Without saying a word, Mother handed me a valentine she had received. It was handmade, but childish. Construction paper, crayon colors drawn in odd shapes, hearts glued wherever, signature scrawled.
Emotions surfaced quickly inside me, spanning the range of what was humanly possible—sadness, revulsion, anger—anything but love and happiness.
My father had made the valentine for her at his adult “daycare” for Alzheimer’s patients. I hated—and still do—that this insidious disease stole an adult man’s entire life, his accomplishments, his education, his interest in life, his relationships, his awareness of anything around him, the names of his family members. Alzheimer’s thrust him back into a form of childhood, a childhood that did not even have the skills, knowledge or awareness that, in most children, grow and develop into adulthood. A child bereft of hope for a bright future, facing a slow, lonely decline into what I imagine as a dark void.
He was a grown man making a construction paper valentine for his wife of more than 60 years.
I never asked my mother what she thought about that valentine. She was pretty much in over her head dealing with the husband left to her after Alzheimer’s took over his world. She, my sister and I were dealing in different ways with loss of this man who always called us his girls.
But I was sad—and mad. I was mad that his life had resorted to such childish activities. I’m not mad at the people staffing the “adult daycare” for Alzheimer’s patients. They are trying to create and pull from these victims some sense of normality. They are trying to engage them in something constructive instead of just letting them sit and stare off into space. It’s not their fault; out system of care hasn’t figured out what to do.
That valentine pierced me to the core. The pain really hasn’t gone away in the dozen years since. And I’ve wondered what hurt me so badly.
The pain comes, I’ve decided, because that valentine represents the loss of dignity suffered by Alzheimer’s victims. My father was a human being, a mixture of good and not-so-good, as are all people with Alzheimer’s. But, just like the others, he had built a worthy life for himself and his family. He had failed at some things, but he had succeeded at others.
A 10th grade high school dropout, he later earned his GED, a bachelor’s degree and a master’s degree. The love of airplanes and flying that propelled him toward his first flying lesson at age 16 and into the Army Air Corps during World War II, forming the basis of his lifelong avocation. He could do just about anything to small airplanes, including teaching others to fly them.
His mechanical mind allowed him to repair family cars, to a certain point. It also gave us our first stereo, which Daddy ordered in a kit form and constructed. I can still see the floor where he laid out all the parts, with like parts together. That stereo played as it was designed to do from the first time it was plugged in and turned on.
As a minister, he stood before groups of people at least three times a week and delivered sermons and devotionals that he had researched, studied and written. To do that, one must have confidence and decent public speaking skills. I’ll never forget the time I accidently locked the car keys, his Bible and his notes into the car just before one of those times. He didn’t get angry at me—and he really didn’t need all those props. He remembered what he had intended to say.
And he loved his family, his girls, and tried to do the best he could for us as we grew up. He admitted to my new husband that he had really wished his two daughters could just stay home forever. But, of course, he let us go.
Not a perfect life, but a good one. One of dignity.
Alzheimer’s took every bit of that life away. Each bit of that life dripped and dripped away until it took his last breath. It was a process of loss.
He bought a printer to go with the computer he had, but the printer never got “hooked up.” Daddy was waiting until he read the instructions. But, of course, he never did. He bought a riding lawn mower, gave it a brief try, and asked my brother-in-law to return it.
He quit reading, quit handling family business, lost most of his vocabulary and his ability to articulate simple statements. He had what I call a “canned speech” he gave me when talking on the phone, the same stories, the same weather report, etc.
The patience he exhibited with flying students and with his growing daughters throughout his lifetime left and was replaced by anger.
Names of his immediate family members flew into oblivion. During a doctor’s visit, he was asked if he had children and what their names were. He recalled my name. But he could not recall my sister’s name. She was standing right beside him. During a phone call with his brother, my uncle asked to speak to me. Daddy said, “Jennifer’s not here.” I was sitting on the sofa, facing him.
Once, after having spent the entire day with my brother-in-law of many years, Daddy turned to him and said, “I have to ask you an embarrassing question. What is your name?”
The worst came when he had to ask my mother her name. He might have known she was his wife; he certainly seemed to know she was the one to stay near. Who knows?
The loss of dignity for those with Alzheimer’s is horrendous. I don’t know the solution, but I have thought about small ways that might help.
Practice patience, a most difficult trait to develop and maintain in the middle of the battle.
Be courteous. They are human beings who have had, probably, a full life.
Employ empathy. They are not being “willful” in their inabilities. They didn’t ask for Alzheimer’s.
Speak in a normal voice. They aren’t hard of hearing (unless they really are!)
Speak to the adult they are.
Do away with criticism.
Talk about the now. Dispense with saying, “Don’t you remember?”
Find adult activities they enjoy.
Not an easy task.
Essay taken from my work in progress, In the Gloaming, My Father, Alzheimer’s and Me.
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