I know I’m not alone. There are many of you out there living the same situation: my mother has dementia. She is 94 and lives in the skilled nursing section of a Senior Living establishment. It’s beautiful and there are times when she can articulate that she likes the single room that my brothers and I have decorated with family photos, her special chair, books, TV and personal mementos that are part of who she is.
But her multi-infarct dementia is getting worse. Though she knows us, her three children, she can rarely remember anything that has happened within the last ten minutes. She can no longer store information. So after I had driven five hours to visit her, hung new pictures in her room, shared letters and photos of my grandchildren, taken her around the premises to visit old friends—it was like I had vaporized. I was never there. And the result of all of this, as I see it, feel it, is that I am an uncaring daughter who doesn’t bother to go see her, to hold her hand, to kiss her forehead, to pray with her at meals. I am ungrateful and distant.
Maybe somewhere deep in her heart she feels that this is not so. But how am I to respond when after five days of attention to her needs, she asks me on the phone, when am I coming to visit. It’s even worse for my brothers. I can drive to Chicago. They have to fly. Somehow my younger brother can laugh about the many times he is just coming in the door from a long flight back to LA and the phone is ringing. It’s Mom. “When are you coming to visit?” she asks.
Now that won’t happen any more because she is hardly able to use the phone. She doesn’t watch TV any more, though it’s still there, available to her. We took away her stereo about a year ago because she never used it. And the old joke about seniors and the VCR—well now she can no longer even watch a film. She cannot follow a plot. Bravely she says that she reads the novels piled around her room. I hope she does. I hope that what is on page one is enough to get her to page two. She reads historical novels. I know I often skipped the dates. Maybe she does too. Maybe the intense activity of the moment is enough to keep her going.
It’s like 50 First Dates, the movie with Drew Barrymore and Adam Sandler—my mother has lost her short term memory. And much of her long term memory too. But it’s not funny like that film. At least it’s hard for me to laugh when I know she is struggling and angry. It must feel sometimes, like a huge vacuum is sucking her away from the familiarity of her life. That’s why the room and its surroundings are so important. Once she’s out of that context, she could be on the moon. She’s not even sure she is in Chicago, the city of her entire life. I gently remind her.
Almost every time I am with my mother, she gets around to asking me how old I am. When I reply that I am 63, she acts like I’m from another planet. “That can’t be,” she says. Well how old does she think I am, twelve??? It makes me angry, I can’t help it. She’s 94 and that makes me old too. And because I’m a baby boomer with adult children (one still in college) a house to run, a part time job, and a husband who I love dearly and want to be with—can’t she see that my life is going to have some stress in it? Your mother is supposed to get that and help you with it.
Not add on to the stress daily. But she does and she cannot help me. She needs to suck me into the vortex of her vacuum life, pull me to her as often as she can.
Some days are better than others. Blood flow must be getting to those grooves on the surface of her brain because things click a little more and she’s not anguished and crying out.
If anyone has suggestions or words to share with me regarding how to handle these days which are turning into months and years, I welcome your comments.