Can't Stop Falling, A Caregiver's Love Story

By W C Stephenson

“Your wife will go within six years. Forget yourself and learn to be a caregiver,” the neurologist said after diagnosing my wife’s mystery disease as PSP, Progressive Supernuclear Palsy--a rare version of Parkinson’s. For five years we’d been wondering what was wrong, only to learn we must keep battling the unknown. This book chronicles how my Marilyn’s world crumbled and what kept her from giving up. Shortly after getting married, we’d traded a conventional lifestyle for living off-the-grid on a remote Colorado mountain top. This adventure caused financial lows and emotional and spiritual highs, knitting us into a solid unit lasting 25 years. The next eight challenged it. When physicians could only prescribe anxiety pills, she replied, “I am NOT depressed!” She and I had just retired and moved into our dream house in the mountains of North Carolina and were still the happiest couple in America. I knew nothing about caregiving except that I was temperamentally unfit for it, being used to a lifetime of staying active outdoors. At first I handled her repeated falls and gradual decline, but eventually admitted to needing help--but lacked finances and couldn’t find local, state, or federal assistance. Being a writer, keeping a daily journal helped keep me sane. I wrote about small things like adding hand grips on walls or buying baby monitors to let me know when she’d fallen upstairs. I recounted bigger challenges like nursing homes or hospice or not giving in to doubt, despair and denial. I rehashed anger over friends not there to help. I told of terrible grief during and after Marilyn’s death—how her faith kept her strong but mine couldn’t. Friends encouraged me to publish the journal, saying other caregivers could profit by learning what did or didn’t work for us. Nowadays everybody knows at least one caregiver; America has over forty-three million in need of help. Most start off as I did, not knowing what to do. Ignorance added to loneliness and grief always produces denial and despair. For those who have enough money or can detach emotionally, assisted living and nursing homes can provide a solution: let someone else take responsibility. Others have to choose my path of caring for their loved ones at home. “How to” books provide some answers to practical problems, but don’t help submerged emotional and spiritual needs. I wanted this book to address these deeper needs by dramatizing two ordinary people struggling to keep love strong. One day I realized the work’s subtitle, “a caregiver’s love story” wasn’t just a tag-on. The memoir had to tell the beginning of our life adventure, not just its end, because that’s what made our love truly unconditional. I went back to writing, this time about the first half of the marriage that friends called the most unusual they’d known. Now readers who enjoy creative prose can live vicariously through our ordeal. It marries a narrative of our unusual, happy, and exciting early life adventures to the original journal about later difficult caregiving times. The chapters move back and forth from Colorado mountain-top homesteading or farming in Wisconsin to finding a little-known “Money Follows the Person” federal program to replace nursing home with living at home. After Marilyn’s decline took a dive, our perfect union started coming unglued. Her conventional religious faith stayed strong, but my unconventional spirituality didn’t. Reading this memoir, friends get surprised when I tell them my great anger subsided the morning I held my love tightly in my arms and whispered it was time for her to go. “You’ll be in a better place; I’ll soon be with you,” I said, not knowing if I believed it. Faith surfaced as I accepted the inevitable and learned how to help her die as she wished. The words “love story” in the subtitle don’t begin to explain the complexity or depth of what we went through. The work itself does, and I hope will help other caregivers live through their grief.

• Language: English
• Publisher: W C Stephenson
• Release date: Mar 31, 2019
• ISBN: 9780463810743

W C Stephenson

W C Stephenson used to teach nineteenth century English literature at the University of Texas at Austin and environmental literature and writing at Northland College in Wisconsin. He has one book published by Harcourt Brace Jovanovich, The Inward Journey, and numerous scholarly articles in national and international journals as well as popular writings on environmental subjects. He now writes novels and poetry, edits, and serves as Writer-in-Residence at Tubac’s Lowe House Project. Samples of his recent writings can be found at his e-mail site in Writing.com.

Book preview

Can’t Stop Falling

A Caregiver’s Love Story

by W C Stephenson

And because I loved this life, I know I will love the next as well.

