Defending a loved one’s dignity in the battle against Alzheimer’s

Some tips for Alzheimer's caregivers when the disease causes unusual behavior

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by Ray Burow |

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People in the late stages of Alzheimer’s disease can exhibit unusual behavior, although altered behaviors can occur in the early stages, too. Caregivers might notice slight changes in personality that go unnoticed by someone less familiar with a person who has the disease.

Cognitive impairment dampens thinking skills, and simple decisions become difficult. A wrong decision might make sense to a person with dementia. Those odd choices can lead to some embarrassing situations. While familial caregivers understand that their loved ones don’t behave oddly on purpose, caregivers are also concerned with maintaining their loved ones’ dignity.

Expect the unexpected

When a loved one is diagnosed with dementia, family members likely don’t know what to expect. But as time passes, they learn to expect the unexpected.

I found myself on pins and needles when I was out and about with my late mother, who had Alzheimer’s. She was a wonderful person before and during the course of the disease, but because of her cognitive loss, her behavior was uncharacteristic and sometimes bizarre. In her right and healthy mind, she would be appalled by the faux pas that challenged her dignity.

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Protecting dignity

As her familial caregivers, we were responsible for protecting our mother’s dignity. We didn’t scold her but rather gently directed her to the appropriate behavior for the situation. At times, finding humor was the best option. My mother experienced quite a bit of loss with dementia, but one thing she never lost was her sense of humor. That came in handy.

Laughter is the best medicine

My mother was observant, but what she observed could prompt an inappropriate action. For instance, a lady with many freckles sat beside her at a basketball game. My mother was mesmerized. I gently redirected her hand from petting the lady’s arm like she was a cat.

I was praying that this person wouldn’t notice my mother’s obsession with her freckles, but she did. She said, “It’s OK,” and moved her arm within reach. Mom touched her arm and said, “Your freckles are so pretty.”

“Thank you,” the lady responded, and they went on chatting for a short bit.

It is inappropriate under normal circumstances to invade someone’s personal space, and to touch them is unthinkable. However, the interaction taught me to let up a little and try to relax. Kind and intuitive people, like this lady, would make allowances for an oddity here and there.

At another ballgame, a woman sat behind us and placed her beautifully styled toes on the bleachers beside my mother. Again, I was on pins and needles and began whispering frantically. “Mom, don’t touch her feet. Please don’t touch her feet.” My fear abated when my mother, tickled by herself and with me, giggled and refrained.

Proper perception is essential

Caregivers need friends and family members who can help us avoid taking ourselves and our circumstances so seriously. I had this type of encounter when sharing the toe story with an acquaintance long ago. She threw back her head and guffawed.

“I would have dared your mom to touch her feet,” she said. “You should have said, ‘Hey, Mom, I’ll give you 10 bucks if you touch her toes.'”

My perception was altered. It wasn’t that big of a deal. My mother wouldn’t touch a stranger’s feet or marvel aloud at a freckled arm if not for dementia. She had the most common form of dementia, so what would it matter in the grand scheme of things?

There were more important issues to address and, at times, more significant challenges to her dignity than freckles and toes. Perception and a sense of humor help to discern them.

Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.


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