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  • Writer's pictureSharon McClellan Thomason

The Grief of Huntington’s Disease

This is the first article in a four-part series.

Traditional teachings of the Western culture say that there are five stages of grief involved in death and dying—known as the Elizabeth Kübler-Ross model, the stages are denial, anger, bargaining, depression, and, finally, acceptance. According to Kübler-Ross, one may cycle back and forth among the first four stages, finally reaching acceptance. But what happens when we are confronted by the complexity of Huntington’s disease (HD) or Juvenile Huntington’s disease (JHD)? Grief can get messy. What “normally” might look like this:


expands even beyond the more recent seven-stage model and ends up, instead, looking like this:


“Grief starts the moment your loved one is diagnosed,” says Stacey Sargent, a mother who lost her son, Cory, almost two years ago after a long and courageous battle with JHD.

“My grief started the day we found out my husband had HD [Huntington’s disease],” agrees Lynn Shaw Cohen, adding, “He was my fiancé then, seven years ago. At that time I grieved the life I knew we would never have. He didn’t have symptoms then, but we decided not to have kids. He decided to stop being a pilot. The loss started right away, even before HD showed its ugly head.”

This type of grief, often referred to as anticipatory grief, can be extremely powerful, as those who live with HD and/or JHD know all too well. Harriet Hodgson, who co-authored Smiling Through Your Tears: Anticipating Grief in 2005, defines it as “a feeling of loss before a death or dreaded event occurs.” In an article for The Caregiver Space, “Why Is Anticipatory Grief So Powerful?” (April 16, 2015), Hodgson outlines the factors that give this type of grief its power. I have taken the liberty of paraphrasing here:

Your thoughts jump around among past, present, and future, often making it impossible to stay focused.Every day brings a new day of grief with no closure—the grieving cycle is not completed, and you begin to feel like it’s tearing you apart, with no end in sight.You’re on constant alert, not knowing when the end is coming, and friends and even family may wonder why you’re grieving when no one has died—yet.Because you feel others won’t understand, you “stuff” your feelings, never really dealing with them, until your life is ruled by uncertainty.It becomes complex, continually expanding as you wait for the inevitable end.There’s a shock factor, not of sudden, unexpected death, but of a slow-moving train that has you in its sights, slowly but surely mowing you down, with no escape—but not knowing at what point it’s going to slam into you.There’s no endpoint, so life is put on hold, filled with uncertainty. The only certainty is that the end is inevitably coming.You bounce back and forth between hope and despair. Every new clinical trial, drug, or therapy brings hope—hope that is snatched away when the drug or therapy doesn’t work, and there’s STILL no cure.

I’ve lived with this for nearly 35 years, and it’s hard to hope any more. I can remember when the gene was discovered in 1993, and “they” said we’d have a cure in 10 years! Here it is nearly 25 years later, and there’s still no cure—and none expected within the near future. I hear the hope expressed by younger members of the HD/JHD community, and all I can think is, “I felt like that once.” After losing a husband, a marriage, an income, the father of my child, two brothers-in-law, and now facing the loss of my son, my only child, it’s hard to hope any more.

Anticipatory grief seems to be especially common among those of us who are living through second or third generations with this disease, I imagine because we’ve seen the full spectrum of the collateral damage.

Pat Wolf says, “From the moment I found out my son’s dad and my youngest son tested positive, I’ve had grief, and my son is very much alive. Also, raising my grandson whose mom refuses to test . . . he’s at risk, also, and I have grief over that also.” Wolf also took care of her current husband’s first wife, who had HD, and is helping to care for his son, who also has HD.

“It is not healthy to look to the future and grieve before something happens,” says Nathan Schattke, “but with HD, we have seen it before. The years of bedridden care are coming as inescapably as a boulder rolling down a hill. Redirecting toward joy and living in the moment works most of the time, but late at night, after reading other families’ troubles and seeing it coming, the grief overwhelms me.”

