After Polly’s death, I refl ect often on our nearly 32 years of marriage, and particularly of the 20 years of walking with her through her journey with Huntington’s Disease. Yet, caring for Polly was the greatest blessing in my life.

Diagnosis Confirmed

Polly and I met during our college years at Seattle Pacifi c University, and I remember to this day being “captured” by her disarming warmth and cheerfulness. She was majoring in elementary education and loved to play the piano. Before college, she had been a school cheerleader and a member of the swim team. She hada wonderful heart that loved to help others. Her idea of a great summer was to work as a missionary among the Indians in British Colombia or help at Christian camps in the USA.

When we married on September 11, 1971, we had no idea that thirteen years later our lives would be greatly changed when Polly was diagnosed with Huntington’s Disease (HD). Back then, there was no clinical test for HD—no way to know that you carried this illness until the symptoms began to reveal themselves. But over the course of a year and two visits to the University of Texas Health Science Center in Dallas, TX, Polly’s doctor concluded that he was “99% certain” that she had HD. From that moment on, no aspect of our lives were untouched by this reality. We learned that her health would gradually decline over the course of the next fi fteen years or so, and that only a very small percentage of HD patients survive more than twenty years.

The Nursing Home, Our Home

Over the next nineteen years Polly’s limitations due to HD proceeded slowly but steadily, until she was taken home to heaven on August 6, 2003. Throughout these years, Polly never held back from the challenges that confronted her. She gradually had to give up one activity after another: driving, cooking, dressing and feedingherself. As it became increasingly unsafe to leave Polly alone and since she needed someone to help with all aspects of her life, the day came when she sat in our living room and said to me, “Rick, I think it’s time for me to move to a nursing home.” We both knew it was time, yet we had two children to continue raising (Jeff, 12, and Jill, 15) and I, a full-time ministry to pursue.

Until this time, I had never spent much time in nursing homes. But the day I moved Polly into her room, I realized we were entering a very different world. Most of the people in this nursing home were quite disabled. With nightly visits and development of relationships with the staff and the other residents, Polly’s nursing home soon became my home as well. Her world became my world. The highlightof my day for the next eleven years was to drive to her nursing home to be with her in the evening, and when I could, to go at lunchtime to feed her. At first, Polly used a walker, and we would walk down to the dining room to sit alone at a table, and talk about our day. Later Polly was in a wheelchair, and I would wheel her outside to a bench that was shaded by trees. We would sit and watch the birds, and pray together.

Actually, Polly’s move to the nursing home enhanced our life in many ways. The year before her move, we were beginning to sink under the load of all the activities necessary to maintain our life. But with the assistance of the nursing home staff to cover many of these things, the time we spent together could now be devoted to other things that added to Polly’s quality of life.

In Sickness and In Health

For several years I brought Polly home on the weekends, and scheduled special outings—a ballgame, a concert, a movie, a drive to a lake. The anticipation of these events brought an element of hope and joy to Polly during the long weeks at the nursing home. We all need hope—even the little hope of a change of pace each weekend. I remember one day when Polly looked at me and said in her slurred speech, “Rick, you help make my life worthwhile.” Perhaps my reporting this sounds self-serving, and maybe it is. But that one statement stayed in my heart for many years!

Six years before Polly’s death, her physical condition began to decline rapidly. To sustain her life we permitted her doctor to insert a feeding tube in her stomach. This made it much more diffi cult to transport her to places. The last four years before her death, Polly was rarely removed from her bed, except when taken to the shower room. No longer was it a matter of bringing Polly to places she could enjoy, but of bringing joy to Polly in her room. Worship became our most meaningful activity together. Though Polly could not speak, and I am not much of a musician, listening to music together brought much comfort and joy to our hearts.

But How?

Throughout our 20 years of journey, I asked many questions. At fi rst, it was natural to ask “Why?” But we knew that we live in a fallen world, and none of us can claim immunity from life’s struggles and even tragedies. It never entered my mind to ask “What?” That is, “What shall I do as Polly’s husband?” I knew I was with her for the “long haul”—no matter what! But I did at times ask, “How?” “How are we going to do this?” “How am I going to care for her, raise our two children, continue in full-time ministry, and for a few years during this journey, care for my mother with Alzheimer’s, and my dad who was seriously ill?” It didn’t take me long to realize that apart from the Lord there was no way to do this. It was an impossible task. I also knew that we weren’t “apart from the Lord.” He had shown Himself faithful to us in many ways through the years. He wouldn’t stop now!

Shortly after Polly was diagnosed with HD, I read this statement in the Psalms, “Cast your burden upon the Lord and He will sustain you; He will never allow the righteous to be shaken” (Ps. 55:22). In the margin I read that the word “burden” could be translated “what He has given you.” The Lord impressed on me that the burden we had been handed was also in some mysterious way, which I could not yet understand, a “gift” from the Lord—not something He had caused—but something He could touch and transform. It would be many years before I would even begin to see how this could possibly be true.

