To The Children of Dementia
I took my one year old daughter Brooklyn with me to a memory care unit today for what I call “baby therapy.” The residents were delighted to watch Brooklyn play with the assortment of balls on the floor, and she was delighted with the attention. As we took turns tossing balls around the room to each other, I watched a scene unfold which stamped my heart and mind.
There is nothing significant about the situation at first. A couple of women enter the unit, one looks to be in her 30s, and another woman in her elder years, maybe the younger woman’s mother. They watch the group of residents playing the game, eyes scanning the crowd. I assume they are a resident’s family members. They keep their distance for a while, and I study the younger woman’s face to determine which of the residents she belongs to. I can’t tell. They don’t approach anyone, and I think it’s probably because they don’t want to interrupt the game. The mother and daughter walk down the hall without saying hello to whomever it was they came to see. They come back. Finally letting her father see her, he immediately lights up and smiles at the younger woman. Now I can see. She has his nose. She waves and smiles back at him. Eventually she gets close enough to whisper something in his ear, and he reaches up to hold her hand against his cheek. His wife fiddles with something around his ear. He appears to be holding onto his daughter’s hand for comfort during this procedure but doesn’t let go when his wife is finished.
All of a sudden I notice the daughter is crying, her curly hair covering her face as she ducks her head behind her father’s so he can’t see. Suddenly I feel very intrusive. And very intrigued. She sobs and he keeps holding her hand against his face. The mother replaces the daughter’s hand and whispers something to her, maybe words of comfort. Without saying goodbye, the daughter leaves with her mother.
I am changed. With no words at all and perhaps unwelcome visual eavesdropping, I have been reminded of something very important. When I worked at this very facility I took notice of which residents got visits and which didn’t. I was angry at the families sometimes, especially those who I know lived close enough to visit regularly. Didn’t they care about their family members?
People ask me isn’t it hard to work in a place like that and see people suffering. Surprisingly, it was most of the time not painful at all. My job as a recreation therapist was to help bring them joy each day, and I saw them as my dear friends. My dear, old, memory-impaired friends. That is all they have been to me. He is not my father. She is not my mother. That is not my husband or my wife.
When someone you love is changed because of a health diagnosis, dementia or otherwise, you know what they have lost because you know them. You mourn more than anyone else, perhaps even more than the person himself, because you know and are aware of their losses. You know that your father used to be able to play guitar and swing dance and name all the presidents. You know that your mother used to run six miles a day and play bridge with her girlfriends and give you the advice you so desperately need. You must mourn for these losses.
I am not writing this to say I know how you feel. I don’t. I love your father too, but not the way you do, and so I haven’t lost him the way you have. I am writing this to say I am sorry for your pain, and I am in awe at your strength. I am in awe at your strength because I wonder if sometimes the easier thing to do would be to stay away and keep your distance so that you don’t have to face the pain of what you have lost. But you keep coming. Bless you for that because your parent needs you, even just your touch, just as a newborn needs a parent’s touch for their very survival.
I am also writing this to encourage you to keep trying to reach them. Because you know them, you know what will connect with them. You know what might bring them out of the fog. You know that your dad loved to garden, so you bring a tomato freshly plucked from your own backyard so he can feel it in his hands. Maybe it will get him talking. Maybe he will smile. Maybe he will cut it up and eat it with a sprinkle of salt. Maybe he will have no reaction at all. But you keep coming. You keep trying.
Thank you so much for that.