Published by W C Stephenson at Smashwords

Copyright 2019 W C Stephenson

Dedication

For Marilyn, who would have wanted me to share our ordeals in order to help others through their dark times. I also wish to dedicate it to America’s forty-three million unpaid caregivers.

Subject of Work

A poignant, powerful, and romantic memoir to inspire people helping loved ones suffer or die with dignity. The work follows the couple’s homesteading off the grid adventure in the Colorado mountains to when she contracts a rare neurological disease that tests their powers of endurance. Left to his own resources, he has to learn how and where to seek help—and then lead his loved one through the final stages of decline.

Reader Appreciation

Thank you for downloading this e-book. It remains the copyrighted property of the author, and may not be redistributed for commercial or noncommercial purposes. If you enjoyed this book, please encourage your friends to download their own copy from their favorite authorized retailer. Also, the author would appreciate your review at your favorite retailer. This book is available in print at most online retailers.

TABLE OF CONTENTS

Preface

Chapter 1—The Universe Speaks to Kindred Souls

Chapter 2—Falling from the Moving Van

Chapter 3—Wall Street and Wild West in the Rockies

Chapter 4—Trouble Brewing

Chapter 5—When it Snows it Blows

Chapter 6—Maybe Nothing’s Wrong After All?

Chapter 7—Dream Time Ends

Chapter 8—Which Kind of Parkinson’s?

Chapter 9—A Time to Wander

Chapter 10—Reviewing Realities and Fantasies

Chapter 11—Bears, Chairs, and Doors

Chapter 12—Learning the Dreaded Truth

Chapter 13—Back in the Saddle Again

Chapter 14—Good Helper but Bad Falls

Chapter 15—Weathering the Storm

Chapter 16—Life in the Nursing Home

Chapter 17—Coming Home

Chapter 18—Reviewing the Confusion

Chapter 19—Life Goes on as Usual

Chapter 20—Should We Leave Security?

Chapter 21—New and Old Homes

Chapter 22—New Home and Poor Helper

Chapter 23—Touching Home Base

Chapter 24—Mildred at Last

Chapter 25—The Waiting Game

Chapter 26—Those Angry Legs

Chapter 27—Come Dance with Me

Chapter 28—My Wonderful Mouser

Chapter 29—Words of Wisdom

Chapter 30—The Final Surrender

Chapter 31—Life Goes On

Chapter 32—Finale

About the Author

Other books by W C Stephenson

PREFACE

EVERYONE SAID MARILYN’S LIFE had been too good to be true. Doctors and strangers said the 65-year old looked 45. Aside from one mystery problem, she was in excellent health. She and I had just retired and moved into our dream house.

She never realized she was the prettiest woman in the room, and her quiet but cheerful demeanor won her over to females as well as men. She had everything she’d ever wanted: a husband who’d never cheated on her in their thirty years together, a sunny past, good present, hopeful future. Her children, and his, were stable, happy, and prospering. She was at peace with herself, the world, and God.

This book chronicles how her world crumbled, but also what kept her from giving up. I helped by learning to be a loving, if totally inexperienced, caregiver. In past centuries, people also contracted mysterious diseases that defied healing. The sick ones were treated with herbs and strange concoctions, but people watching over them never called themselves caregivers. Nowadays everybody knows at least one.

After friends convinced me to revise and publish the journal I’d kept during our difficult years, I feared the work could get boring. Memoirs are supposed to be exciting and fast paced, yet caregivers’ lives move at a snail’s pace. In order to keep things going, I decided to marry a narrative of our unusual, happy, and exciting life adventures to the original journal about the difficult caregiving experience. The chapters alternate: narrative, then journal. The narratives start with our marriage in 1978 and Colorado homesteading in the 1980s, then Wisconsin farm life in the early 1990s followed by a brief interlude in Arizona and longer stay in East Texas at the end of the century. They end up in North Carolina when we start suspecting something wrong, in 2006. The journal-inspired caregiving period stretches from 2006 to 2013. These alternating time periods merge toward the end of the book. Readers used to text flowing chronologically may have their patience tested by jumping back and forth in time, from narrative to journal, but I wanted to keep the happy and difficult times separated.