Evidences!

Throughout Polly’s illness, I kept a journal in which I recorded evidences of God’s hand on our life. Today, this journal is one of my most precious possessions. It is the record of God’s faithfulness in guiding and providing for us, even though at times my own personal faith was very much of the “mustard seed” variety.

The journal contains many entries: God enabled me to remain in a full-time ministry that allowed me the fl exibility to provide the increasing level of care that Polly needed. Special families who lived near us helped shepherd our dear children during the years they were growing up and we were stretched beyond our capacities. When it came time for Polly to enter the nursing home, our neighbor Melanie Miller, a nurse, informed us of Brentwood Place—the one facility in Dallas County that had a preponderance of younger residents (Polly was only 41). Then four years later when Polly’s needs were increasing, Melanie informed us of the opening of a new nursing home on the shores of Lake Ray Hubbard, where Polly resided the last seven years of her life.

At times of decision making, God brought people across our path that had just the insight or encouragement we needed. When Polly had to make a decision about a feeding tube—a really huge decision, the very day we were contemplating it, I entered a room at the hospital where I serve as chaplain, and surprisingly found an HD patient and her husband. Only about once a year do I encounter HD patients in the hospital! Yet on this day, this wife, who had made the decision Polly was contemplating, gave us the encouragement we needed with regard to the feeding tube.

When I was tempted with discouragement, the Lord provided many small evidences of his presence. My journal records many interesting “coincidences” which, when strung together over a couple of decades, become not “coincidences” but“providence.” God’s fi ngerprints were definitely on our lives during Polly’s final weeks and days. The morning before Polly entered the hospital for the last time, I was preparing for my day and listening to a Christian radio station in the background. As was my custom before leaving my room, I sat down on the bed to read the day’s selection from the devotional “Daily Bread.” Before reading, I reached to turn off the radio and the words of the spokesperson on the radio caught my attention. He said, “If you knew that today would be your loved one’s last day, what would you say to him or her?” The devotion reading that day dealt with the same theme, “Say It Now!”

That night when I went to see Polly, I made a special point to be alone with her to tell her how much I loved her. I thanked God for her, and thanked her for all she had done for our family. Even though Polly could not speak, the look in her sweet brown eyes spoke more than words could tell. The next night she entered the hospital and two weeks later I was standing at her bedside as she left this world for heaven.

The Reshaping Process

Just as important as what the Lord was doing for us, was what He was doing in us. When Polly became ill, God enlisted me in a life shaping process. Part of this process involved His gentle and patient chipping away at qualities that needed to diminish in my life. The other part was gradually instilling in my heart the qualities He wanted me to acquire.

The first of these qualities was a sounder faith in the Lord. The assignment the Lord had given us required faith at a different level than I had known before—the kind of faith that trusts in God’s goodness, and the goodness of his purposes, even when they are unknown to us.

The second quality God instilled in my heart was hope—an expectation not just of “good times to come,” but that as God’s goodness has been revealed in the past, so it will be unveiled in the future. Even in the face of death, there is the wonderful hope of eternal life in heaven, and the resurrection to come!

The third and most important quality God worked in me was love. I loved Polly before her illness. But her illness tested our love, and took aim at it. God used the illness to transform my love— to grow in genuine self-giving and self sacrificing love. I learned that there are many ways to spell love: dressing, bathing, feeding, carrying, smiling, laughing, crying, reading, singing, just sitting together. In a society that places its highest premium on appearance and ability, people whose illness robs them of these very things can feel devalued. The most signifi cant gift I could give Polly was to communicate to her by words and by my actions that she was the most valuable human being in my life. And she was! Caring for Polly was the greatest blessing of my life, and though I would never want her to go through again what she did these twenty years, if she had to, I would be first in line to go through it with her.

During Polly’s fi nal years of life, I began praying that her departure would bring glory to God in some way. That day has come and gone, and I believe God answered that prayer. He magnifi ed in Polly all that he did for us and all that he did in us. And He will continue to do His work in us until we see Him in glory.

(Richard D. Rood has been a chaplain at Mesquite Community Hospital, Mesquite, Texas, since 1996. Before becoming a chaplain, he served as the director of publications for Probe Ministries, worked in a ministry with International Students, Inc., and pastored a church in the Seattle, WA area. Rick and Polly’s two children, Jeff and Jill, are both married.)

Editor's Note:
Huntington’s Disease is a hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. In 1983 a marker for the altered DNA causing the disease was found, and a decade later, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. More than a quarter of a million Americans have HD or are “at risk” of inheriting the disease from an affected parent.