You will meet me several times every day as I step into your examining room holding the hand of someone I love. You probably don't notice that I am holding my breath as you look at the test results and speak the words I expected and never dreamed I would hear…“Alzheimer's disease.” At that instant you may think I can take it all in and understand the gravity of the words you have spoken. I cannot. It is only with the passing of each hour that I can truly grasp what the disease is capable of and how totally vulnerable I will feel as I watch in utter despair.
I walk back out into the lobby of your office a changed person, living in a separate world. Nothing is as it was. “We” will become “I”. My partner, my parent, my friend will fade away from their own life. Do you see me standing there, wondering what I am supposed to do next? No follow up appointment? I don't understand. There was always a follow up appointment…what now?
As I walk out into the “real world” I pass someone else who is clasping the hand of a loved one and as they wait for those words that they know are coming but they never dreamed they would hear.
In the hours, days, weeks and months since we left your office our lives have become a tangle of crisis strung together into a 24 hour day. My loved one wants to go home and cries and pleads that I take him home. He stands in his own living room crying to go home. The night time is filled with episodes of anger and incontinence and nightmares. His sleep is fitful at best, barely sleeping. I lie awake in fear. What if he goes outside and I don't hear him. What if he thinks I'm someone he is afraid of? I can't close my eyes but tomorrow will start whether I have closed my eyes or not.
He asks “Where is my wife?” as I hold his hand. He asks “Who are you?” as I twist my wedding band and my heart is breaking. He was my soldier and I was his bride. He fought a war but this war he will not win. He was the father, the man who knew everything and taught his children to be gentle and kind. Now he is raging and hitting and we are afraid. There is no follow up appointment. The words have been spoken. There is no road map.
When tomorrow comes and I walk into your office, a different face, a different name, please remember that I am the wife who will answer the question “Where is my wife” a thousand times a day. I am the daughter whose father will look through her as if I am transparent. I am the son who will have to take my father's keys and checkbook to protect him from himself. I am the one who lives in a world where up is down and down is up and there is no follow up appointment. Please help me understand.
Please give me more than a medical diagnosis. Give me your compassion and see me. See ME, not just the patient's wife, daughter or son. See that I am shattered and afraid. Please SEE ME.
Author of "Into the Mist, When Someone You Love Has Alzheimer's Disease"
B.S. Education, Art Therapy
Public speaker and talk radio guest