Dementia Daughter

Billy Crystal is coming out with a new movie with Tiffany Haddish called “Here Today” about dementia stealing his memories away. I watched a trailer where he is sitting at this desk and the character played by Ms. Haddish looks at a corkboard covered in photos of people with names under the photos. She says “who are they?” He says solemnly , “my family.”

It struck me that I am incredibly lucky that Dad still remembers me. For some reason, he has forgotten a lot of people, but not his family. We are the lucky ones who have never had to endure being forgotten by a parent. I have met so many people who have told me their loved one no longer recognizes them and it’s agonizing. They wear the pain on their faces. How could their parent forget them they wonder. It’s beyond comprehension.

One family created a photo album for their loved one with photos of family members with their names under them. Others hung pictures on the walls and labeled the people in the photo. I even heard of one family that created name tags to wear that had their name, a phot of them when they were younger and their relationship on them like “Sue, your daughter.” One family went so far as to compile pictures of the family as young children and then a photo labeled with their name and age now in hopes that would spark a memory. These are all wonderful ways to help your loved one remember those who love them. What to do when these things aren’t enough or just don’t work?

Many experts say roll with it and I agree. If the person with dementia forgets you or thinks you are someone else, go with it. Create a moment of joy for your loved one. I had one woman tell me that she did just that. Her mother was talking to her and she realized that she thought she was her mother’s sister, not her daughter. Time and place didn’t matter that day and her mother thought it was the 1950’s and her sister had come for a visit (they did share similar features.) She went with it and had a delightful visit with her mom. She did not make her mom feel embarrassed or confused by telling her that she was not her aunt and it was 2017 and she was her daughter. She had a joyful encounter with her mom. She told me she felt bad pretending to be her aunt who had passed away three years before. I told her that she had created a safe place for her mother to just be herself and not be corrected or embarrassed. It’s another perspective to consider. Maybe next time her mother would recognize her and I gave her some tips like the photo books and nametags to try. I said she felt better after we talked, but I knew it was not going to be easy as her mom went in and out of recognizing her.

Creating moments of joy and feelings of love and safety are gifts we can give our parents with dementia. Arguing, correcting, asking “don’t you remember?” only make them feel insecure, confused and sad. Cherish the days they remember you and when they don’t, just cherish the time together. Love is something that can be felt and giving them your love no matter who they might think you are that day is a comforting and uplifting gift. Trust me, it is harder on them to have dementia than it is on you to just play along. Enjoy the moments and ride the waves of recognition. It’s not about you.