Our Love Story Is A Story of Alzheimer's
As my wife's disease progresses, we are resolved about her VSED (Voluntary Stop Eating and Drinking) choice
My wife, Cheryl, has Alzheimer's. The news, when first shared with family and friends, was met with shock and sadness. "But she communicates so well," our friends would say. The response is indicative of the lack of knowledge about the disease. How Alzheimer's progresses is unique to each person.
Two years after her diagnosis, my wife remains socially skillful. Her ability to perform everyday tasks known as "executive functioning" is, however, reduced every day.
No more driving, reading, cooking, using a computer or cell phone, dressing or other functionalities we take for granted. She has little short-term memory, and every morning I remind her what day it is and share the plans for the day.
She Lights Up a Room
If there is nothing scheduled, she easily gets depressed. I endeavor, therefore, to keep her busy since she remains fully aware of family and friends and having meaningful conversations is still well within her capabilities. The neurologist explained these distinct progressions as one side of the brain is dying, while the other remains relatively healthy.
It begins with my wife's acceptance of her condition. There is no denial. There is frustration, sadness and tears.
My wife is a bubbly, effervescent person who lights up a room when she enters. Highly talkative,
she never lets a fact get in the way of a good conversation or debate. She is quite content and non-defensive when accused of being always certain, often wrong! Opinions flow like a stream of consciousness on any matter one wishes to discuss. Being informed on a subject is not a priority. It's the social interaction that matters.
For the uneducated (not meant as a criticism), the vision of an Alzheimer's patient is a person in a memory care facility gradually losing his or her ability to recognize family and friends. The person is seen to be lost in a world the rest of us cannot comprehend. This life can go on for years.
The stress on families is significant. My wife's brother traveled this journey several years ago, and my wife decided that hers would not be the same.
If one can be deemed to be fortunate in a situation such as this, then I am. It begins with my wife's acceptance of her condition. There is no denial. There is frustration, sadness and tears.
There is negative self-talk about her growing incompetence. There is anxiety when she does not know where I am. But she is not at war with the disease. Her acceptance opens a myriad of possibilities.
The first is open and honest communication. I can ask her about what she is experiencing, and she will do her best to explain. She will ask how I am feeling, and I feel free to share. The result is a growing intimacy and deepening of our love for each other.
There are, of course, many emotional moments, but there are also many laughs. My wife has a great sense of humor and laughter is healing for both of us.
The VSED Choice
The most significant decision my wife has made is the choice of how and when she will die.
From watching her brother and others she knows who have had Alzheimer's, my wife will not go into memory care. She has no fear of death; wandering aimlessly around a nursing home not knowing who she is or recognizing her loved ones is anathema to her.
My wife has chosen a process, which is legal, called VSED: Voluntary Stop Eating and Drinking.
Her exposure to VSED came from a book called: "Choosing to Die," by Phyllis Shacter. The book is described as follows: "This memoir follows the journey the author took with her husband, who decided that he didn't have to live into the late stages of Alzheimer's disease. This is their love story, their partnership, the brave territory they traversed, including how they prepared themselves with proper medical and legal guidance."
Public opinion about how and when people should die has been evolving. When a person has a terminal disease, and chooses to be taken off life support or medication that enables the continuation of life, some believe the prolonging of suffering is pointless and, perhaps, could even be judged as inhumane. Should the individual decide also to no longer eat or drink, there is little resistance. Why prolong the inevitable?
The challenge for the Alzheimer's patient is that the physical body can be very healthy. Cheryl is a prime example. At 74, she was recently assessed by her doctor as in exceptional health. The prognosis for many more years was excellent.
The quality of that life is where the problem lays. Many more years of what? Without an intervention, it would be an undetermined time of staring vacantly into the eyes of those she had once loved and adored and having no connection. The wife of a close friend of mine spent 10 years in this condition.
Alzheimer's is a terminal disease. There is no known cure. At some point, my wife's life will have deteriorated to where nothing matters to her. At that time, she will begin the VSED process.
Married at Age 70
In preparation, and while she still has good cognition, Cheryl has put all her affairs in order. She has been ably aided by one of her daughters who is an End-of-Life Doula. Together with her other daughter, they have even begun planning her funeral.
The problem is Cheryl has so many songs and hymns on her playlist we joke that the celebration of her life is currently looking like a three-day affair!
The Alzheimer's journey was far from our thoughts. I manage my days by not projecting into the future; it does not serve me.
It is not my intention to answer all the questions about VSED. Those are best accessed through the book: "Choosing to Die."
Personally, however, I was curious to discover what others in our circle may feel about VSED, particularly those with strong religious convictions. I was surprised by the level of acceptance and understanding.
There are those, however, who hold the belief that only God can determine when you should die. The conundrum is that in the case of say a terminal cancer, the notion of VSED appears acceptable to them. As the knowledge and awareness of VSED expands, I am sure this will be grist for many a conversation.
My wife is a very spiritual person. But her theology, and how she views God, is that suffering is neither an act of God nor desired by God. Suffering is certainly a part of the experience of life, but the human journey is about learning to minimize suffering and even to eliminate much of it. A high ideal for sure, but it provides insights into my wife's perspective of life and her decision around VSED. She does not want to prolong her own suffering or those of her loved ones.
As I write these words, my wife and I have not yet reached our fifth wedding anniversary. We married at the age of 70, with a vision of many wonderful years together. My first wife had died of ovarian cancer in 2003, and Cheryl was divorced.
The Alzheimer's journey was far from our thoughts. I manage my days by not projecting into the future; it does not serve me. I know how grief feels and I have no need to pull the future into the present. Yet, a persistent melancholy informs me the grieving has already begun.
How much time we have left has yet to be determined. But, whatever there is, we are committed to wringing out as much joy in each day that we can. It is not easy and requires planning, discipline and focus. Yet, as Cheryl's memory fades, the memories we are now creating will be one of her most precious legacies to me.
David McNally is a best-selling Penguin Random House author. He has enjoyed an extensive business career as a business consultant and professional speaker. He was married to his first wife for 33 years before she died of ovarian cancer at the age of 57. Together, they had five children. At the age of 70, David married his second wife, Cheryl. Combined they have a total of 12 grandchildren.