Our Journey with Alzheimer's Continues
As my wife's caregiver, I've learned that patience, acceptance and humor help us both cope with her disease
I am an early riser and my wife, Cheryl, is not. This allows me a couple of hours to myself which I relish. For over forty years I have been dedicated to a practice designed to ensure I am awake to the joys, but also prepared for the challenges, the day ahead may bring. I read, reflect, and write in my journal. This ritual nourishes me mentally, emotionally and spiritually.
When Cheryl awakes, however, I am on duty. In fact, I just heard footsteps in our bedroom above my office. I shall put the kettle on. This will begin another ritual we have both come to treasure. I make tea and we check in on last night's dreams and plans for the day.
Somehow, the part of her brain that reflects her personality, gregarious and talkative, is diminishing at a much slower pace than the side of the brain that manages everyday tasks.
Cheryl will always ask what day it is and sometimes the reaction is laughter when she can't remember but, at other times, tears of sadness fall down her cheeks. You see, my wife has Alzheimer's.
In one of my morning reflections recently, as I contemplated this vast change in my circumstances, I had a flash of insight: "My life is not my own, yet I need to own my life."
The worse of "for better or for worse" is not something to which you give much thought. Three years prior to my wife's diagnosis, we were young 70-year-olds who were newly married and eagerly anticipating one final huge bite out of life.
An Uncertain Future
Now the future was full of uncertainty, yet in many ways predictable. There is no cure for Alzheimer's and so the journey is being a witness to its progression. Dreams and visions are no longer attainable.
The speed at which my wife's world would diminish was unknown, but it was undeniable that it would. Her brother had died of the disease several years before and observing his decline was painful to all who loved him.
I learned many years ago that there are three primary responses to change, especially unwanted change. The first is denial, the burying of one's head in the sand hoping it is all a bad dream. The second is resistance, the exhausting fight against reality. The third is acceptance, not liking what life has presented, but being willing to face the truth that one's world will, in many ways, be very different.
Our status is that my wife retains a remarkable ability to be social and to communicate. Somehow the part of her brain that reflects her personality, gregarious and talkative, is diminishing at a much slower pace than the side of the brain that manages everyday tasks such as dressing, driving, cooking, and using any form of remote device etc. This is where I come in.
Humor as a Survival Strategy
A fundamental part of our survival strategy is humor. My wife hates her diagnosis, but she accepts it. This lack of resistance allows the space to laugh often; it is magical for the mood that pervades our house.
In this vein, I have been appointed to several positions: executive chef, executive secretary, chauffeur, dresser (my favorite) and several more. Underlying these roles, however, are the requirements for carrying them out successfully and the demands on me physically and emotionally.
To understand me is to know I am a goal-oriented person. Although now in my seventies, retirement is not an ideal as I love to accomplish and achieve things. As a business owner I have been able, until the diagnosis, to sustain a high level of productivity. My personality is one where relaxation begins only after tasks have been completed.
We are in the extremely fortunate position of having significant support from family and friends, sadly not the experience of many in a similar situation. Nonetheless, Cheryl's desire is for me to be her primary caregiver. This is a 24/7 responsibility, whether we are physically together or not. It means always being available or within reach, planning, anticipating, protecting and reassuring. A decision, therefore, had to be made. What were my priorities, or who was my priority?
The answer — Cheryl!
The Need for Infinite Patience
As Cheryl's abilities to look after herself have diminished, correspondingly my ability to participate in any business activities has all but disappeared. To use a contemporary expression, I just don't have the bandwidth. This letting go has been difficult. Ironically, or perhaps serendipitously, it has forced me to examine upon which my self-esteem and self-image is built. From daily doses of external recognition, now my rewards are the gratitude and love of my wife and knowing there is no higher purpose to which I could be committed.
Being patient is an expression of love and compassion for another human being, especially one who is incrementally losing control over their day-to-day functioning.
If there is one word that defines the response necessary for these new realities it is patience, infinite patience. Cheryl's short-term memory is all but gone and so I can provide the same answers or information several times a day or even several times an hour. To protect her self-esteem and emotions, these answers need to be given as if she was asking them for the first time. Even saying in a loving tone, "Darling, I just gave you the answer a few minutes ago," can be destructive.
Being patient is an expression of love and compassion for another human being, especially one who is incrementally losing control over their day-to-day functioning. It is also an exercise, however, in emotional self-control for the caregiver. Constantly subjugating one's own needs for another's, while perhaps selfless, is not easy.
Encouragement in its usual form does not work for Cheryl. The well-intentioned cliches such as: "Everything will be fine," or "You're doing great," bother her immensely. That is because false hope is anathema to her. The truth and empathy for her condition is what she seeks most. She is by no stretch of the imagination a negative person, but in her down times, when vulnerable, the words she wants to hear are: "I am so sorry that you have to go through this."
"David, can you come here please!" A cry from the dining room signals Cheryl is in trouble. As I approach, she has knives and forks in hand and has been endeavoring to set the table for guests who are coming for dinner. She sobs as she stares at the table, to her a jigsaw puzzle, the pieces of which her brain refuses to organize.
"I'm useless, I can't do anything," she said. We move to a sofa, and she cradles in my arms until the emotions ease.
For the first time in my life, I have high blood pressure. As I eliminate contributing factors, one culprit seems to be guilty: stress. Life has presented me with several difficult challenges; the loss of a wife to ovarian cancer and personally experiencing a debilitating treatment for head and neck cancer. I have developed an arsenal of coping mechanisms. It seems, however, I have more to learn.
My philosophy of life does not include "woe is me". I follow Cheryl's example and accept reality. That anticipatory grief has begun, there is no doubt. Gray clouds swirl over me each morning even when the sky is the brightest of blues.
Thankfully, my years of practicing gratitude and the wisdom of age, allows me to ground myself in the moment, and pull back from a projected, gloomy future. It does not bring me comfort, but if Cheryl dies before me, I know I will survive. God, I hate the thought of her not being here.
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.