You may recall that back on March 1, we accepted the #40Bagsin40Days decluttering challenge for Lent. We’ve been doing quite well and have come across some interesting and long forgotten items in the process. But, one that I came across yesterday really touched my heart and made me think.
It was a copy of the speech I wrote for an Alzheimer’s Candlelight Memorial Service, about a year after my Mom passed away. It brought back so many memories of that heartbreaking experience, but it was also eye-opening when I realize, as I stare my upcoming 70th birthday in the face, that my Mom had recently turned 71, when she and my Dad moved from Denver back to Sioux City and into our home because neither of them were able to live on their own any longer. The theme of that service was “Face to Face With Alzheimer’s” and I would like to share that speech with you all today. It’s as valid today as it was then as Alzheimers continues to strike so many families. Since this was written, my own mother-in-law and brother-in-law have also fought battles with dementia.
When Alzheimer’s Disease stole Jeannette Williams memory and then her life, she was no different from millions of others facing the same fate…except for one thing. She was my mother.
It started out with little things – lapses in memory – forgetting to call or send a card on my birthday – incidents that we might have found strange momentarily, but quickly shrugged off. She was hundreds of miles away and we only saw her a couple of times a year.
But, in January of 1995 my Dad’s diagnosis of terminal cancer brought my parents from Colorado back home to Iowa…and brought us all FACE TO FACE WITH ALZHEIMER’S.
I know of no other disease that focuses our attention so closely on the human face…because it is the eyes of the Alzheimer’s patient that reflect so much of what they’re going through. In their eyes, you may one day see confusion and the next day see blissful acceptance of their world. One day you see fear and the next day, child-like trust. Eyes that seem to be desperately searching for answers today may, tomorrow, offer an overwhelming outpouring of warmth and love.
Alzheimer’s Disease is often referred to as tragic – destructive – and devastating…and it is all of those things and more. But, over the years, I have come to realize that we can find another side to Alzheimer’s if we try…a side that softens the tragedy, limits the devastation and helps to provide the balance so necessary in maintaining a healthy outlook on life.
Nicholas Spark’s bestseller, “The Notebook”, chronicles the enduring love story of a couple, who in their golden years, suddenly find themselves FACE TO FACE WITH ALZHEIMER’S. It recounts their experiences as they adapt to her gradual loss of memory and function and his discovery that with acceptance of the changes and adaptation to the circumstances, he could, in some way, turn tragedy into triumph. He wrote…”I learned what is obvious to a child. That life is simply a collection of little lives, each lived one day at a time. That each day should be spent finding beauty in flowers and poetry and talking to animals. That a day spent with dreaming and sunsets and refreshing breezes cannot be bettered. But most of all, I learned that life is about sitting on benches next to ancient creeks with my hand on her knee and sometimes…on good days…for falling in love.”
I took my mother out to buy a birthday card and gift for my Dad shortly after they moved in with us. When we got home, I gave her a pen and suggested she sign the card. At that time, her speech and writing skills were waning but not gone. She took the pen and wrote Happy Happy. Love J…and the rest of her name just trailed off. She handed the card back to me and smiled broadly. When Dad opened the card he started to cry. It was so hard for him to accept what was happening to her and to see graphic evidence of her decline. But, looking back, I vividly see what he didn’t see…that as she wrote Happy Happy instead of Happy Birthday, she truly was Happy Happy at that moment. Happy that she was able to give him a card on his birthday just as she had for the previous fifty years that they had been married. And, I know that is true because when I close my eyes I can still see hers shining as she handed the card to me.
I had no idea when my parents moved in with us, to what extent Alzheimer’s had altered their lives but I quickly came to realize that my mother had very little ability to care for herself at all at that point. She did not know how to run her own bath water and get in the tub or how to select appropriate clothing and put everything on in the proper order. Since Dad was too ill himself to continue caring for her, I found myself in an abrupt role reversal situation. As I helped her into the tub that first time, she looked at me with the faith of a child, just as I must have looked at her decades before when the roles were reversed, and she said, “You’re a good one.” That scenario brought tears to my eyes at the time, but those words are one of my most treasured memories today.
The following year, after my Dad had passed away and my mother had moved to a nursing home, we had a birthday party for her. She really didn’t understand what was going on or how to open a gift or even what they were once someone else had helped her open them. But, when we sang Happy Birthday, her eyes lit up and she got a big smile on her face and she started singing along with us. That was a Happy Happy moment for her, in spite of everything.
Eventually, the progression of her illness brought her to the point where she could no longer command her mind or control her body. She was unable to feed herself or to walk without assistance. In a very short time, she reached the point where walking to the dining room, even with assistance, was too difficult and Hospice ordered a wheelchair for her. She began having difficulty eating and seemed to be forgetting how to swallow. Yet, even then, her spirit was indomitable. At that point, she seemed to make a conscious decision that enough was enough. Up to then, in spite of everything that was happening to her, there was a spark in my mother’s eyes that you couldn’t miss. The staff who helped care for her often commented on it too. Her face always lit up when we walked in and even though it had been years since she called me by name, I could feel her love by looking in her eyes.
When we went to visit her on Sunday, November 2, 1997, there was a chill in the air and a tiredness in her eyes that I hadn’t seen before. It was trying to snow and she was gazing out the window as if she were looking at something that the rest of us couldn’t see
On Wednesday, November 5, Mom laid down on her bed after lunch and went to sleep.
Losing my mother to Alzheimer’s Disease was a very painful experience…but the lessons of life that we learned from that experience offer a special pain reliever that, over time, has been very helpful This experience has taught us, first hand that devastating diseases do not lessen the value of human life…that a distressing end to life as we know it does not have to be a time for anguish and regret. There is value in human life at any stage or in any condition and that value is love.