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Beth's Story: A Caregiver's Diary

Time has a way of distilling pain, rendering it palatable and precious, like fine wine.

In my mind I keep returning to my father's hands, a fine elegance that matched his patrician intellect, hands that toward the end would drift down to his chest in some morphine-induced, slow-motion choreography of a life unencumbered by spinal cancer.

And to my mother's hands, the source of her once-phenomenal power as a concert pianist, hands that wound up paralyzed appendages as Lou Gehrig's disease became her disease, along with an Alzheimer's-like dementia.

Memories, like dreams, fade in and out; yet it is the love that always remains. My parents, Mel and Elaine Witrogen, were larger than life to me, pillars of their community in Wichita, Kansas. They devoted their lives to the public interest, not self-interest; they helped found the local United Way, raised tens of millions for medical and cultural centers, ushered Wichita into the state university system and volunteered on civic boards for decades. They raised two daughters and sponsored refugee families.

My father was the family's mind, the philosopher and counselor; my mother its heart, the artist and friend. Although Dad had battled a rare but nonmetastasizing form of cancer for 25 years, my mother had never been sick a day in her life. The alarming news of her illness, that it was not arthritis but in fact Lou Gehrig's disease with an accompanying Alzheimer's-type dementia, came from out of a cruel nowhere one September day in 1991. It came at the same time that my father was beginning to realize -- but not let on -- that there would be no more treatments for the rare sacral tumor that first appeared in 1967, and had been recurring with frightening regularity since 1985.

How can I forget the shock of seeing my sweet mother -- of smelling my mother -- during neurology tests at the University of California-San Francisco, her unwashed underwear safety -- pinned together, her once-full body so atrophied that skin was beginning to hang from the bones.

Or the first time my parents' mortality hit home. This is how I watched my father go to work the day before my mother turned 70, Halloween 1991, after she almost set herself on fire because she was too weak to light a match properly: After dressing he got down on hands and knees, and in an expensive three-piece suit and silk tie crawled to the landing. Then he sat and, stair by painful stair, hoisted his once-athletic body up and down, panting and grunting until he reached the bottom 10 minutes later, crumpled in a heap of frustration and sweat, yelling at my mother who had wandered off, forgetting to bring his walker.

Each week there was a new crisis as both diseases plowed a course of destruction. And so for the next year and a half I went home every six to eight weeks to take care of them.

The homecoming

The night I arrived home in December 1991, my mother wanted me to sleep next to her; Dad was downstairs in a hospital bed, no longer able to negotiate the condo's three levels. She started choking and I didn't know how to help. My Aunt Sam, Dad's sister, rushed in to show me. She had quit her job in Oklahoma City, thinking she could care for them until the end. But the emotional and physical distress was so consuming that soon she, full of impossible guilt, had to return home. I barely slept after that, worrying that my mother would choke to death and listening to my father's cries of pain.

My father had always dealt with his cancer by focusing on life. He insisted, "I am more than the sum of my illnesses." Even bedridden, in his mind he was a whole human being, with as much value and dignity as ever. I thought of both of my parents that way.

So it was a blow to discover, because my father hadn't told me, that in six weeks I had been gone my mother's torso had warped into an S shape, her head falling onto her chest, belly protruding to compensate for wasting muscles. The dementia was also more pressing: She would endlessly fixate on the mail or her resume, or prod my father about why her hands could no longer dance over the piano keys. Yet her spirit was ever-present; it poured out onto the Steinway, into her room and into our hearts.

Each trip home I set up routines to keep their lives close to what they had been, as I learned the skills needed to keep pace with their deterioration. My parents had always been meticulously organized, having lived so long with the spectre of cancer, so I assumed all their legal and financial affairs were in order. It was an assumption I would live to regret, as their lives careened out of control and, with them, all my hopes and expectations.

Yet every time I went home, no matter what the problems were -- and they were always medical as well as housing and financial -- just being together was enough; we didn't dwell on the future. Mom wanted us to be at the piano playing and singing, and I took her on errands to let Dad rest. They were determined to live normally, and for the most part, that's what the outside world thought they were doing.

The separation

Early in 1992 Dad's pain became so severe that he decided to have a morphine line implanted in his chest because oral narcotics had lost their effectiveness. He had resisted this maneuver for seven years because of a fear of addiction and of losing rationality. But if he was going to continue functioning, and mostly if he was going to stay alive so that Mother would not be alone, this was his only recourse, even though it meant leaving his beloved at home with her dementia.

Father went into the hospital supposedly for five days. But the doctors, who didn't even show up for three days, couldn't find a balance between pain control and mental alertness until three weeks later, during which time my mother lost control as I extended my unpaid leave of absence to stay home and take care of her.

The relentless progression of ALS was corroding Mother's mind and body. She was choking constantly while eating, yet she would sneak food to her bedside, putting herself at grave risk for choking to death. She threw tantrums, was agitated, called her husband constantly to ask when he was coming home, not knowing the dire situation he himself was in. She could no longer dress or bathe herself, so I did everything for her, between hospital visits. And no matter how bad the day had been, at night she always thanked me for everything in her increasingly guttural, muddy voice.

