This story is heavily embedded within the dark shadows of Alzheimer’s disease. It is the experience of a caretaker and his patient, as she drifted into the sunset of her life.
It was a lovely, sunny day and I was 13 years old when I first entered, with some trepidation, my new high school. Looking across the classroom my eyes suddenly stopped, and just lingered, at the sight of a beautiful girl.
Although at the foolish age of 13, I knew even then this is the girl I wanted to share my life with. I cannot explain why, but Rodgers and Hammerstein, in their unforgettable song Some Enchanted Evening, offer the following wonderful lyrics: “Fools give you reasons; wise men never try.”
HER NAME WAS Virginia. After a brief period of courting, she inadvertently told her mother that she was fond of this “beautiful new boy.” Her mother quickly answered, “It’s only puppy love. You will get over it.”
After eight years of courtship, we found the smallest wedding ring in a jeweler’s inventory, which represented what my World War II-G.I. budget could afford. But we didn’t care. We were in love. After taking our oaths before a justice of the peace, with her parents as witnesses, we went to a frozen Wisconsin resort. The following morning, her first words were: “You are my husband.”
Although I lost Virginia six years ago, that love had grown into a powerful bond, which I know will last forever. We shared 64 years of a rich, full and happy marriage. The R&H show tune that advises young lovers “to cling very close to each other tonight, I’ve been in love like you” captures my feelings. Throughout our lives, she was the wind behind my sails.
Even in her declining years, Virginia would mildly boast that we were childhood sweethearts. And she was proud of the three wonderful children she raised. I was too busy with my career to provide much assistance.
Eventually I retired, and while preparing for a cruise to help celebrate this milestone, she became very angry in response to an offense I had committed (taking too much time to purchase an item). Such vitriolic behavior had never occurred before. I was shocked and confused because such a response was outside her personality. I could not understand, but in looking back, this was the first warning sign that something was amiss.
While several more instances of this behavior followed, about two years later she became very irritable – no outbursts, just persistently irritable. Eventually, this personality change began to wear on me, and I seriously thought our marriage was in jeopardy. But just as suddenly, the petulance ceased.
VIRGINIA’S SHORT-TERM memory began to give way. She also began to do bizarre things. Finding neat packages of a knife and spoon along with an address book and other mysterious objects in the glove compartment of my car became a frequent occurrence. Her explanation: “I am going home.” But you are home. “Oh.” This act is now known as “sundowning.”
By this time, I was convinced she was suffering from some form of dementia. To persuade her to seek medical aid was fruitless. Not only was she somewhat of a stoic, she also was in total denial.
Her handwriting was becoming illegible. Upon reading a handwritten note from Virginia, her friend remarked that she felt very sorry for her. Being in denial, Virginia was puzzled by the comment. I did not have the courage to explain.
Virginia also became very withdrawn socially. Of course, our conversations became short-lived to nil. My contact with her was virtually confined to hugging and holding hands. I believe she understood my feelings. That brought her pleasure.
In her early instances of memory loss, I confess to reminding her, sometimes forcefully, of these lapses, especially in their frequency. I feel remorse over my acts, since I obviously now know she had no control. (I later apologized, but she appeared not to understand.)
FINALLY, HER ability to express herself in proper syntax, to articulate rationally and to pronounce syllables clearly was being seriously impaired.
I decided again she must have medical attention, but she resolutely refused. Under the guise of submitting to an annual physical examination, and alerting the doctor to also evaluate the patient for possible dementia, we were able to have Virginia examined. She showed all the classic symptoms of Alzheimer’s. She was prescribed drugs that could yield only short-term benefits, but that was superior to nothing. And I continued to try making her as comfortable as possible.
To me, this was the beginning of the so-called “long goodbye.” She began an erratic decline in all measures of human performance. The few days in which she felt better, and could engage in limited rational discussion, were followed by periods of decline. But those days of rationality I learned to cherish.
On one such day, about three years before her passing, she finally conceded (surrendered meekly might be a better expression) that something was wrong. I may have mumbled something in response, but for the longest time I could only hold her firmly close to me. Better than words, that told her what was in my heart – that we would always be together, spiritually if not physically.
My advice to caregivers: Take advantage of any fleeting moment of rationality and willingness to converse by engaging in plain conversation.
In the evenings, Virginia often chose to sit on a couch, head on my shoulders with my arm around her, trying to become interested in a TV program. She would quietly fall asleep, and about 9 p.m. I would awaken her and bring her to bed.
After tucking her in, I would whisper “I love you” and softly kiss her. But as she weakened, she became less responsive to these acts of affection and eventually became indifferent to them. But one lucid day about four months before her passing, she responded with a strong “I love you, too,” and with an affectionate kiss. This was her last response to my good-nights.
VIRGINIA DEVELOPED physical balance problems rather early in her declining years, and tripped and fell often. We agreed early on that I should get a firm grip on her arm when we took our daily walks. But while in the house she stubbornly insisted on walking without any aid. Yes, she tripped several times, once falling against a wall and mildly dislocating her shoulder. My physical condition had suffered somewhat and I could no longer lift her into bed. So I called the fire department, and a young, strong man arrived quickly and promptly picked her up.
The inevitable day arrived: I consulted her doctor with the plea that I needed assistance in her care. I contracted for hospice care, and it was not long before Virginia was placed in a hospice care facility.
Within a few weeks she gave up her strong fight. I was there. But that flame lives on. It will never vanish.
(The writer is a professor emeritus of financial economics at the University of Georgia. He lives in Aiken, S.C.)