CAREGIVER OFFERS COMFORT IN COMPANION’S TIME OF TRIAL
By Fred Dickey
March 25, 2013
Wally shuffles slowly toward the dark at the end of the tunnel.
He was once Wallace Kantor, scientist, author, professor and companionable life partner. Alzheimer’s disease has turned him into Wally, a 91-year-old man wandering around the house.
Wally was a physicist who was taken seriously. Among many other things, his writings aimed jaw-jutting defiance at the brain of the universe himself, Albert Einstein, when he wrote: “Einstein’s theory of relativity is a misnomer. It should be called a theory of absolutivity.” That irreverence marked him as a contrarian to be reckoned with. I tell you this only to nail down the point that Wally did some heavy lifting in his day.
Alzheimer’s is unthinkingly sometimes called a second childhood, but that can’t be true because children are sharp of mind and active of body. Alzheimer’s is the opposite.
It’s an affliction that savages the mind and then the body. It starts slowly, almost imperceptibly, first targeting the memory and reasoning ability, then over a period of generally five to 10 years, it attacks the body and finally kills its victim.
It is a disease that cannot be suffered alone or in silence. And that fact introduces Carol Brinkman. This story is as much about her as Wally, because Alzheimer’s is a disease that loves to ensnare a caretaker, whose ordeal can almost match the afflicted person’s, frustration for frustration.
Carol and Wally share a home and a bed. It’s been 44 years since she met him and 37 years since she invited him into her house near San Diego State University. Both had been married previously with children so they had been around that block, and elected to be significant others before that cliché was conjured up.
She’s an unusually active and quick-witted 82-year-old whose career was as a chemist in Sharp Grossmont Hospital’s clinical laboratory, where she served patients for 30 years. She earned a retirement to do what she wished, including nothing, if she chose. But Wally’s disease has turned retirement into a tougher job.
Wally’s dementia crept up on her in the sneaky way it usually does, starting about 2007. “He’d have spells of forgetfulness that I attributed to ‘senior moments,’ ” Carol says. “It never occurred to me that Alzheimer’s was a possibility.”
The illness progressed until, finally in 2010, Carol took him to a doctor under the subterfuge of checking out a spot on his skin. The physician quickly confirmed Alzheimer’s. She left the office with a new realization and a new challenge.
Carol takes care of Wally, fixes his food, answers his unending and pointless questions, exorcises his ghosts and patiently reminds him of things that would be simple to a child. The role that she fills becomes for many caretakers a marathon that breaks their spirit, sends them fleeing the house in a rage and even — at their breaking point — causes them to abuse the sufferer whom they love.
Alzheimer’s offers occasional humor that Carol can share with a chuckle, such as the cookbook incident. As Carol recalls it, she is in the kitchen preparing a meal with her Mexican cookbook open. Wally comes in and starts reading it. Then he observes offhandedly that Carol is a Mexican Catholic who speaks fluent Spanish. She corrects him and says she is an American Jew who speaks no Spanish.
Wally is astonished. “Jewish? I don’t believe it. Why did you keep it from me all these years?”
She tells him she had said it many times, to which he replies: “Something like that I wouldn’t forget, especially since you knew I was Jewish. You should have told me. All these years we’ve wasted because I didn’t know you were Jewish. We would have had a much closer relationship. I’m so happy I finally found this out. I think we’ll be much happier together from now on. I wish my mother had lived to see this.”
Another time, Wally said someone was stealing from his bank account. The only way to satisfy him was to go to the bank where a quick-thinking teller told him to open a new account which would end any pilfering.
I’m sitting on the couch talking with Wally. Carol is in a chair facing us. A conversation with him is like dancing in hiking boots. All you can manage is the two-step.
I ask what occupies his day.
“That’s a very tough question. Carol, what occupies my day?”
What do you watch?
“Carol, what do I watch?”
Carol says, “History Channel, Military Channel …”
“I watch the History Channel?”
He turns to me and asks where I was born.
Illinois, I tell him.
“Ah, yes. I’ve heard of that.”
