Good Times with Mom

If you want to be happy, be.

~Leo Tolstoy

My personal experience with Alzheimer’s was my journey with my beloved mother, Eula Stanislaus. My mother was diagnosed with Alzheimer’s disease in 2006. I had noticed some little changes in her prior to 2006, but because I didn’t understand the early signs of the disease it went unnoticed.

I remember in 2003 Mom and I were walking in New York City, and we had just passed a bakery. Mom turned to me and said she didn’t smell anything.

I looked at her and said, “Mom, you really can’t smell that?”

“No, I really can’t.”

I accepted this and chalked it up to her getting older. She was seventy-two. Now I know that one of the signs of early-stage Alzheimer’s might be as simple as not being able to smell peanut butter.

Then her hands began shaking uncontrollably and sometimes she could not get her legs to move when she wanted to get up and walk. It was as if she would send a signal from her brain to her legs but her legs wouldn’t receive it. If only I had had more awareness and education about the disease, I could have helped her manage the symptoms in these very early stages.

As a caregiver, meeting the challenges of this everyday fight, with what I now realize was Alzheimer’s, was devastating. I had not been aware of the challenges I would be up against and the continual devolution in my mother’s ability to do anything for herself.

Mom sometimes didn’t want to take her medicine; she didn’t express hungriness; she was in a constant state of forgetfulness, and sometimes she would imagine little babies sitting in her living room, or she would call out for people who had been dead for more than forty years. I learned with this disease to expect the unexpected, to be prepared to go with the flow and to react calmly to whatever she was going through in that particular moment.

This was obviously a great deal for me to handle. It was emotional to watch my mom — my best friend — changing from an adult to someone more childlike. To watch her change into someone who I had to console through my tears by saying, “As long as I am caring for you, everything will be all right.”

My mother’s symptoms were such that I could still take her everywhere I went. I never left her behind. But for me, managing stress became harder as the disease progressed. My mom needed me more and more every day and the result was that I looked after myself less and less. I made this choice because I felt no one would or could take care of my mother as well as I could. It was the best choice I ever made, and without hesitation, I would make that same choice again.

On the brighter side, there were so many funny moments. My husband, two daughters, and I understood how to handle certain situations that cropped up again and again. If Mom saw those small babies in the living room, we would say, “Okay Mom, point out where they are so we don’t sit on them.” Then we would all laugh, including Mom.

Sometimes we would leave the room and when we came back, she would look at us as if it was the first time she had seen us all day. We would give her a big hug and announce we were home and so happy to see her. Mom would give us the biggest smile. No matter how many times we had to repeat the process she remained happy, a big smile plastered on her face.

Overall, my mom had a peaceful and loving experience as she fought this disease. As a family, we made it fun for her. I would dress her up in bright outfits and comb her beautiful hair, which was down to her waist. I would have her nails done. Her make-up would be impeccable and she loved to wear her red lipstick. She dressed sharp every day and it made her feel good about herself. We took her out to dinner to beautiful places, as she always appreciated beauty. I always said because she was such a beautiful spirit, every day was a beautiful day for her.

~Bern Nadette Stanis

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