Beside My Mother's Bed

There are so many thoughts that run through my mind as we struggle with my mother's dementia. I remember something my father said before he died (at 58). He had heart disease and knew his life expectancy was limited. He told me that one thing he feared was that when he died people would say, "He'd been sick for such a long time". I 'kind of' understood what he meant then. I truly understand it now.

My father was not a man who cared what other's thought or said about him so to think that what he feared was what people would say is to underestimate him. What I believe he truly feared was that his life would not have mattered. That when he was gone he would be forgotten and his time here, however brief wasn't meaningful. It was and as I sit at my mother's bedside and look at the same photo albums over and over again with her I see somewhere in the recesses of her blank eyes and expressionless face the same worry. I see her look at the pictures of her family and friends in search of confirmation that her life mattered, that she was here and it was worth it. I look at her now, under 100lbs, able to tolerate only sips of fluids and maybe a spoonful or two of blended food and want her to know that not only did her life matter but it still does. It matters to me and to my sister, to our husbands and our children, to her friends and to her Pastor. She matters to all of us.

She is taking morphine now. For people who do not live in my world, the world of healthcare, the mention of this drug means nothing more than she is getting a drug for pain. For my Nurse and Physician friends, thank you for understanding on a different level the implications of this new regime. You now understand my blog absence for these past days. I didn't know there were so many sudden changes in a chronic disease.

My sister and I still visit our mother at least 6 days each week but we no longer walk with her to the Dayroom for Oprah, tea and cookies. These days we take turns, one of us in the chair by her bed the other on her bed at her feet. We think she still knows who we are but can't remember the last time she said our names. I think of many 'last times' but didn't imagine my name in my mother's voice would be among them and wish I had recognized it when it happened so I could hold onto it now. Before I found myself at her bedside I thought of our lasts in much grander terms, I thought in terms of our last Christmas, last Birthday, last Mother's Day. I had no way to know then that those days, those events are where we put so much energy but in the end are of less importance than the other days, all those everydays.

When my mother dies I know some people will offer comfort by saying that she had been in a Nursing Home, she'd been 'sick' for so long. They'll say these things and think they are offering comfort. They will utter my father's fear. When I hear this what I will picture is my parents together, together in lives that mattered, lives that made the world a better place and I will hear their voices as they say our names.