In this work, I don’t attempt to give advice, just tell what worked and didn’t work for us. For me the simple truth always speaks loudest. It tells what made our love strong enough to survive the grief of my loved one’s suffering and decline. In 2006 Marilyn appeared to be in perfect health but unseen things were happening. It took us years to find a neurologist who’d heard of Marilyn’s unusual disorder, and then he said nothing could be done. All too soon after that our world started moving rapidly toward its final end. Of course, physicians know more than caregivers, but because we live with our loved ones day by day, we often know things doctors can’t. And all of them rely heavily on our responses to questions. I hope this book will inspire other caregivers and give them a measure of hope.

Chapter One: The Universe Speaks to Kindred Souls

AFTER MARILYN’S MARRIAGE FELL APART and both parents died, in the late 1970s she packed to leave for Colorado with her two sons. A third son had preceded them as soon as he’d graduated from high school. She had no job, no prospects, and $500 in cash, plus three mouths to feed. They couldn’t stay with Paul; he now was married and jammed into a small apartment with an unfriendly cat. My marriage had also crumbled in the mid ‘70s, mainly because I’d lost my teaching job at the University of Texas in Austin during the famous UT Purge that eliminated all new assistant professors. I was in limbo and came back to my home state with my son Reed, miraculously having secured a job at the new Solar Energy Research Institute in Golden.

The officers at SERI didn’t know what to do with an ex-English teacher, but took a gamble, placing me in the public relations office. One sunny fall afternoon Joyce came rushing into my office. Bill, there’s the most beautiful new woman down in Placement. You’ve got to go see her. I’d been looking for the most beautiful woman for two years with no success. What I found took my breath away. I gathered courage to ask her for a date, and she accepted. I went back upstairs but knew I couldn’t wait until Saturday, so ran back downstairs to insist we make it for tomorrow, Wednesday.

Tomorrow came, with snow. After work I drove back to Boulder, 25 miles west of Golden, got ready for the big date, said goodbye to my roommate (and son) Reed, and headed back east on Highway 93 where car bumpers proclaim, I drive 93, pray for me. Halfway there a police car stopped me; road closed. I turned back to Boulder and found a country-to-market road that hopefully would get me to Golden. Miraculously my little ’78 Honda Accord plowed through drifts that should have closed that road also. We ate at Sims’ Landing and immediately fell in love.

I have ever been a romantic. Marilyn too. Two weeks after our first dinner date we spent a freezing December night together in a remote mountain cabin without heat. Then followed many months of being together daily at SERI, sneaking off during lunch to kiss. Friends warned us people were looking; we could get in trouble. Trouble? Nothing could keep us apart. All this is predictable for two relatively young people looking to start a new life. Before moving into my Boulder house, we decided our lives must remain permanently together.

I had been with other women during the dissolution of my first marriage, as had she with men, but our pasts meant nothing to us. Now we both somehow knew our future extended toward infinity. In a very short time, I asked her to marry me and she accepted. Once spring came, we sent out handmade cards inviting friends and family to come to a special party. No mention of what it was, but stating that it was so important they had to come, which they did. It started in the backyard of our small Boulder house. The boys were climbing a tree, and Marilyn and Bill were dressed casually, she barefoot. I was talking to my dad when the minister opened the side gate. Surprise! Marriage! we shouted and everyone gasped.

In those days, our lives were too full to need God, so we had rummaged through the phone book looking for someone to officiate. The Unitarian minister turned out to be very friendly and experienced. Before announcing our surprise, I told my father, who’d been raised a good New England Unitarian, that the minister was also one. My dad just shook his head. The marriage that God put together lasted another thirty-four years, and not surprisingly, we finally came to stop distrusting this loving God.

