Care Partnering, Family, Memories, Videos

will the real me please stand up?


the-real-me-copy

November 30, 2011: “You’re not my daughter Sue!” Mom is exasperated. “My daughter is a young person, you’re an older person. You could be my sister, but you’re certainly not my daughter.”

It’s early evening, several weeks after I arrived back to live with and care for Mom in her own home. We’re sitting in the den by the fire discussing who I am. The conversation has been going on for a good forty-five minutes. Mom has just finished telling me her name is Patty Macaulay and she’s married to Don Macaulay.

“Do you have a birth certificate Sue? You should have a birth certificate you know.” She’s trying to be helpful.

“I do,” I reply.

“What does it say?”

“It says Mary Patricia Eustace Macaulay and Donald Robert Macaulay are my parents.” I don’t yet understand that I should just go with the flow and not contradict her.

“I find that strange Sue,” she says, incredulous. “I have two children and you’re not one of them. And I don’t think my parents were your parents. I don’t think you were in my family.” The whole thing is terribly mixed up, and Mom can’t believe her ears as I assert that yes indeed, I am her daughter.

I will learn down the line that trying to use logic is a complete waste of time. Worse, it’s counterproductive. It only causes Mom to become more anxious, more “combative” and more confused. But I haven’t experienced enough of the disease or the way it manifests in Mom to know the futility of common sense on this early winter night in 2011. At this point, I’m still a novice. And I’m too busy being fascinated by what she says to be hurt by it. I grab a 2007 picture of myself from the mantelpiece and hand it to her. It takes her less than a second to know it’s me. But not the me in the room with her.

“That’s her,” she says, as she looks at the picture. “She’s got sorta white hair. She’s got hair a little bit the same as yours. She’s whiter than you though. She’s got blue eyes.” She looks at the picture more closely. “Yeah, they’re blue eyes. She’s got a big smile. That’s her, that’s my daughter,” she says with complete assurance. She recognizes the me in the picture, but she doesn’t recognize the me standing two feet away.

“She’s gorgeous I have to say,” I laugh at my own joke. Finding humour is critical to staying sane. I will learn that too, down the line.

“She is a nice looking girl,” Mom agrees, serious. Later on, when we’re both tucked in, she calls across the hall from her bedroom to mine:

“’Night Punkie,” she says, like my nickname is one she will always know, “sleep tight.”

“You too Mom,” I call back. “See you in the morning.”

“Yeah. See you in the morning Punk.” Then she turns off her light, having completely forgotten about forgetting about me. At least today.

If you are upset because a person you love who lives with dementia doesn’t recognize you anymore, you might find these 20 questions helpful,  and you may want to have a look at this link too.

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8 thoughts on “will the real me please stand up?”

  1. I remember when visiting my grandfather he confused me for one of his sisters. I had prepared myself for my mother forgetting who I was and when it happened I wasn’t nearly as upset as I had been the year before when she forgot my birthday, before I realized that is is/was never personal. When my mother forgot who I was both of my kids (24 & 19 at the time) were with me. They were both shaken to their core. Their reactions were very different. My son, an emotional mess had to leave and my daughter convinced herself that my mother was joking. It wasn’t easy for them, but aging isn’t always graceful and Alzheimer’s is a reality. Sorry you were alone when it happened to you.

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    1. Heidi! I’ve missed you ❤ It's so good to hear from you again. I remember you telling that story before and I'm so glad you've recounted it again. Everyone reacts in different ways when it happens. Interestingly, I believe Mom's ability to "recognize" me came and went as the disease evolved and I believe may actually have "improved" in a sense as the disease progressed. She always recognized me as someone she loved and as someone who loved her whether or not she knew who I was, even as I held her hand when she was dying.

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  2. Susan,
    i always enjoy reading your stories and watching your videos. I learned very early to go with what ever Deb was saying. I guess that reality i accepted when we got the diagnosis. It still stung as the memory symptoms got to that stage and progresses.

    Even tonight after watching and reading your story, i asked, “is Wilbur your husband?” She says “yes”. I ask, ” do you love him?” She says, “yes”. I ask, “am i Wilbur?” She says “yes” then starts her pacing and says daddy and holding a conversation that doesn’t include me. But for those few seconds i did feel she was talking to me. 🙂

    Tomorrow we will start our journey again 🙂

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