Alzheimer's -- The Long Goodbye
Published July 13, 2014 | By Dan O'Rourke
Recently, my wife Marie because of advancing Alzheimer's was moved from the memory unit of an enriched housing facility to a county facility with complete nursing care. She has made the adjustment well, but I have not.
Now, I go in regularly to the county facility to help feed her a daily meal. The overworked staff appreciates my help, but after the meal, and after we have put her down for a nap, I leave sad and depressed.
I remember Patti Davis' book about her father, President Reagan. She called it, "The Long Goodbye." In the book she describes losing her dad to Alzheimer's as saying goodbye in stages. She writes, "All you can do is watch, cry and whisper a soft stream of goodbyes." I am crying as I type this; I can relate fully to what she says.
Jay Gilbert, who watched his loving, vital and intelligent father sink further and further into this dementia, called the disease "progressive, incurable and ruthless." He knew well of what he spoke. Alzheimer's is ruthless, cruel and callous.
There is another book on Alzheimer's, "Still Alice" by Lisa Genova. In some ways, Marie is still Marie. Gentle, affectionate. Even as the disease progressed, she has never been angry, nasty or profane. That is not true of all patients, but "Still Alice" is another column.
Forty some years ago, I married Marie "for better, for worse, for richer, for poorer, in sickness and in health." We had many, many blessed years in health. I strive to remember them in the midst of this sickness and the long, sad goodbyes it demands.
I have the greatest admiration for the staff in both of the facilities where Marie has been. And I am grateful for friends and family who has supported me. I could not have carried this without them. The staffs are underpaid, often over-worked and with rare, rare exceptions are loving and caring to those whom they bathe, toilet and clean, dress and feed. I am often in awe and am reminded of the words of Jesus about the last judgment.
"Come, you blessed of my Father, inherit the kingdom prepared for you from the foundation of the world: for I was hungry and you gave me food; I was thirsty and you gave me drink; I was a stranger and you took me in; I was naked and you clothed me; I was sick and you visited me; I was in prison and you came to me.
"Then the righteous will answer Him, saying, 'Lord, when did we see you hungry and feed you, or thirsty and give you drink? When did we see you a stranger and take you in, or naked and clothe you? Or when did we see you sick, or in prison, and come to you?' And the king will answer and say to them, 'Assuredly, I say to you, inasmuch as you did it to one of the least of these my brethren, you did it to me'" (Mt. 25: 35-40).
Alzheimer's patients are the least of these brothers and sisters. In this long goodbye, my faith has helped and continues to help me greatly. I mediate and pray often on all this, but I think practically too.
As I feed Marie, I remember the tens of thousands of meals she once prepared for our three children and me. I remember the years she put the children down for naps or put them to bed at night. And how, as I wrote when I dedicated my last book to her, that she read every word of my newspaper columns carefully, criticized them gently and supported me even when I didn't deserve it.
Some will find this column overly personal and emotional, but I meant it to be. I wrote it deliberately with aforethought. I hope my experiences will help other caregivers deal with their pain and sadness as they struggle with their own long goodbyes.
Retired from the administration at SUNY Fredonia, Daniel O'Rourke lives in Cassadaga, NY. His column appeared in the Observer, Dunkirk, NY. A grandfather, Dan is a married Catholic priest. He has published several books including his most recent, The Very Last Word: Reflections on Life, Spirituality, and Politics (2015), The Living Spirit (2011), and The Spirit At Your Back, Spiritual Reflections on This and That (2007).