“Doctor, are you sure?” I questioned. “We’re never sure, but all indications point to Alzheimer’s as your mom’s diagnosis. Mary, this disease is not something your 88 year old dad can take on alone. It is going to be a family affair.”
And indeed, that is what it has become. This small family of four will take on years of care giving, financial concerns, housing options, emotional support and enough decision making to last a lifetime. My sister, Pat, and I communicate nightly via email.
Now it is just before midnight as I sit in my dimly lit room listening to my computer go through its bedtime ritual of pulling dark drapes across each window, closing up for a well-deserved night of rest. The quiet that envelops the room upon its final good night is deafening.
I always leave Pat’s email until last. It has become a daily record of our loss measured ounce by ounce. I have saved all of our correspondence and during nights when sleep does not come, I re-read those emails and see how over time our cumulative loss is not measured in ounces but in pounds. Day by day, month by month, my sister and I have been participants in mother’s long good-bye.
Mom’s voice plays like a recording through my mind. “Mary, hurry now, you’ll be late for school. Is your homework in your book bag? Today is band. Do you have your clarinet? Remember you have play practice after school. Your sister has an orthodontist appointment but we should be home before you. I don’t want you coming home to an empty house. We can’t count on Daddy to be here any afternoon this week. I am taking him to the airport at 10:00. He has business in Baltimore.
”Yes, Mom was the organizer of our days, the keeper of time, the maker of our memories and the heart of our home. Now we have become the organizers of her days, the keeper of her time, the reservoir for her memories.
Tomorrow I will attend my Alzheimer’s Support Group meeting. It is the evening I look forward to each month with both anticipation and dread. What will I hear that will tug at my heart and bring the tears that lie so close to the surface? It’s a night to learn from one another, find support and understanding, share our stories, share our frustration, share our small triumphs and share our loss. Each night I return home from the meeting both grateful and fearful…grateful for the burden I have when compared with others; fearful of what lies ahead. Thoughts will spin through my mind upon my return home and I know I will awake from fitful sleep drained of emotion.
When I look at my mother, the flash that goes through my mind is always the same; a glaring comparison of what she was and what she has become. She would be humiliated, saddened, appalled and unbelieving that this ever should happen to her and thus to us.
Her care has become a family affair. I am the researcher, a font of medical jargon, the reader of articles, the follower of drug trials, the dreamer of cures. My sister is the maker of future plans, preparing for the road ahead that I refuse to see. But ahhh, Dad is her rock. The one who says he will never leave her. He is the one who does not yet know how bad his days may become; how he will be bone tired, weary of his tasks, annoyed with her very presence and resentful of the loss of his freedom. It is bound to come, but right now this man who has been her husband for 65 years believes that he can do it all and who are we to break his bubble?
And so we go on from day to day watching the slow but steady pace of this robber of memory we call Alzheimer’s. How will it end for us? What will tomorrow bring? How fast will this disease consume her until she is unrecognizable to us as the person we knew? Whatever lies ahead, I am most grateful that it is and will remain for us a family affair.