The Burdens of Being a Parkinson’s Caregiver: A Book-Review Essay by Peter G. Beidler

Barbara Sheklin Davis, Advice from a Parkinson’s Wife: Twenty Lessons Learned the Hard Way.
Colorado Springs, CO: Parker Hayden Media, 2019. xi + 101 pp.

IN THEIR 2020 BOOK Ending Parkinson’s Disease, Drs. Dorsey, et al., wisely remind us that Parkinson’s is a monumentally debilitating disease not only for the unlucky man or woman with the disease, but also for the unlucky man or woman whose lot it becomes to take care of a parent or spouse with the disease: “Not only is Parkinson’s the fastest-growing neurological condition on the planet, but it is also among the most disabling. Individuals with Parkinson’s disease suffer.  And so do their caregivers” (p. 116).  

A woman’s burden

Drs. Dorsey, et al., tell about a man named Dr. Bob Dein whose wife had Parkinson’s but wanted to keep it a secret from others. They managed pretty well for a decade, but then Bob’s wife started having hallucinations and began imagining that Bob was having affairs with other women. Seeing no way out of his troubles, Bob made detailed plans to drown himself by taking his boat far out into the Gulf of Mexico, tying batteries to his ankles, and slipping off the boat (pp. 116–17). Just before he was going to put his plan in motion, however, his wife had a psychotic episode and was placed in a memory care institution, where she eventually died. Bob scrapped his plan to drown himself.

Because more men than women get Parkinson’s disease, and because men more than women tend to avoid the day-to-day, hands-on requirements of long-term caregiving, most caregivers are women.  Caregiving is tough work, no matter who has to do it.  Drs. Dorsey, et al., report that in a British survey almost half of caregivers reported that their health had suffered because of their caregiving work: “Almost half had elevated depression scores, and two-thirds felt that their social lives had suffered. In the United States, older people who take care of another adult are sixty percent more likely to die sooner than non-caregivers. Many contemplate suicide” (p. 117).

When she published Advice from a Parkinson’s Wife, Barbara Sheklin Davis was seventy-five years old. Her husband was seventy-seven. They had been married for fifty-five years. Twenty years earlier, her husband had been diagnosed with Parkinson’s disease.  As the years went on, Barbara Davis found herself having gradually to shift from being her husband’s wife, partner, and companion to being his parent, nurse, and caregiver. It was not a sudden shift in function.  There is nothing sudden about Parkinson’s except maybe the shock of the initial diagnosis and, later, the falls. Once a patient shows the first physical symptom of the disease—often a slight tremor—Parkinson’s advances so slowly that even the patients and their families scarcely notice the changes.  The changes continue, however, steadily, unstoppably, and irreversibly.

Davis did not suddenly become her husband’s caregiver on the day he was diagnosed. It was a job that grew in direct proportion to her husband’s growing disability. As her husband slowly grew worse, her job slowly grew more demanding and more overwhelming.

It is easy to say that Davis had no training in how to be what she calls a “Parkinson’s wife,” but that is not quite accurate. She had mothered their three children from helpless infancy to adulthood. She had had plenty of experience with changing diapers, preparing meals, spoon-feeding sloppy eaters, cleaning spilled food from tablecloths and floors, being ever vigilant lest her children, totally unaware of the dangers of getting lost or getting run down by trucks, wander off. She had had plenty of experience helping them stand up when they fell down, washing and bandaging their bleeding knees, and comforting them when they had  frightening dreams. She had had plenty of experience encouraging them to stop clinging to her all the time, allowing them to watch stupid television programs so that she could steal a few moments of private time. She had had plenty of experience driving irresponsible dependents from one place to another, hiding the car keys so they could not drive off and kill themselves or others.  

But it was all different this time. Instead of the joy of watching her babies gain skill and confidence and education and independence, she had the heartbreak of watching as her husband spiraled slowly downward into confusion, childish dependence, and infancy.

We all realize, of course, that if you know one person with Parkinson’s you know one person with Parkinson’s. What is true for that one person may not—or indeed may—be true for the next person.  Parkinson’s is often referred to as a “neurodegenerative disease,” but it attacks different people in slightly different parts of the brain. It is often referred to as a “movement disorder,” but patients exhibit their own more or less distinctive movement variations. Some have shaky limbs, some don’t have even a tremor. They all march, at slightly different tempos, to slightly different drummers. Some scarcely move at all but instead experience something called “freezing of gait.”  Some feel intense cramps in their legs and feet, some feel only numbness in their legs and feet. Many fall a lot, some not so often. For some the Parkinson’s goes hand-in-hand with dementia, for others it does not.  Davis estimates that fifty to eighty percent of Parkinson’s patients will develop dementia: “It takes about ten years from the onset of the disease for dementia to develop, but when it comes, it brings with it a burden that is far more difficult for the caregiver to bear than the physical challenge of Parkinson’s” (“Introduction,” p. x).

