On behalf of National Alzheimer’s Disease Awareness Month and Family Caregivers Month, Marilynn Garzione will appear as a regular guest blogger for the month of November. She will share her thoughts, feelings, and vast personal experience with Alzheimer’s Disease. Marilynn Garzione teaches at Vassar College in Poughkeepsie, New York and is the author of Released to the Angels: Discovering the Hidden Gifts of Alzheimer’s. Visit her on her website: www.releasedtotheangels.com.
WHEN THE QUESTION IS ASKED
A friend once asked me, “Marilynn, tell me. What is Alzheimer’s really like?” I remember looking at her with a mixture of disbelief and surprise. But then I thought about it. It’s a legitimate curiosity. How do you explain to someone who has never seen the effects or felt the full impact of this disease what it is like? How do you reduce Alzheimer’s to a definition of twenty-five words or less?
I don’t think it comes down to a matter of definition. I think it is better measured in the emotional impact that it has on both victim and family. We cannot know the full extent of awareness that our loved ones feel as they progress through the advanced stages of dementia. We only see their profound loss and slow disconnection from the world we both share. It is part of the cruel silence that Alzheimer’s imposes on its victims.
For a caregiver, the effects are easier to describe. Alzheimer’s comes into our lives without invitation and leaves without apology. In between, we are forced to accept its presence, confront life issues, and deal with decisions we never would have imagined. We know that it will not leave until it has completely destroyed the life of our loved one. And always, we search for the strength to accept.
Caring for someone with Alzheimer’s—impossible? It’s not that it’s impossible. It’s just so constant. It’s knowing that what you face today—the confusion, the uncontrolled emotions, the need for personal care—you will be facing again tomorrow, and the next day…and the next. Without relief. It can at times be an overwhelming awareness of your own limitations in meeting these needs.
Alzheimer’s can be measured in the bad moments. It can be measured in the good. For some of us, we will only be able see the pain and the injustice that this should be happening to us. For others, we will view its presence as a painful intrusion that must be accepted in order to redeem whatever time and quality of life remains.
For Patrick and me, Alzheimer’s did not mean an end to the quality of our life. There was a need to laugh, to be in each other’s presence, to share. Every day I played the piano. Every day he listened. I learned to measure our life not in the amount of pain, but in the moments of joy. It was the only way I knew that could put meaning to what we were going through.
And so I smiled as I turned to my friend and answered, “Alzheimer’s is not who Pat is. It’s what is happening to Pat. It’s not our life. It is what is happening in our life. Our life is still going on.”
Marilynn is the author of Released to the Angels: Discovering the Hidden Gifts of Alzheimer’s. Available at www.releasedtotheangels.com
–Jaime Venditti, 11/16/12