Editor’s note: Several years ago, I asked Janie Long McCord to write an article for The State Journal about her parents Tom and Jane Long’s journeys through Alzheimer’s disease. This past July she self-published a book, Tangles Times Two, which is a collection of her memories of caring for her parents during the disease. What follows here is a mix of my review of her work and her comments.
In just 31 pages, Janie Long McCord’s book grips your heart and touches your soul, especially if you have or have had a family member or friend whose life has been blighted by Alzheimer’s disease.
The book was one McCord had to write in order, as she says, “…to move forward so I could write more.” The catharsis for her vicariously serves us as we read, hear about – and sometimes experience first hand – this dreaded disease, a thief of mind and memory.
I was personally touched by the little volume because I knew both Tom and Jane Long, having written a story back in the 1980s about Tom’s woodworking for our old Mainstreet magazine and shared times with them at First Christian Church.
Also, my father’s only brother, Virgil, spent the last decade of his life circling in Alzheimer’s heartless downward spiral that cruelly robs the sufferer of his or her mind, memory and dignity – and with equal cruelty devastates the lives of loved ones.
At first extended family members and friends stand near to help as the “thief” slowly takes more and more, returning often to its prey. But just as surely they drift away as “funny” little incidents – some of which Janie records in her book – become cause for concern for the safety of the sufferer and others.
The person these folks knew as a lifelong friend is slowly leaving and somewhere in the odyssey of this “long goodbye” they take their leave and are gone.
At the end, which mercifully would come sooner rather than later but rarely does, it’s usually the spouse or one child (two or more if you’re really lucky) caring for a parent who no longer has any idea this “nice person” was the person they married decades before or the baby they cradled, the little girl or boy that called them “Mommy” or “Daddy.”
In the case of Tom and Jane Long, it was Jane who was the primary caregiver for Tom before, in a cruel twist of irony, “The Monster” turned on her and their daughter Janie became the caretaker and decision maker.
For my family, my father couldn’t even go see his brother because that man wasn’t the one he’d known, the brother who was outgoing and never forgot a name. At the end – and long before it like for Tom and Jane – he didn’t even know his own name, let alone that of his beloved wife Bertha who cared for him to the very end.
Tom Long’s Alzheimer’s was diagnosed when he was 72.
Jane Long’s was recognized when she was 82 when, after some tests the doctor said there were “plaques and tangles” in the front part of the brain, common with Alzheimer’s patients. Janie used “tangles” in the title of her book.
Once the diagnosis is made, the road to be traveled is more or less the same for all. At first there’s care for the patient in the familiar surroundings of his or her home, usually by a spouse or nearby family member. Then comes a move to a “smaller place” followed by an assisted living center when staying at home becomes impossible, and finally to a nursing home.
Usually there are stops along the way in the hospital after falls or bouts with some illness, but they are typically short and sometimes filled with their unique challenges as hospital personnel aren’t fully prepared or trained to deal with the Alzheimer’s patient, particularly when the disease is advanced.
Janie shares some of these stories, including Tom’s broken hip and her mother’s need for a bed that could “contain” her, called a “veil bed.”
And all the while, as the patient’s “decline” continues, the caregiver is frantically trying to deal with her parent’s needs, finding a roommate with whom an Alzheimer’s patient can “live,” placate health care professionals, deal with insurance companies and dwindling funds … the list goes on and on.
In 31 pages, Janie deals with all of these things in a unique style divided into little vignettes, often alternating between her parents’ experiences – and then her mother’s when Tom was gone.
Janie shares the challenges of taking the car keys from her parents, saying her father handled it better than her mother. That, she said, is common for those of her parents’ generation when the woman often didn’t work out of the home and driving was her only means of “escape” into the world.
She writes of her father’s imaginary smoking when he was no longer permitted to do the real thing for fear he’d hurt himself, those around him or the house. He took his “cigarette” all the way from the “pack” through to “extinguishing the butt” – without ever taking a real puff or holding a real cigarette!
Janie writes it was something to watch her dad smoke in this fashion.
TUGS AT YOUR HEART
The book offers the perfect mix of stories from their final journeys mixed with Janie’s experiences and reflections as caregiver. And, of course, along the way the reader learns about Alzheimer’s disease.
She writes of the time when her mother finally had to stop participating in church activities, which she dearly loved. From the book:
“I was able to finagle explaining the absence of these activities in her life when she asked, ‘How come I don’t go to church anymore?’ My response was, ‘You just went a couple of days ago.’ Half the battle in giving care to an Alzheimer’s patient is learning to let the truth pass silently although painfully by … For some family caregivers, it just takes a while to accept the truth that the truth is no longer relevant.”
She writes of taking her three-month-old grandson with her one Sunday afternoon while sitting with her father:
“The generations were circling me that day, from my 77-year-old Alzheimer’s-infested father to my bright shining new grandson. My father’s diminishing mind was becoming more and more like my grandson’s developing mind …
“One was regressing into total silence because he could no longer remember any words and the other was just beginning to coo – both wearing diapers. Perhaps there ought to be a pause in the circle to give the care giving generation in the middle a break. Better yet, maybe the lack of a pause in the circle reassures us of life without end.”
“I believe my parents are with me always and they are pleased to know they, in fact, did not go through years of Alzheimer’s disease for nothing. Hopefully their story is now helping those who have already gone through it, those who are now going through it, as well as those who have yet to go through it.”
WHERE TO GET THE BOOK
Tangles Times Two by Jane McCord, subtitled “A Collection of Memories of Two Parents with Alzheimer’s Disease,” is currently available at Poor Richards Books for $10. McCord will be signing copies at Poor Richard’s on Nov. 8, the first night of the Candlelight Tour and at the Kentucky Book Fair, Nov. 10.
ABOUT ALZHEIMER'S DISEASE
Alzheimer’s disease is an irreversible, progressive brain disease that slowly destroys memory and thinking skills, and eventually even the ability to carry out the simplest tasks. In most people with Alzheimer’s, symptoms first appear after age 60. Estimates vary, but experts suggest that as many as 5.1 million Americans may have Alzheimer’s disease.
Alzheimer’s disease is the most common cause of dementia among older people. Dementia is the loss of cognitive functioning—thinking, remembering, and reasoning—and behavioral abilities, to such an extent that it interferes with a person’s daily life and activities. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person’s functioning, to the most severe stage, when the person must depend completely on others for basic activities of daily living.
Alzheimer’s disease is named after Dr. Alois Alzheimer. In 1906, Dr. Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. Her symptoms included memory loss, language problems, and unpredictable behavior. After she died, he examined her brain and found many abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary tangles). Plaques and tangles in the brain are two of the main features of Alzheimer’s disease. The third is the loss of connections between nerve cells (neurons) in the brain.
HOW TO HELP
To contribute toward research to end Alzheimer’s, send donations to:
Kentucky Alzheimer’s Association
465 E. High St., Ste. 100
Lexington, KY 40507