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    Shattered Dreams---But Hope: Encouragement for Caregivers of Huntington’s Disease and Other Progressive Illnesses
    Shattered Dreams---But Hope: Encouragement for Caregivers of Huntington’s Disease and Other Progressive Illnesses
    Shattered Dreams---But Hope: Encouragement for Caregivers of Huntington’s Disease and Other Progressive Illnesses
    Ebook116 pages1 hour

    Shattered Dreams---But Hope: Encouragement for Caregivers of Huntington’s Disease and Other Progressive Illnesses

    By Laquita Higgs and Elton Higgs

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    Shattered Dreams--But Hope by Drs. Laquita and Elton Higgs, is a book of both testimony and advice: testimony born out of the school of trial and suffering, and advice born out of practical experience in being long-term caregivers. Laquita and Elton have for the last 26 years been caregivers to two adopted daughters with early onset Huntington’s Disease (HD), which is hereditary, and they offer a gripping account of their extended experience in adjusting to the challenges of long-term caregiving, followed by sober practical counsel to others who are involved in similar caregiving experiences. A final chapter speaks specifically of the role of Christian faith in coping with the stresses of their long struggle. In the Appendices are a short talk given after Cynthia’s funeral by her older sister Liann and several poems by Elton on the emotional impact of his and Laquita’s relationship with their disabled daughters.

    The complexity of the story told by the Higgses is heightened by the fact that their two youngest adopted daughters are mother (Cynthia) and biological daughter (Rachel). Elton and Laquita adopted Cynthia as a baby, knowing that she had HD in her background but hoping and praying that she would not develop the disease. Her childhood was normal, but when she became an adolescent, she began to manifest behavioral aberrations that her parents later recognized as being consistent with early onset HD. At age 25, Cynthia was diagnosed as having the disease, and soon afterward she became pregnant with Rachel. Since it was apparent that she could not function as a single mother, Laquita and Elton agreed to adopt Rachel at birth. This action ushered them into a complicated care-giving relationship that has lasted for more than 25 years.

    Laquita and Elton emphasize the difficult but necessary development of trust in God’s goodness and a deep conviction that He is at work even when we can perceive no immediate evidence of it. Especially poignant is their very personal confession of their mistakes in caring for their HD-affected daughters and their struggles to understand that HD, not mere perversity, was the primary source of their daughters’ irrational and angry behavior. Thus, they had to accept that expecting their daughters to be normally responsible persons was both futile and unproductive. Instead, they had to learn simply to love them with God’s love and to pray constantly for God’s wisdom in carrying out their task. It is from this perspective of learning to survive through hardship that Laquita and Elton tell their story and offer both practical and spiritual counsel for caregivers everywhere.

    LanguageEnglish
    PublisherThomas Nelson
    Release dateJan 14, 2020
    ISBN9781400329533
    Shattered Dreams---But Hope: Encouragement for Caregivers of Huntington’s Disease and Other Progressive Illnesses
    Author

    Laquita Higgs

    Laquita and Elton Higgs grew up in Texas and moved to Michigan in 1965.  They both have Ph.D.s, Elton in English and Laquita in history. Elton taught at the University of Michigan-Dearborn for 36 years, and Laquita taught there part-time. They have three adopted children, the younger two of whom manifested Huntington’s Disease and are the subjects of this book.  Laquita and Elton are committed Christians and are active in their local church, as well as writing articles for Christian publications.

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      Book preview

      Shattered Dreams---But Hope - Laquita Higgs

      "I

      know she’s in a better place, but why does it hurt so much?" I (Laquita)¹ did not ask that question regarding a loved one who had died, but I was referring to our then 21-year-old beloved adopted daughter, Rachel, who was carried away from our home, screaming and tied to a gurney. She was taken to the psychiatric ward of the local hospital, and the expectation was that she would be placed in adult foster care, never to return home to live with us.

      Or so we thought. As it turned out, a suitable placement was not found for her, so after 3 weeks in the hospital, she returned home for another 2 ½ months. We were very grateful for that additional time with her. We had a few good days during that period, but the good days never lasted very long. Finally, after a day of out-of-control anger and a suicide gesture, Rachel had to enter the hospital once more. That time, upon being discharged from the hospital, she was placed in adult foster care.

      Rachel has Juvenile Huntington’s Disease, which has gradually taken away her judgment and ability to reason, with the result that her behavior was out of control and dangerous to her. We had wanted so very, very much to keep her for the rest of her life, which, we all knew, would be severely cut short by the disease. We tried so hard.

      At this time, Rachel has been in her new home for 3 years, and we still have moments of overwhelming sadness. They are fewer now, but the underlying sorrow continues. We grieve to see what this horrible disease is doing to her mental and physical abilities. We grieve about her shattered dreams and her great potential that is gone forever. We grieve that she is facing progressive debilitation and loss of all her functions. She is slowly dying.

