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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Challenges & Solutions, Life & Living, Love, Videos

what confusion felt like to my mom in the later stage alzheimer

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October 23, 2014: Today I had reason to revisit a video I’d made in which Mom talks about how she feels about her state of mind I don’t have words for the way in which I’m inspired by her courage and determination, particularly in view of the daily challenges she faces. She is one amazing woman walking one daunting path home one step at a time. I’m in awe of her courage every single day, and grateful for the time we spend together. The clip below is also part of a longer conversation we had on August 19, 2014, which included how to keep the faith when you are going through a rust patch.

Living with dementia is a roller coaster, just like the rest of life. Mom and I have many moments of joy and happiness to balance these more difficult ones. Here are three examples to lift your spirit and put a smile on your face:

  1. tiptoe through the tulips
  2. ain’t she sweet
  3. mcnamara’s band

To better understand what it feels like to live with dementia of the Alzheimer’s type in a long-term care facility, see this series of stories told in the voice of Alzheimer’s Annie.

Mom died on August 17, 2016.

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Take my short survey on behaviour here.

https://myalzheimersstory.com/2015/08/30/we-all-go-through-rough-patches-heres-one-thing-that-helps-us-get-to-the-other-side/

https://myalzheimersstory.com/2017/01/08/alzheimer-annie-invites-you-in/