The social workers wanted to separate my parents, but I wouldn't allow it. I didn't know much about caregiving, but I knew that their love was more important than home health care. Once again Sam came in to relieve me, but this time my mother rebuffed her terribly, a shocking reversal of affection and devastating to my aunt, who was already grieving terribly.

With my aunt there, I was able to return to California. A few days later, however, just before Dad got out of the hospital, Sam slammed her hand in the car door after tucking my mother into the passenger seat. Crying all the way to emergency and devastated by my mother's coldness, she knew she could no longer stay with them full time. She never had the heart to tell her brother why, and so continued to suffer tremendous guilt.

A parade of strangers

We had no consistent in-home help. With a bank balance of only $10,000, Dad didn't want to spend the $7 per hour; mom couldn't cope with a parade of strangers. Most of all, though, they wanted their privacy. With my husband Bob's blessing, I offered to move home; Dad declined, not wanting their illnesses to become our lives.

We invited them to live with us, but they were already too frail.

I was in a bind, distraught over taking so many leaves of absence, afraid my bosses would cut me off -- and I couldn't afford to quit and take care of my parents.

So we had no choice but to hire in-home help, at first for $600 a week. Soon both my parents were slipping down the precipice so steadily that they needed round-the-clock care, which shot up to $6,000 a month. In no time we were all nearly bankrupt: My parents' carefully managed retirement funds were gone, as was their savings -- almost $150,000 spent in just over a year, despite insurance. Medicare wouldn't cover the kind of personal care they needed.

In desperation, I went behind their backs to do a fundraiser even though Dad said they wouldn't take charity. I was able to raise enough money to last a while, but it looked like they would still have to move to a nursing home.

By June I was barely able to drag myself along the commute to work, 50 miles each way; there was no rest at home, either, because our beloved old cat was dying. I had no ability to concentrate or remember, worrying about how to pay for more trips home, how to keep my parents together. I was apathetic, depressed, angry, hopeless. My waking moments were singed with anguish, my nights gasping for breath, gnashing teeth and screaming. Yet, foolishly, I didn't dare ask for any personal time off. Unable to save my parents, I didn't feel worthy of care for myself.

When I went home to celebrate my parents' 49th anniversary at summer solstice -- a time when Bob and I loved to bask in the Kansas sun and their warmth -- my mother weighed about 70 pounds. She had no control over the excessive drooling, which soiled her favorite outfits and aggravated her sense of propriety. She walked with great difficulty, and could no longer lift her hands to eat. All food, with medications, had to be pureed and at a certain temperature, fed by drops for an hour because she could barely swallow. Ever the musician, by day she played the piano with only her left hand, while at night her toes tapped out a special melody that no one else could hear.

In the dark

One day my father gave in to my mother's incessant proddings to survey the garage, where I had moved his office. But it was a disaster from the outset, setting off a chain of pain that destroyed all physical progress he had made. Five minutes after we transferred him, carelessly, back into bed, Mom started nagging him again to see what I had done in the garage. In her fixation from dementia, she had become oblivious to his pain. Dad yelled at her, then broke down, so ashamed for having lost control with his dying wife, so devastated by what had happened to her. He was never able to get out of bed again of his own free will.

Each time I dressed my mother or tucked her in at night, she thanked me and vowed, "Our love will never end." I would always leave the room in tears, ripped in half by my love and my sorrow. Each night Dad and I had our father-daughter time after I helped empty his catheter and colostomy bags. We talked, as we had all my life, about wonderful and challenging topics. But I could never get him to discuss long-term care plans, and I was getting anxious about what to do if they lived much longer. Of course, I could never mention the "D" word. But Dad never told me where any of his legal papers or financial accounts were. I was in the dark, panicked.

By midsummer their medical conditions had so deteriorated that home care was costing $15,000 a month, even with hospice benefits. The home health agency was threatening to raise rates or pull out because of the work load and my mother's lack of cooperation. My parents, who had always exercised and eaten right and who were in the bloom of health other than being terminally ill, were living well past prognosis of death.

The social workers demanded that they enter a nursing home, for safety and finances. It was the ugliest struggle of my life, to convince this proud gentleman to leave his home, to admit he was dying. They moved just after Dad's 70th birthday. On the way out, he asked the paramedics to stop and let him enjoy the fresh air -- this avid golfer hadn't been outside for 10 months. My mother never had a chance to say goodbye to her life -- to her beloved piano, to her family heirlooms -- because Dad didn't tell her they were going until 15 minutes before they left.

When I arrived at the nursing home, their faces were ashen and sunken, but brightened when I walked into the room. It was a glorious, velvety summer's eve, the kind that defined my childhood, but I had no heart for the velvet thrumming of cicadas and the warm prairie breeze. I felt so alone, so incompetent and ignorant, so guilty that I couldn't save my best friends. I had kept them together, but at what cost to their pride and happiness?

