Alzheimer’s Awareness Month

I awoke this morning with an idea.

I have this powerful photograph I took of my daughter Ella sitting on the lap of Bubbe Pat (z”l) during one of our visits several years back. It is charming because of the smile on Ella’s joyful face, yet haunting because of the vacant look on my mother’s face.

I have always thought that the picture captured the spirit of our visits with my mom – Ella is clearly so happy and while my mom is physically there she appears absent. And I’ve always thought this picture would make a good poster for Alzheimer’s awareness. And that was the idea I awoke with – why don’t I just make a poster with the picture? So that’s what I have done.

While a picture may be worth a thousand words, I feel a need to elaborate.

My mother’s descent into dementia in her later 50s was one of my life’s great disappointments. Mostly, this is because I know she would have adored them and loved spending time with her grandchildren. Since I adore them and love spending time with them, I made a habit of visiting her regularly and taking one or both of them along.

My inspiration for these trips came from many places, but a film I saw in 1995, a few years before my mother’s dementia had manifested itself as such, really had an impact on me. There is a short excerpt on YouTube if you care to see it.

In Complaints of a Dutiful Daughter, filmmaker Deborah Hoffman describes how she came to realize that the key to having a relationship with her mother was to abandon her old relationship and start a new one. Her mother was suffering from memory loss, though physically very healthy, and had just forgotten who her daughter was. The daughter would get so frustrated about that and try to remind her mother who she was. This went on at each visit. Finally, the daughter realized that in order to have a relationship NOW with her mother, it didn’t matter whether she remembered who she was or not. It was also in this film that I learned about studies showing that the heart rate of some Alzheimer’s sufferers actually increased in the presence of family and loved ones, even though there was no other detectable sign of recognition on their part.

These things stuck with me and when faced with the reality that my mother would not be able to interact with my kids, I changed my expectations. What I realized was that my kids could have a relationship with their grandmother, even though she could not talk or acknowledge them in any way. I started by making the trips fun. We’d stop at McDonald’s and eat. They would watch videos in the van – it was, after all, a two-hour drive each way. I’d let them eat any candy or treats they wanted at snack bar. For my mom’s birthday, we would take her out for a picnic somewhere. After she lost mobility, we would bring the picnic to her.

The kids enjoyed these visits so much that they would say they missed Bubbe Pat if we hadn’t gone to visit in several weeks. Frankly, this never ceased to amaze me. How could a 3 or 4 or 5 year-old form an emotional connection with a woman who didn’t walk, didn’t talk and had her eyes closed most of the time that we were visiting?

Of course, they saw my love and dedication to her. But their emotional connections came from the totality of the experiences they shared with her – even though one of those experiences was not talking.

And, in my heart of hearts, I know that she was aware of our presence on some level and appreciated it. How could she not? They were happy, smiling, lovely kids whose smile would light up a room. Being with her, holding her hand, this was only for the better.

Maybe you have a parent who suffers from dementia or have a friend with a parent in this situation. Maybe you have a friend suffering from Alzheimer’s Disease who doesn’t see their grandchildren enough because of it. Pass this note on.