was glad to see her because he often felt lonely. Even though there seemed to be lots of people around, none of them sat and talked to Harry like the young woman who brought the ice cream did. No one seemed to pay much attention to him but her.

These Saturday visits went on for several months. Then, at the end of their visit on the last Saturday in July, Harry said something to the young woman that made her terribly sad.

“My daughter never comes to visit,” Harry said. His eyes got watery, his chin started to quiver, and his voice cracked. “I think she’s forgotten me. She mustn’t care if I live or die. I wish she would come to see me like you do.”

The young woman was devastated by Harry’s words. Her heart broke in two on the spot. She had to do something to help Harry feel better.

The next week, when she came to visit, bringing ice cream as usual, she also brought an envelope, which she surreptitiously placed on Harry’s bedside table when she came in. After they’d had their treat, the young woman drew Harry’s attention to the envelope.

“It looks like you got a letter Harry,” she said. “I wonder who it’s from?”

“I don’t know,” Harry said.

“Shall we take a look?” the young woman asked.

Harry nodded. The young woman fetched the envelope from the side table. “It says ‘Dad’ on the front.” She handed the envelope to Harry, who took if from her with a slight frown on his face. “Open it,” said the young woman. “Let’s see what it says.”

Harry pulled a handwritten note from the envelope and read it to himself. A smile spread across his face.

“What does it say?” asked the young woman.

“It says ‘Hi Dad, I dropped in to see you today, but you were out. You must have been at the barbershop with Joe and Charlie when I came by. But don’t worry, I’ll come again next week, and I’ll bring some ice cream to share. See you then, Love Katherine.’”

Harry was beaming. “Katherine’s my daughter,” he said to the young woman. “She came to see me today, but I must’ve been out. She says she’s coming back next week. She’s going to bring ice cream. She’s loved ice cream since she was a little girl.”

“Oh Harry, that’s great news,” said the young woman, “I’m sure your daughter loves you very much, and she’ll be here just as she promised.”

It went on like this every week for several months. Anytime Harry felt sad that his daughter never came to visit, the young woman would draw his attention to an envelope somewhere in the room. The notes were slightly different each time: perhaps Harry was in the bathroom, or the garden, or at the dentist, or wherever when Katherine had come by. But the promise was always the same: next week, his daughter would be back, and she would bring ice cream.

Meanwhile, the young woman and Harry enjoyed many Saturday afternoons together talking about his childhood, the weather, and the birds in the feeder by the window. Sometimes the young woman read to Harry. Sometimes he told her war stories. They joked and laughed about nothing. Then, one Saturday in December, Harry’s face lit up like a Christmas tree just as it always did when the young woman walked into the room. But this time, it was different.

“Katherine!” Harry exclaimed. “I’m so glad to see you.”

“Hi Dad,” the young woman said as she gave him a big hug. “I’m happy to see you too. I brought you some ice cream. Maple, your favourite.” They spent a wonderful afternoon laughing, listening to music, singing and just being together. Harry told Katherine about the young woman who sometimes came to visit, and who also brought ice cream.

“She’s very nice,” Harry said earnestly. “But not as nice as you Katherine. You’re my daughter. No one can take your place.” Katherine reached out for Harry’s hand, squeezed it gently, and looked into his eyes. “I love you, Dad,” she said.

“I love you too sweetie,” Harry replied. “Always remember that. No matter what.”

I visited with my mom virtually every day for the last four years of her life, and I was with her when she died. Sometimes she recognized me, sometime she didn’t. But it didn’t matter. What mattered was that we got to spend time together, and we created moments of joy almost every day. Just like Harry and Katherine.

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

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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.

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

http://handsoffmybrain.com/2018/10/are-you-my-mother

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Take my short survey on behaviour here.

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