Wednesday, 20 February 2019

Care Partner Wednesday--What's In A Name?





I wandered from room to room this morning, looking for an unused over-the-bed table for a resident moving in next week. In one of the rooms, I stopped, sat on the bed and let the experience wash over me. On the bureau sat a vase of grocery store flowers. Nothing spectacular about that. Propped against it sat a hand-made sign. A plain wooden frame with paper glued on the front. The sign read, "Doug loves Mom."

Doug, probably in his 60s, doesn't look the least bit crafty. His mom suffers from late-stage Alzheimer's and profound aphasia. Her garbled speech makes no sense, she doesn't walk well, and she probably couldn't tell you her son's name.  Yet he reached beyond comfort to remind her every day of his love.

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The Facebook post made me cringe and wish I could talk with the person who wrote it. "Alzheimer's is such a terrible disease. A bunch of us went out for lunch with Mom. She looked right at me and said, 'Is Nancy coming?' I'm Nancy." I hear this person's pain as she contemplates her dear mother not recognizing her. This moment, the moment when recognition fails is one so many dread. My own mother had Alzheimer's, and although she died in an accident before she forgot my name, I remember her pain at not knowing the names of her beloved flowers. It hurts. However--

Get over it. These words sound harsh, and I rush to explain. Not everyone with dementia forgets names. But they might. Of those who forget names, many remember the relationship, although they probably can't name it. Doug's mother couldn't tell you the person who eats lunch with her weekly is her son, but her face lights up when she sees him. She knows. Nancy's mother is looking for her and doesn't recognize her. It hurts, but get beyond it. Your mother sits beside you and needs reassurance. Try this response, while giving a huge hug: "Yes, mom, Nancy is sitting right here, and she loves you so much."

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One of our residents suffers from profound dementia but occasionally has what can only be described as amnesia as well. Everything familiar--her environment, her care partners, everything she knows drops away leaving her frightened and feeling alone. "I don't know anyone." Her advocate reassures her by saying, "You don't know anyone, but we know you really well. You can feel safe here." She relaxes until familiarity returns.

This whole forgetting thing--it might happen. Your loved one might forget your name, your relationship or what you mean to them. Whatever pain this evokes, realize this: it doesn't define your relationship. Don't make it bigger than it needs to be. Alzheimer's doesn't have the power to cancel love.

A precious video on Facebook shows a mother and her daughter lying on a bed. From their conversation, you can tell the mother has dementia and sometimes doesn't know her daughter. Mom says, "Well, I love you." The daughter replies, "Do you know who I am?" Softly, Mom says, "Kelly." Surprise and delight spring to the daughter's face. At the end of the clip, she says, "What are you thinking right now?" Mom says, "I'm loving you."

I'll say it again. Alzheimer's doesn't have the power to cancel love. It can take away names and memories but never love.

Doug loves Mom.

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Care Partner Wednesday--What's in a Name?




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