The following year we hired someone to raise the roof of our modest bungalow (the cheapest house I could find in Boulder, a famous party town) and add an attractive second floor bedroom and living area on top. For a while her youngest son lived below, and later, mine. Meanwhile, Marilyn and I drove daily to our work place in Golden and went camping in the mountains on the weekends.

We loved Boulder, where we’d almost immediately found many new party friends, but she had moved to Colorado to be up in the mountains, not down on the plains. That suited me perfectly. We couldn’t be too far away from SERI, and again Joyce came to our aid. She and Larry had moved to Idaho Springs, a small town about thirty miles west of Denver via I-40. We scouted around and soon found a comfortable apartment above the town’s donut shop. Every morning we’d wake smelling donuts, and most every weekend the four of us would dance until closing time at the small bar in town.

On one of our weekend adventure trips we found a beautiful wild area only ten miles above Idaho Springs that four-wheelers used for elk hunting. A few years back a gutsy developer had purchased several hundred acres and subdivided them into approximately five acre building sites, following the original mining claim surveys of the nineteenth century. This area, unlike Central City on the east side of Bald Mountain, had never produced gold, so our west side remained untouched and verdant instead of pocked with dangerous mine dumps. We bought the first claim we saw but later traded it for a much better one called the Wall Street.

The spring after purchasing Wall Street in 1980, we set up camp on its southerly point. Thirteen miles south loomed Mt. Evans--the mountain we called Lap of the Gods because of its cirque on top. We slept in a small camper trailer roped to a pine tree so winds couldn’t carry it away and cooked our dinners under a twenty-by-twenty tarp stretched outside. Well, Marilyn cooked, using cast iron pots over the firepit, and I ate. And month after month I used my sharp draw knife to scrape bark off the sixty logs that might eventually become a house. I also trucked in an assortment of building materials, most of which were salvaged. Marilyn joked about writing a book called In and Out the Dumpster, since that was where I spent a lot of my time. This was necessary because we’d left our first marriages with next to nothing and were living hand-to-mouth, despite two modest salaries at SERI. We knew no bank would finance a house up in our remote area, so put everything we had into building materials and gas for the International Harvester Scout. And we kept redrawing plans for the cabin and big house.

The small log cabin took a busy summer to build, with a lot of help from friends down in Boulder. Another friend came out from Minnesota to help me put in some large south-facing windows and a stovepipe for the new wood cook stove. One day other friends who lived down below us in York Gulch asked us to pick up a Newfoundland pup they’d heard about, but by the time we got back we’d claimed her (fortunately they forgave us). It didn’t take long for our wonderful Cuzi to rule the top of our mountain, although the mountain lion half way up Bald Mountain disagreed. Our life was good, so good. We didn’t have electricity; never would get it, because our area was too remote to have it brought in. But we did have water after hiring a water witch to locate a supply less than 200 feet down and installing a water tank in the new cabin. And eventually we had a propane Servel refrigerator, plus, wonder of wonders, a year later, a phone. All the modern conveniences.

Eight other families lived up in York Gulch. We were all early middle-aged and married except for Al, whose wife left him half-way through his building project (she couldn’t take the lack of running water or indoor toilets). We Gulchers met monthly at Nancy's and Phil’s to discuss important matters: diesel or gas generators; wind turbines or solar panels; double or triple pane windows; how to fund a firehouse, and most important, how to talk county commissioners into scraping and plowing our seven-mile road up the Gulch. That’ll be a cold day in hell, they kept telling us…and meant it. That might have been the year the electricity company quoted us a price of $20,000 per household to bring electricity up the gulch.

During one of our homeowner meetings we fantasized about how wonderful it would be if someone could invent a hand-held phone that we could use to contact each other (we lived miles apart), especially for emergencies or help with plowing or building. We knew Ma Bell would never come up, but then she surprised us and did! The lines were laid underground—no unsightly telephone poles—and somehow, they carried their own electricity to power the phones. We thought we’d finally joined the twentieth century.