      Rachel is not our first daughter to have Huntington’s Disease (HD). Rachel’s birth mother, Cynthia (also adopted), died with Huntington’s Disease 7 years ago at the age of 42. Little Rachel grew up watching Cynthia slowly decline until she was totally helpless. Rachel was very bright. She knew that Huntington’s Disease was genetic, and she realized what that possibly meant for her. When she was around ten years old, she asked, Will I get it? We had to answer honestly, We don’t know, though we desperately wanted to assure her that she would never have that terrible disease.

      Sadly, Rachel was diagnosed on April 18, 2012, with Juvenile HD (JHD), just 3 days before her 18th birthday. Since then, she has been hospitalized in mental health wards six times, and at age 22 was placed in an adult care facility. We were heartbroken.

      We know all too well of the suffering caused by HD, but our desire is to turn our sorrow into something useful. Caring for an HD patient is an extremely difficult and uncertain challenge. We have made many mistakes as caregivers, but, over time, we did eventually learn some coping skills that were helpful the second time around with Rachel. We are not professionally trained for caregiving. We are not psychologists or neuroscientists, and we continue to make mistakes—and to be baffled about how to handle this problem. Nevertheless, we do want to offer a few practical strategies and suggestions that have proven to be helpful to us. We wish we had known a lot of this from the beginning. Perhaps the following account of our problems and mistakes—and the lessons that were painfully learned—may be helpful to others.

      We realize that our suggestions are limited to our experience with Cynthia and Rachel, both of whom became symptomatic earlier than the average HD patient. This account, then, may be most helpful to caregivers of young adults with HD. Such youthful HD patients do not have the chance to gain maturity, so they largely remain stuck in a kind of adolescent limbo, often with a desire to rebel against parents and their values. The stubborn contrariness typical of HD does not help either. Furthermore, the hormones are raging, so they also contend with hyper-sexuality, which is accentuated by the poor impulse control of the HD patient.

      On the other hand, since the poor judgment, irrationality, quickness of frustration and anger, apathy, and lack of impulse control are common traits of many HD patients, maybe our story can be of some help and encouragement to caregivers of older adults with HD, as well as caregivers of other long-term progressive illnesses. Our experience is primarily with behavior problems, for, unlike many caregivers, we have not had to cope with the day-to-day care of the HD loved one in the later stages when the physical debilitation is the biggest concern. With our youthful HD daughters, the out-of-control behavior, coupled with our age in Rachel’s case, necessitated their being placed in a care facility before the physical impairment was advanced.

      We realize that we have an advantage in that there are two of us to care for our HD loved one. We know that we have it easier than those caregivers who are alone in caring for a spouse, a child, or a parent, and sometimes they are caring for more than one HD patient. We greatly admire those courageous caregivers; they are worthy of the highest praise.

      Before discussing what experience taught us about developing strategies for coping with HD behavior, we shall first give a brief account of Cynthia’s story and then tell you more about Rachel.

      Notes:

      ¹ This book is a collaborative effort between Laquita and Elton, but it was Laquita who felt that we must do this, so the writing is almost entirely hers. The I passages are specifically hers.

      In

      1968, back when it was easy to adopt children in this country, we applied a second time for adoption. We already had a beautiful, healthy 2-year-old adopted daughter, so this time, knowing that many handicapped children were never adopted, we said, in our youthful idealism, that we would gladly take one.

      The adoption agency asked us to consider a little girl who was at risk for Huntington’s Chorea, as it was then called. She was labeled as handicapped. We had never heard of the disease, so we researched it, but there was not much information to be found. What we did find, however, gave us pause. Personality change and psychological problems were mentioned. My immediate response was that I didn’t want any part of that. But we are people of faith, so we thought we should pray about it, and, somewhat to our surprise, we began to feel very strongly that we were to adopt 8-month-old Cynthia. She was a beautiful little girl with golden curls.

      The agency gave us a little information about Cynthia’s background, and, at the time, it was only her grandmother who had the disease. That meant that, statistically, Cynthia had only a 25% chance of having it, so the odds looked good. We chose to live as if she was not going to have the disease, so we didn’t think about it often, but when Cynthia was 13, we received a letter from the adoption agency informing us that Cynthia’s birth mother was symptomatic. That increased Cynthia’s chances of getting the disease to 50%, though in reality, if she had the gene, she would certainly get the disease.

      We thought that the many, many difficulties we had with Cynthia in her teen years were just teenage rebellion. Looking back, though, we think that HD was already at work—research now tells us that it can affect thinking and behavior as much as 16 years before the onset of observable physical symptoms We also wonder if the HD gene was triggered into action by puberty, as the change at that time was sudden and extreme.

      Then came the first of many, many mistakes that we made with Cynthia. First of all, we waited to tell her that she was at risk for HD. Since she was adopted, she was never around anyone with HD, so there was no reason for her to ask questions about

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