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 Parkinson’s Disease: Strong Marriages Suffer More

 

 


Provider’s blog, ProviderNation (providernation.wordpress.com), lives online, of course, but we thought this compelling and poignant piece from Vivian Tellis-Nayak, PhD, was worth every drop of ink. This is the second installment of a new guest post about Tellis-Nayak’s very personal struggle with Parkinson’s disease (PD).
 
Paradoxically, the more solid a marital bond, the higher the toll PD exacts. I have seen firsthand what it takes for a wife to care for an ailing husband. Her burden gets heavier as I depend on her more and more in matters of personal care. Mary plans, makes appointments, and drives me 108 miles to and fro for regular visits with my neurologist, a godsend, whom she selected after much research.

She buys and dispenses the six daily doses of 12 different meds.

She fights pitched battles with insu-rance companies and Medicare. She has never missed a deadline for documentation.

Meanwhile, I gradually withdraw, by PD orders, from doing household chores, thereby increasing her share of it. And all this, mind you, while she pursues a professional career with heavy travel demands.

The Breaking Point

There are times when you catch a glimpse of her as overwhelmed, irritated, and chafing under her cross that weighs heavier each day. Two weeks ago, I watched her inching to the edge. She was out early running errands, she returned with a heavy load of groceries. Not letting me exert, she put away the groceries without help.
 
The next hour we were speeding down U.S. 90, Mary at the wheel and grandkids in tow, for an obligatory get-together with the in-laws living three hours away in Indiana.
 
When you are at the ripe end of your sixties, you do not brim over with youthful stamina. So, by day’s end, Mary was tense and her dander up. She clenched her fist, and with righteous anger cursed PD. “Damn you!” she said hotly, “Why have you laid this cross on me? Then she turned toward me and with unfocussed resentment said, “I am ready to break. I admire your courage. But I am sinking.” Then she cried. A bit later, she apologized.
 
Being philosophically inclined, I sought a rational answer. Why, I puzzled, has nature endowed wives and mothers with only two, not four, hands?
 
I have never seen it, but friends have confirmed my suspicion: PD has brought Mary to tears, shed privately and in silence as she sees me slide in health, speech, and function.
 
On occasion, when she is certain I won’t take hurt, she lets me peek into her soul, ruffled by the anticipation of what PD holds in store for her: A longer life without her soul mate of 43 years (and counting), without the partner who took delight in her success, and without the handyman who took on every problem in the house with a bravado that exceeded his skill.
 
I am blessed, indeed, that she cares for me exquisitely, even to a fault. But I too grieve in silence that the gods gave her youth, but only at the price of being a caregiver half her married life, and a longer, lonely widowhood.
 
I am put off at God, as I am with Mother Nature. Why do so many long-suffering, deserving wives and mothers never attain canonical sainthood?

Angels And Superiors

PD has brought me other insights and revelations. Receiving good care from your spouse, I have rightly concluded, is not entirely an unmixed blessing, especially if your consort is well-schooled, smart, Irish, and an ex-nun. A hired caregiver, like Kathleen, who has helped us out, would take it in stride and humor my quirks and peccadilloes, if I had any.
 
Not unlike my angel guardian, Kathleen coaxes me to stick to my regimen, but she understands when I don’t. When she is on duty, I take shortcuts, I (metaphorically) let my hair down (I am as bald as a new laid egg), and I flirt with minor temptations that add fun to life, especially when you give in to them.
When the angel goes off duty, Mother Superior Mary comes aboard, ruler in hand. Instantly, the script changes, and I assume a role akin to Mary’s Little Lamb.
 
Through the thick and thin of family life, Mary has learned all there is about me. She knows my minor vices and she has steered me away from temptations that lead to the seven capital sins.
 
She is well versed in the clever games spouses play in marital power tugs. So, I weigh the odds when I want her help. Every time I call out for help, a handy app in her mind instantly analyzes the tenor, tone, and tempo of my petition and determines if my plea was a moan of self-pity, a ruse to get attention, or a genuine plea for help.
 
The next second she is by my side with a response suited for the occasion—lending me a caring and helping hand, or admonishing me on a familiar theme: how “growing old is not the same as growing up.”

Treasure Of Human Life

In ways both symbolic and real, the rhythm of family life adjusts to the demands PD makes. Our son has not found how to cope with the way his dad has declined so quickly and visibly in function and gait. Our two grandkids have never seen their grandpa in his pre-PD glory. They wonder how I can talk incoherently as a toddler, demand as much attention as does a baby, and still receive the care and respect due to a family antique. Grandma gets more than her share of hugs and smudgy kisses, as I wait for the leftovers. To the kids, grandma is fantasy come true—Fairy Godmother and Mrs. Santa Claus wrapped in one, while grandpapa serves as the clandestine source of candy—the forbidden fruit banned by overcautious, thoroughly mistaken parents.
 
As PD has ordained, I am no longer the wise Solomon who set the direction for the family and had the final word. Now, my kind family spares me the exertion of planning family events, vacations, and travel. Still, it stings when they forget to tell me their decision and I learn of it from the neighbor.
 
I have to face it, even in the family I have fallen in status, although not from grace. When preparing for a road trip or for a picnic, Mary anticipates the needs of each and gets everything ready for all.
 
In sum, PD has not let up and is still hell-bent on bringing me to my knees. In ways vile and vicious, it has attempted to crumple my professional life and to crush my personal world.
 
It has knocked me off pedestals and has brought tears, pain, and sorrow to those dearest to me.
This meanest of teachers has made me walk through the dark tunnel of depression and the valley of defeat and shame. This searing internship, however, has taught me to cherish the gift of human life—the indomitable human spirit that can lift you from the ashes, the power of love that can rescue you from misery, and the healing bonds of family and friends—angels that can make you whole again.
 
Vivian Tellis-Nayak, PhD, is senior research advisor at National Research Corp., Lincoln, Neb. He has been a university professor, whose scholarly work has been published in national and international professional journals. He has conducted research in the United States and abroad, and his major findings have reached a wider public through his writings in trade magazines. Tellis-Nyak can be contacted at vtellisn@gmail.com.
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