Six of us had plows on our vehicles and took turns clearing the main dirt road plus our feeder roads. My feeder was just under a mile but felt like ten come 2:00 am after six hours of continuous plowing. Marilyn never came with me since a big stretch featured a sloped drop-off of two hundred feet. Cuzi wasn’t afraid to come along. One time I even coaxed Pinecone, our classic tabby cat, to ride in the back seat…a ride he declined repeating.

Chapter Two: Falling from the Moving Van

A QUARTER OF A CENTURY after our marriage and solar energy days, we moved to Western North Carolina to build our retirement dream home in stages during the summers from 2002 to 2004. I was too busy digging, sawing, and hammering to notice small differences in this woman I’d loved through all of our adventures. Maybe she was slowing down a bit–but weren’t we all? I only knew that she was starting to suffer, and no doctor could be found to help identify, let alone alleviate, her anxiety.

We were too busy for poetry, reading, or even relaxing. Later, after the kitchen cabinets were finally built and installed and the floor tiles placed, we moved in. I had time to review what happened after our move from Texas at the turn of the century.

When we’d first started visiting western North Carolina we’d looked for an old farm house to remodel. We particularly liked the Tusquittee Valley but it had nothing for sale, so finally decided in 2001 to build...if only we could find the right spot. On the very last day of that summer’s visit we found a spectacular hillside site up a dead-end street inside the small town of Hayesville--the classic old-fashioned town. Back in Texas we thought about Lot #7 for two months, then called Ray to make an offer—which he accepted and even agreed to finance. Then we spent the winter drawing house plans to fit the lot.

Once the time finally came to move our stuff to its temporary storing place in North Carolina, we tried to leave our old possessions behind, tired of hauling the same junk around: couches, chairs, antique tables that should have been sold in our Arizona store, Bears, Chairs, and Doors, plus hundreds of books, cartons of dishes, pots, and pans. But we just couldn’t dump everything. So we packed up our last U-Haul trailer, the biggest ever, and headed north.

Unfortunately, this moving trailer had steps too high for safe entry and exit, a feature that could have been responsible for Marilyn’s future problems. While trying to get out, on two occasions she fell, once hitting her head and losing consciousness for a few seconds. I can still see the falls in slow motion: to my knowledge, the first falls in her life, although I’m sure she must have slipped from her tall Tennessee Walker once or twice back in her pre-teens

August, 2004

The year before our move to North Carolina we bought a twenty-year old Airstream, then had to buy a vehicle to haul it, a ’94 GMC blue Suburban. Ten thousand was too much for something we really didn’t really need, but Marilyn wanted it, and we came to need it to live in once we started building our house. On the Airstream’s maiden voyage, it became the Silver Bullet. Less than twenty feet long, it traveled smoothly. That was important, since from the start I’d worried about driving it, parking it, and setting it up.

After arriving in North Carolina, we had to find the perfect camping area. By this time, I knew it had to be a civilized campsite, since it was just a place to live in during the summer, not a base camp for exploring, like in the good old pop-up days. This place wasn’t hard to find, across the state line in Hiawassee, Georgia. Not a typical camping area, but beautiful and well groomed, with dozens of rest rooms and showers that anyone would love. Our first visit convinced me the camper wasn’t such a bad investment after all. Once I got its hoses and lines hooked up, I disconnected to drive the Suburban nine miles to Hayesville to work on the house.

Our schedule became routine. Before I’d leave to clear the land, we’d eat a hearty breakfast at the Georgia Mountain Diner. When I’d return, she’d be outside preparing our supper or sitting with her feet propped up on the picnic table. When it rained her feet stuck outside the canopy, dripping rainwater. Sitting there surveying the distant mountains, she couldn’t stop smiling. This image of my wonderfully happy wife will stick with me forever.

I worked hard but didn’t keep long hours. We’d parked the trailer half way up the hill where bluebirds flitted on the grassy slope stretching down to the lake. In the spot below was a medium-sized RV occupied by a pleasant middle-aged couple who’d predictably come up from Florida. It didn’t take Marilyn long to meet them, and soon we ate together, unfortunately not around a campfire since fires were outlawed in this upper camping area.

His name was Bruce, and I never trusted him. Too