While grief, for me, began with symptoms of HD that I didn’t even realize were HD, it was compounded with each succeeding loss. I grieved when my husband became so depressed that he wouldn’t get out of bed or speak to me for as many as two weeks at a time. I grieved when he drank and became violent—first toward me and then toward our son. I grieved when we had to move because he couldn’t find work and then when he lost three more jobs. Then came the diagnosis. I grieved the fact that we would not grow old together, sitting on the porch, rocking and reminiscing, enjoying our grandchildren in our sunset years. We went to marriage counseling, but eventually separated, which then turned to divorce. I grieved the loss of my soul mate, my marriage, my family unit. Our son cried and was angry at the loss, and I grieved over that. I grieved over knowing that I’d brought an at-risk child into the world. At first, my husband and I had shared custody, but as he began to endanger our son’s life, I had to go back to court and have the judge order supervised visitation. I grieved again. My husband became so angry over that that I could no longer be allowed at his mother’s house, where he was living, and so I grieved the loss of my extended family, though his mother never turned her back on me. I grieved the loss of intimacy, the loss of a partner, the loss of someone to celebrate with every time our son reached a milestone. With each cognitive and physical decline, I grieved again. When he had to be Baker Acted, I grieved. When he had to go from the psychiatric hospital into the first of three nursing homes, I grieved again. Every time we visited him and saw further decline, I grieved again. When we took him to the funeral of his brother who’d committed suicide rather than lose more of himself to HD, I grieved as he shook so badly that our son and I had to physically hold him in his wheelchair to keep him from bouncing out of it. I grieved when we took him out of the nursing home to attend our son’s graduation, and I had to feed him through his feeding tube, and we had to lay him down in the back of a van to get him to the ceremony.

Several months before Paul’s death, our precious son decided to have “the test.” A month later, we got his results—a CAG of 45—and I collapsed in the arms of a friend who went with us. Our son was stoic. At 18, he seemed so much stronger than I was, and he refused to let anyone tell his daddy he’d tested positive. Seven months later, when Paul’s mother lost her home, and he ultimately lost his life in Hurricane Ivan, I grieved on many fronts. At Paul’s funeral, I requested the Vince Gill song, “Go Rest High on That Mountain,” and as I sobbed over all the many losses, I thought I was through grieving, knowing he was finally at peace, but I was wrong. So devastatingly wrong.

Three years later, our son started down the slippery slope of HD. He had his first psychotic break. He dropped out of college. He abruptly quit his job without having another. He had multiple wrecks. He started abusing alcohol and illegal drugs. He caught his house on fire. He lost his house because he wasn’t paying the mortgage. He was in and out of psychiatric units, hospitals, and rehabs. He was arrested for domestic battery. He was arrested for violation of parole. He was in and out of dangerous, toxic relationships. He disappeared a couple of times, for days at a time.

This was my golden child, the one who’d been in gifted classes, had lots of friends, played saxophone in the band, played multiple other instruments, was a gifted artist and writer, and who never gave me a moment’s trouble. Rules were followed, grades were good, and he was loving and thoughtful and considerate. I felt like I had lost my son, and oh, how I grieved. I almost literally lost him to suicide—twice—and despite all the grief I’d felt through the years with Paul and his brothers, it didn’t even begin to compare to the grief I felt over my son’s suicide attempts. Just the thought of losing him sent me into a tailspin of despair. Ultimately, he was involuntarily committed to the state mental hospital, and while they kept him alive, the atrocities committed there were another great source of grief.

Once I got him home and stabilized, I began to grieve the things that are already lost and those that will never be. He no longer drives. He doesn’t have a girlfriend and will likely never marry. He doesn’t want to have children. He is unable to work. Over the past year, severe anxiety has overtaken his life, and he rarely leaves his room, much less the house. I had dreamed of taking him on wonderful trips while he’s still able to travel, but that is not happening. There is not a day that goes by that I do not grieve, and with his isolation has come an isolation of my own—some of my own volition, some because people don’t “get” it, and it’s exhausting for them to be around me.

“Anticipated grief is lonely,” says Barb Sipes, who is caring for her husband who has HD. “Dreaded. Feared. It’s not anything you truly accept. You push it away until it breaks loose and overwhelms you again.” You can hear the despair in her voice as she says, “Waiting. Waiting.”

Tomorrow’s installment of this article talks about the psychology of grief.

Tune in to “Help 4 HD Live!” on Blog Talk Radio Wednesday, July 26, at 4 p.m. ET/1 p.m. PT to hear a discussion of grief with pediatric hospice nurse and certified grief recovery specialist Lanise Shortell.

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