I ask what he’s doing with his time lately.
“Mostly staying out of trouble.”
I presume you always did that.
“No, sometimes I went looking for it. Do you always irritate people?”
Carol says, “He wrote a book about Einstein.”
“I wrote a book about Einstein?” Turning to me in an aside, he says, “Don’t pay any attention.”
She reaches into a bookcase, holds up a hardback and reads the title. “The Relatavistic Propagation of Light.”
“That sounds pretty intimidating.” I say it as a compliment.
He pins me with an eagle’s glare. “What’s intimidating? What you mean is you don’t know what the hell it’s about, so let’s leave it at that.”
What interests you these days?
“Not much, just staying alive and keeping my memory intact. There was a time I was very active in physics, but I got so that, to my great surprise, I was no longer interested in physics.”
“I don’t know why it was. But — I don’t know why. It sort of faded away. I preferred — I don’t know what I preferred.”
A couple of years ago, when Wally was being especially tough to handle and Carol was temporarily in the throes of despair, she asked a nurse from a nursing home to come and examine him. The woman tested Wally and determined he was eligible to enter their facility, but said that Carol couldn’t visit him for 10 days and he would never be allowed to return to her house.
That moment was her Rubicon. Whichever way she decided, it was the point of no return.
“After the nurse left, it hit me all of a sudden: I can’t do this! My eyes filled with tears as I walked into the house. I looked at him. He, too, had tears in his eyes and began crying. ‘Don’t send me away, please don’t send me away.’ I also began crying and said, ‘You’re not going anywhere.’ ”
Though she rejects the label, Carol is, effectively, a housebound prisoner. She can’t go to a movie or out to dinner and leave Wally at home. He has not been a wanderer as many Alzheimer’s patients are, but he could start. He has not fallen and broken a hip, but it’s only a trip on a step away. She can shop only briefly.
Carol says she doesn’t mind her lost freedom, and her tone and expression confirm that she doesn’t. She can’t explain why she willingly does the drudgery of caring hour by hour, month after month, for a man who sometimes barely knows her. She is not required to. The good that we do does not need to explain itself.
When Wally is ready to retire, he typically has to be directed to his bedroom and be told where to hang his clothes, as though a stranger in his own home.
And so it goes. Every day. Carol in Wonderland.
Carol has learned not to put away the skillet too quickly after breakfast because Wally will often take multiple morning naps and after waking from each one, wants his breakfast — again. And Carol reaches for the skillet — again.
That alone could qualify her as a Jewish saint, were it not for the confusion in terms.
Carol’s daughter, Debra Brinkman, recalls the tough days when Wally first became afflicted. “Things used to be worse,” she says. “After his driver’s license was revoked, his angry tirades were daily. Finally, he forgot about driving. Now the issues are smaller. Mostly, Mom’s grateful for this reprieve between his God-awful insufferability and, god forbid, who knows what. Some with dementia go from sweet to angry. She feels lucky he went the other way.”
Carol is a thoughtful person, and that extends to her feelings and her relationship, which has embraced normal domesticity for almost four decades. She says of the man in her life, “I do love him but I’m not in love with him. The way I look at it, if you are ‘in love’ with someone, you feel that way because of what that person does to make you feel that way, but if you ‘love’ that person, it’s more of a giving situation.
“I’m well aware that Wally’s feelings toward me are the same. In all the years we’ve known each other, there has never been anything romantic about our relationship. We are just very good, close friends and know that our mutual love exists, so we have no need to discuss it.
“Every morning, when Wally gets up and comes into the kitchen for breakfast, I give him a big hug and he gives me a big smile, and then I know that the day is off to a good start.”
By any definition, that’s love, and it sounds romantic to me.
Fred Dickey of Cardiff is a novelist and award-winning magazine writer who believes every life is an adventure. He welcomes column ideas and other suggestions; contact him at firstname.lastname@example.org
© Copyright 2013 The San Diego Union-Tribune, LLC. An MLIM LLC Company. All rights reserved.