Thursday, November 14, 2013

The Sweetest Woman With Altzheimer's

This is my Aunt Winnie:

My aunt, watching my daughter bounce around.  She is not amused.
She's a remarkable woman who was born in 1921 in the small town of Keyapaha, South Dakota and moved to New York City when she was in her 20s to pursue her dream of becoming a hairdresser. She met and married my uncle Al when she was in her late 20s and the two of them had a wonderful life.. When he lost part of his leg due to diabetes, she didn't whimper and complain about being his sole caretaker. She did what she had to do – took care of him. When he died a few years ago, I was afraid she would wither away without him, but she didn't. Even as she turned 90, Aunt Winnie plugged away, taking her shopping cart out periodically for the city-block walk to the nearby grocery store. Every time I called and asked how she was, she'd say, “Pretty good, for an old bird.” Visiting her was always a pleasure because she was sweet, gracious, and the best damn cook I ever met in my life! She never asked for anything, even as she slowed down to a snail's pace, because she was a giver rather than a taker.

She still is. A fall destined her to live in a nursing home and soon after, it became crystal clear that she has Alzheimer's. Sure, she had always been forgetful, but the nurses at the home discovered sores that attested to the fact that she had been neglecting herself for a very long time. In addition, the nurses told me about “spells” she had been having, episodes of aggression. I could fathom it – Aunt Winnie was the most genteel woman I'd ever met. I visited her in the hospital where she had been sent to fight a bladder infection and when I mentioned that I'd heard she had hurt one of the hospital staff, she stared at me in disbelief and said, “I never in my life did such a thing. Why would they say that?” But reports from both nursing staff correlated. Over the last two years, I've heard more and more reports of that behavior with random residents of the nursing home asking me, “Are you her relative? Do you know what she's like?!”

Yes, I know. She's an intelligent woman, sweet and with a heart made of gold, who has lived a very long life. Altzheimer's has changed her.

When I started this piece, I thought that Winnie has dementia. But that would be inaccurate because dementia is not a specific disease; rather, it's a term that describes a series of symptoms which can include memory loss, trouble recognizing people, difficulty controlling moods or behaviors, and not keeping up personal care such as bathing. When my aunt is violent, she's exhibiting Alzheimer's aggression which indicates she's in the later stages of Alzheimer’s disease. According to, “the person may become easily agitated, angry, and abusive -- often for no apparent reason. The person may curse, hurl insults, and scream. Though verbal assaults are more common than physical assaults, a person with Alzheimer’s disease may throw things or resist care by pushing and hitting.” No one knows for sure why these patients become aggressive, especially since it can come on without warning, but the nursing home staff quickly determined that my aunt cannot be alone for very long without these “spells” coming on.

A few factors can bring on aggression. And I've noticed that at certain times, if she doesn't get what she wants when she wants it, her frustration leads her to become belligerent, much like a toddler. Then she grunts, a signal that she's getting frustrated and bad things are about to happen. Gradually, she gets more and more agitated. Fortunately, the staff at her nursing home have learned how to calm her down and I've never seen a full-fledged aggressive attack. I know, too, that change throws her for a loop. The nurses told me that recently, when the home's Maintenance Department needed to keep her out of her room for a day while they waxed her floors, she went berserk, cursing, punching, screaming. Such is the way of Alzheimer's.

Yes, she's on medications to help control the aggression, but they don't always help. And who wants to be medicated all the time? The nursing home tries different behavioral strategies to help and her trained aides have been wonderful. On my part, shortly after she entered the nursing home, I made her a collage of some of her family and friends; I understand that collage has been great in helping with her memory since she can remember 70 years ago better than whether she had breakfast this morning. It's also served as a distraction when the staff needs to calm her down.

Visiting her, as I do on a regular basis, comforts the both of us. She may not know specifically who I am, but she knows I belong to her, that her care is being watched. By talking to the home's staff and her aides, I've come to understand some coping strategies that they use to reassure her, and that's made my visits a bit easier. I am vigilant, however, when I bring my kids. They're aware of the illness that afflicts my aunt but it's unpredictability keeps them on edge. When I see her starting to get agitated, I gently, but firmly escort them out of the room. Still, they know that visiting her is crucial, that it means a lot to me, and so they go.

Winnie is still an amazing woman. When she lunches in the dining room, she never fails to ask if I would like something from her plate. She delights in the photos and stories of my children. She animatedly tells tales of growing up in South Dakota in the 1920's and 1930's. My aunt's eyes light up when she talks about her mother, sisters, and brother, long departed, whom she still misses. She understands that she has lived a long life and still takes each day as it comes. And when I ask how she is, she still says, “Not bad for an old bird.”

The best Web resource I've found for understanding Altzheimer's, the progression of the disease, and the often baffling behaviors that accompany it, and a great group for support , is the Altzheimer's Association site at It's a very interactive site that offers a wealth of information with links to local chapter of the group, links to professionals and clinical studies, a 24/7 helpline
(1/800-272-3900) and more.

If you suspect that a friend or family member might be suffering from this heartbreaking disease, please visit this site.

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