An uneasy transition

Even though they were pampered and placed in a sparkling new room, Father hated everything in that place. He had lost his privacy, his independence, his future. My disoriented mother repeatedly stuffed her few belongings into garbage pan liners, trying to get back home. She kept gurgling at me, and I finally realized she was not asking "Where is the mail?" but "Where is Mel?" She hadn't ridden over in the ambulance with him, and couldn't make the connection. She thought her husband was still at home.

My father cried when he realized she didn't know him. He had been keeping himself alive, in unfathomable agony, so that she wouldn't be alone. And now he didn't even have her.

At the end of each trip I said goodbye, not knowing if I'd see my parents again, a moment always full of awful grace. But this time when I left, it was like none other. My father squeezed my hands so tight, cloaking me in the security of his loving kindness, that the pain of separation has not gone away, even today.

The day after I got home, we had to put our cat to sleep. Ted died in my arms at home, and hellish though it was, we were comforted to have relieved his suffering. The irony was wrenching; he seemed in better shape than my parents. I wondered where mercy lay.

My father died two months later, on Thanksgiving night in bed-rattling pain, after being assured that his wife would be well cared for, and after thanking everyone. I was relieved for him, but it was like licking honey from a razor's edge. My mother could not attend the funeral -- could not even remember that her husband had died. Every time I reminded her, I felt I was killing her worse than any disease ever could.

We moved her to the Alzheimer's ward. For three weeks Bob, my lifeline and sanctuary, stayed with me at the condo. Exhausted and alone and crying, we sorted through all their belongings, separating what to ship home, leave for the estate sale or give away. When I sold the piano to pay for Mom's further keep, I ran from the house -- I couldn't watch the movers take it away, while she was still alive.

"Thank you for everything"

One day before we left, my mother found a stuffed white unicorn on her bed. No one knew who had left it there. I placed it in her arms, and as she held it to her emaciated breast, tears spilled over its face as she stroked its fur. I realized then that she had always known what had happened to her -- and borne it silently, wanting to protect her family.

The night Bob and I left for California, we three played a game batting a balloon with our heads until I was so overcome that I grabbed Mom, sobbing how devastated I was that this had happened to them. As we left she said so sweetly, "Thank you for everything." She looked into our eyes with vast love, then turned and disappeared into her new world.

My mother passed away peacefully two weeks later, weighing 50 pounds, paralyzed and bedridden, deliberately starving herself to let it be over. She died five days after my 44th birthday, which she had forgotten. Even though I was grateful for mercy, losing her was even worse than losing my father. She was buried in the dead of winter as the coffin was lowered into three feet of ice water. Rain fell like an applause.

Yet the knowledge that they were out of pain meant that my own healing could begin, a release from the despair and self-pity that were consuming me. In June I held the ceremony to unveil the headstone at the grave site, and went back to the condo one last time, before the bank foreclosed on it because of business debts. I heard an unfamiliar sound out on the deck, and when I went to look, was greeted by two cardinals, a male and female, singing their hearts out. These had always been my parents' signature birds, but never had I seen any around that condo in 15 years. Yet there they were, as if to let me know that I am not alone.

A month later I had this dream: I am sitting at a table with my parents, and my father keeps repeating a phrase. Finally it registers: "The red cardinal only comes out in the winter." I jump up, exclaiming, "So it was you at the condo!"

And as they rock back, laughing yes, yes, I run to them, and we hug until I wake up.


This article originally appeared at:
Consumer Health Interactive online, www.mylifepath.com

Beth Witrogen Mcleod

Beth Witrogen McLeod is an author, journalist, speaker and consultant on caregiving, end-of-life issues and renewal at midlife, especially for women. She is a double Pulitzer Prize nominee, and has won many national and regional awards for her work. She has written for Good Housekeeping, SELF, Family Circle, and The Wall Street Journal, among others. Her latest book is Caregiving: The Spiritual Journey of Love, Loss, and Renewal www.Witrogen.Com

Her expertise grew out of personal experience caring for her parents who were simultaneously terminally ill 1,200 miles away. With a father dying of a rare form of cancer and a mother with Lou Gehrig's disease and dementia, McLeod learned firsthand about the traumas and blessings of this mid-life rite of passage. She turned her experiences into a passion for public service, first writing and producing an award-winning newspaper series, "The Caregivers," for The San Francisco Examiner in 1995. It was nominated for a Pulitzer Prize. She developed a weekly column for The Examiner that often appeared on the New York Times Syndicate Web site. Honors for the series included National Hospice Organization, Pew Charitable Trusts, American Legion Auxiliary, Society of Professional Journalists, and many regional and local social service organizations.

.More About Beth - http://www.care-givers.com/pages/experts/aboutbeth.html

Web Site: http://www.witrogen.com

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