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Nancy Wurtzel Headshot

Dementia: When the Book and Its Cover Don't Match

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Looks can be deceiving. Mary, a slight, sweet woman, moved into my mother's independent living home about six months ago. My mom can't remember her name and instead calls her "the little young gal."

Mary's actually 83, which makes her no spring chicken. However, she might indeed be considered young by many of the residents, including someone like my mother who will turn 92 later this year.

Mary is extremely active, making a twice-daily trek around the golf course, be it rain or shine. I'd say Mary is also one of the more cheerful residents, never complaining about her lot in life and always happy to make upbeat small talk. She dresses fashionably and keeps busy quilting. From what I could see, Mary seemed like the picture of physical and mental health.

However, outward appearances are not always what they seem at first blush.

I recently had the chance to speak to Mary's daughter, Karen, and I casually mentioned how much I enjoyed getting to know her mother. I told Karen she is lucky to have a parent who still has all of her cognitive abilities.

Arching an eyebrow, Karen shook her head slowly and told me: "Sadly, my mom is in the first stages of what is probably Alzheimer's and the disease seems to be advancing very quickly."

I was speechless -- and those who know me will tell you that this does not happen often.

All I could say was something to the effect that I was very, very sorry to hear this and that it must be so difficult for their entire family. Then, I reminded her that my mother also had dementia -- probably Alzheimer's disease as well -- and that I certainly would be happy to listen should she want to talk.

The floodgates opened.

Karen said that her mother had lived on the family farm for 50 years, the last 26 years as a widow, living alone and being very self-sufficient. About a year ago, family members began noticing some rather odd behavior. Mary would call her sister to talk, and have a long conversations. Later that day, she would call the sister again, saying, "I'm calling to catch up as we haven't talked in ages." She had no memory of having spoken at length to her sister just hours before.

Mary also began hoarding many items, including newspapers, aluminum foil and plastic containers. When they finally convinced Mary to move from the family farmhouse, they found thousands of plastic containers hidden away in cupboards and closets as well as under every bed and even in the trunk of her car.

Yes, Mary was still driving, but the family knew she should not be -- Karen said her mother's car keys were going to be taken away shortly. I encouraged Karen to take the keys and tell Mary the car was broken. However, I know from my own experience this is always easy advice to give, but never easy to enforce when it is your own parent.

After listening to Karen talk for about 15 minutes, it struck me how I had missed all of the signs. While I'd talked to Mary dozens and dozens of times, I'd not picked up on the fact that she had significant memory loss.

It was probably because Mary looks so robust and she can still talk a good game -- carrying on a lively, coherent conversation. She is "in the moment" and enjoying herself.

My mother has been affected differently by dementia. Once a great conversationalist, she is really not able to make small talk and hasn't been able to do so for a long time. My father had Alzheimer's disease and his personality and memory were affected in very different ways as well. He often focused on one subject, asking the same questions over and over and over.

My mistake in thinking Mary was fine is actually a very good reminder that not every book can be judged by its cover. Sometimes the book jacket can look amazing, but when you open it to look deeper, you see the content and the cover don't fully match. In dementia, each person is unique and their path through dementia will be unique as well.