For Bud and Billie, time will slip away. Unrelenting, like watching sand in an hourglass descend from top to bottom.
Theirs is a story I hated to write. Not just because of early onset Alzheimer’s. But because of our knowledge of how others suffered from cancer.
In our 58 years together, my wife and I have known and worked with people diagnosed with terminal cancer. Often women much younger than the two of us. Colleagues, secretaries, associates.
And we have known others who survived probable death by letting their doctors take aggressive measures. Mastectomies, hysterectomies, other painful and life-changing procedures.
But those who were not so decisive or lucky were women in their 40s, with young families. Loving husbands. Beautiful children. Outstanding in every way. Sometimes gone within a year from cancer.
My wife and I avoided cancer. But not everything.
In her 60s and early 70s my wife struggled through many medical problems: a serious potassium deficiency, a painful gallbladder attack, seizures caused by epilepsy, and incapacitating back pain. She also underwent hip surgery and was treated for other breaks, after falling unexpectedly. Some benign cysts on her back. Easy to remove surgically.
But no cancer.
The real onset of her Alzheimer’s was hard to pin down. Her problems with forgetfulness and other manifestations of dementia were slight in the beginning. Just “senior moments.”
Our internist, while suspecting dementia through office memory tests, was astounded that she still enjoyed solving Sudoku puzzles.
So, it wasn’t early onset Alzheimer’s. That much was certain.
An early cancer diagnosis is awful. But so is early (rapid) onset Alzheimer’s.
There are two significant differences:
Cancer diagnoses can sometimes be averted through new and evolving forms of treatment. And, unless an inoperable brain tumor is involved, it does not usually shut down cognition.
Early Onset Alzheimer’s cannot be treated definitively. Not now at least. Death will likely occur when predicted. And cognition will noticeably diminish each day.
Billie will decline rapidly and die in roughly five years from early onset Alzheimer’s. And she will likely feel her cognition diminish each day.
That by itself disallows any sugarcoating of the problem.
If there is any good news, it lies in the fact that the syndrome will not drag on for a decade or more, exacerbating the suffering of both Billie and Bud year after year.
And long-term care will not be as expensive.
I suppose there is a reason many men are called “control freaks.” It is almost stereotypical that men try to “fix” things that concern them.
There is no “fix” to Billie’s condition.
However, one reason I wrote Bud’s friend Jake into the scenario is because his take on life varies so much from routine and measurable elements. Things like amounts of medication and rest. And counting the years going by.
For Jake, life has nothing to do with numbers. It has everything to do with experiences, reaching out, absorbing thrills, and feeling deeply. He is more fascinated with hedonism and stimulating the senses.
The only way Jake’s attitude can be described as service to others is in its uplifting enthusiasm. His exuberance is catching. About sports teams he follows. About films he has seen or books he has read. About interesting people he meets and places he has seen.
Art, music, the soft loveliness of the day.
In some ways Jake wears people out. On top of that, they often question his morality. But he is not evil in any discernable way. He certainly does not leave a trail of debts, duplicitousness, or tears. In some ways he is just a Peter Pan, the little boy who never wants to grow up.
Jake approaches a fanciful way to help Billie and Bud. Silliness with a serious purpose.
Billie’s condition can be “managed” up to a point, using more traditional techniques. People from the church stop by and tell her how much she is loved and in their prayers. Neighbors bring interesting food, beautifully prepared and tasty. Bud hosts little parties at the house, surrounded by friends and relatives he and Billie love.
It’s all good. Bud and Billie appreciate the love and concern everyone shows them.
But Jake is almost like psilocybin, a drug being tested now to overcome anxiety in people with terminal diseases.
From what I understand, it is similar to LSD in its abilities to reduce dependencies, depression, and fear. It somehow interrupts the brain’s compulsion and fear centers in ways that comfort a patient who knows death is near.
I’m not advocating psychedelic drugs for Billie, nor have I created Jake as a proponent of psilocybin.
The purpose is that BOTH Billie and Bud need an outside influence. One that creates hope and perpetuates a positive connection between them for the upcoming five years.
In the story line I make Jake a kind of catalyst for that hope and positive outlook.
Fear of death is wired into our psyches because, like loneliness, it is a survival mechanism. Being part of the herd protects us from the tiger. Fearing pain and death protects us from doing something to jeopardize our lives or well-being.
My own problems with severe claustrophobia and panic attacks, while taking care of my wife at home, could be alleviated by a significant distraction. An intense conversation. An eye-opening experience. Marveling at something I had never seen or heard before.
Mild sedatives could also help. But a powerful distraction worked better. Something unusual, fun, even dramatic.
That is why I created a “Jake” for Bud and Billie. Somebody like Steve Martin’s “wild and crazy guy.”
The oddball who takes them to the zoo on a whim, or packs them off to see one of his girl friends who is a standup comic in a local club, or who pays for and accompanies them on a weekend junket to Las Vegas.
The Jake I created is more than a “bucket list” guide. He is the exclamation point at the end of the sentence.
He is the medium who, through outlandish actions, tells Bud and Billie how much he cares, and relishes the time he spends with them.
Billie may not remember those fun times, but the underlying joy she feels might be perpetuated to the end.
And Bud will be grateful.
Continue to seek ways to take care of yourself.
©2020 Stu Ervay – All Rights Reserved