Readers of Advice from a Parkinson’s Wife should bear in mind that Davis’s husband had not merely Parkinson’s, but Parkinson’s with dementia. Davis’s book might have been more appropriately entitled, Advice from the Wife of a Man with Parkinson’s and Dementia. It is clear that what troubles her most are the behaviors associated with dementia: “My husband now lives in a world in which things don’t always make sense to him, where strange people and animals appear to him, where anything could happen” (p. 11). He is forgetful and confused:  One day he left for a dentist appointment and an hour later, the dentist’s office called to ask where he was. Petrified, I stood deciding whom to call (police? hospital? 911?) when I heard the garage door open. He came in and told me he had gotten lost. The EZ-pass bill that came later in the week showed that he had gotten on the thruway four times, driving in circles until he found his way home (p. 15).

Davis’s husband had frightening dreams: “Some years ago my husband began to have terrifying nightmares, and reacted to them with violent physicality: screaming, sometimes falling out of the bed, and other times hitting and punching me” (p. 51).  Davis wrote her little book specifically to help other women who find themselves cast in the role of
caregiver for a husband with Parkinson’s and dementia.  Davis reports that “family caregiving is still primarily gender-based. Women are the major providers of long-term care. Two-thirds of caregivers are female, and it is estimated that they spend as much as fifty percent more time providing care than their male counterparts. Men and women deal differently with caregiving responsibilities. Men tend to feel responsible for shouldering the financial burdens associated with long-term care and to work more or longer to meet these burdens. Women tend to stay home to provide the hands-on care. As result, women experience greater physical and mental strain and caregiver stress, exacerbated by social isolation and the reduction or loss of income from employment” (“Introduction,” p. ix).

It’s no fairy tale

Davis organizes her message as a series of twenty “lessons” that she had to learn “the hard way”—pretty much on her own. The lesson of Chapter 13, for example, is that Parkinson’s caregivers are so overwhelmed with work that they can’t think of taking a vacation: “You not only become a parent to your partner, but you become a single parent; not only the keeper of the house but the handyman, the decision maker, the cook, the cleaner, the nurse, the attendant.  […] You have to blow the snow, wash the car, change the light bulbs, do the laundry and the dishes. […] You feel like Cinderella, but it’s no fairy tale” (p. 56).  

The lesson in Chapter 15 is that Parkinson’s caregivers will be overwhelmed by the sheer impossibility of doing all that they have to do. In giving examples from her own life as a Parkinson’s wife, Davis spares no details:  He can no longer dress himself. He can’t go to the bathroom by himself. He can’t cut his food. He can’t sit down in a chair. He can’t get up from a chair. He can feed himself sometimes, but not others. He can’t sit up straight. He is at constant risk for falling. But he thinks he can do all these things; he denies any that he can’t. And sometimes he can. I never know. He doesn’t know what he is doing most of the time. But some of the time he does. And of course he can always tell me how to do things, still criticize, still correct and direct. He still wants to be in charge. He is insistent on getting his way; he gets stubborn, sometimes downright nasty. How much is him and how much is the disease? How can a man with a PhD in chemistry not know how to pull down his diaper? How can he not know how to turn off a faucet, put on his slippers, turn the page in a magazine? Why do I have to watch him every second of every minute? Every minute of every hour? The stress is unbearable. (pp. 64–65)

The wife of a man with Parkinson’s will no doubt find the book interesting in a morbid kind of way, and useful in a grim sort of way. She will probably find some comfort in realizing that she is not the only wife who has the discouraging task of giving comfort to a man whom she loves but who has an incurable disease that alters his personality so much that she scarcely recognizes him.

I suggest that Advice from a Parkinson’s Wife should have a wider audience than the wives of men with Parkinson’s. It should also be read by men with Parkinson’s soon after they are diagnosed. They will not find the book to be amusing or uplifting or encouraging. They will not enjoy seeing an advance-glance at the man they may perhaps be destined to become as their disease continues to do its devastating work.

If the future is so bleak, would it be better not to know what probably lies ahead? Would be better to hold onto the illusion that a cure is “just around the corner”? For some people, perhaps so. I can think, however, of three reasons why a married man with Parkinson’s should consider reading this book.

Why read this book?

First, reading Advice from a Parkinson’s Wife will convince him that he should begin immediately to find ways to show his wife that he appreciates all that she has done for him in the past and all that she will do for him in the coming years. Reading Davis’s book will help him to seek out ways to thank her, perhaps even apologize for the anguish she may encounter as she strives to be a good caregiver in the troublesome times that lie ahead. As they both prepare for those grim years, he can do some really nice things for her—a bouquet of roses delivered a week before her birthday, a French-toast breakfast in bed to balance on her knees—to compensate for all the nice things she will do for him in the coming years. He can find out what is on her bucket list and begin helping her to tick them off: a red Corvette; a week’s vacation in Sedona for her and her college roommates; tuition to a wood-carving course at the local YMCA. He can do things with her while they can both still enjoy them: that trip to Hawaii to splurge on a noisy helicopter flight over a live volcano on the Big Island; that flight to London to buy same-day-discount theater tickets at the half-price kiosk on Leicester Square; that family cruise through the Panama Canal.

Second, he can work with her to do some advance planning. If he does all the income tax preparation, he can find a way to include her now so she can take over when she needs to. He can go through that old file cabinet in the attic and toss out most of it—those old report cards, old term papers, and so on—but holding on, of course, to the love letters she sent him when he was in the United States Air Force. He can help her to figure out whether it is time to consider selling this big
old house on three shaggy acres that require so much maintenance. He can see if she thinks it is time to move closer to the kids, or to a retirement community that has ready access to an infirmary or that has provision for expert nursing care if one of them should need it.

Third, and most important, he can find a way to initiate discussions about end of life issues. He can read to his wife the long quotation just above—the one that starts, “He can no longer dress himself,” and ends, “The stress is unbearable?”

He can tell his wife that he has no desire whatever to live long enough give her reason to write, or even think, a paragraph like that about him.

He can tell her that he has signed advance directives indicating that in case of accident or illness, he does not want to have his life extended by artificial, invasive, or mechanical means.

He can tell her that the last thing he wants is to cause his wife stress, that she has a right to a relaxing, stress-free retirement and old age.

He can tell her that he absolutely does not want her to feel obligated to spend her old age stressfully wondering about what crazy thing her useless and demented old husband will do next.

He can assure her that, while the wives of ancient Egyptian kings knew that they would be executed when their husbands died so they could continue to serve him on his death-journey, he wants his wife to live on after his death and find her own path to peace and happiness, disencumbered of the need to look after him in his hopelessly irreversible physical and mental decline.

He can tell her that though they had agreed in their marriage vows to help each other “in sickness and in health, till death do us part,” he figured that the man she had married had died when he ceased he to be able to think clearly or take care of himself independently.

He can tell her that “the strange man in that body will no longer be me. You will have paid off that marriage vow to me when I became a demented stranger to you.”

He can tell her that when he gets to the state where Davis’s husband was, she should let him die or put him in a nursing home and get on with her own life.

He can tell her that he does not want her to have to ask questions like Davis’s: “What about having a social life with family and friends when your husband is falling off his chair and slobbering all over himself?” (p. 61).

He can tell her that he hates imagining himself in scenes like that, but hates even more imagining her wasting her life taking care of such a stranger.

He can tell her that he does not want to live so long that she finds herself asking questions like these that Davis asks: “What happened to my loving, intelligent, sophisticated, talented spouse? Who can no longer read a book or a magazine, follow a
conversation, watch a television program. Who can’t walk without assistance, get up from a chair, follow simple directions, feed himself” (p. 69).

He can tell her that he does not expect or desire her to spend every minute worrying about what mess her helpless husband with his incurable disease is making or getting into.

He can tell her that he would far prefer that his timely departure was the occasion for her smiles of relief and her warm cuddly memories of his good years, than that his continued existence was the occasion for her screams of anguish: “I want to scream when I dress my husband and half an hour later, he takes his clothes off. Or when I change his diaper and fifteen minutes later he has a bowel movement.  I want to scream when he wakes me up four nights in a row at 5:00 a.m. And I want to scream when he decides to try to take a shower when I dash out to the ATM” (p. 78).

He can find books and articles for her to read that will help convince her that he is serious about not wanting to live to experience the extreme physical and mental limitations of advanced Parkinson’s or dementia.

He can let her know that he has thought hard about these end of life issues and that quality of life is way more important than longevity, especially since his longevity would come at the expense of his wife’s quality of life.

He can find a way to let her know that he does not want to behave like a certain ex-president who selfishly refused to make a dignified exit when it was time for him to fade away. He wants to preside over a more generous and dignified transfer of power, find a less selfish path home.

Together they can find out what the laws in their state say about death with dignity. If they don’t like the laws in the state they are living in, they can consider moving to a different state, or talk to the politicians of their state about about modernizing the state’s end of life laws. Or they can talk to their doctor about their intentions and see what she suggests.  They can be sure that they will not be the first to ask the doctor about what their end of life options are, or to let her know what their preferences are.

“Parkinson’s will make you confront issues you never thought you would have to deal with,” Davis says, “including issues of life and death” (p. 68).  Verily.

About Parkinson Pete

After teaching English for forty years at Lehigh University in Bethlehem, Pennsylvania, Peter G.Beidler moved to Seattle in 2006. Not long after he retired, he was diagnosed with Parkinson’s disease. He has volunteered frequently over the years since then at Northwest Parkinson’s Foundation (NWPF). He and his wife Anne have generously contributed most of the books that constitute the NWPF’s lending library. Pete has published many insightful reviews of books about Parkinson’s. He has published two important books about the disease:  Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books about Parkinson’s Disease (2018) and Parkinson Pete on Living and Dying with Parkinson’s Disease (2020). Copies of both books are inexpensively available from Amazon.

Published here for the first time is his review of a book about the difficulties faced by the caregiving relatives of people who have Parkinson’s.