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  • Writer's pictureSharon McClellan Thomason

The Grief of Huntington’s Disease, Part 3

Grief is not limited to caregivers, and it can sometimes result in rifts among families who should be coming together instead of being torn apart by a diagnosis.

According to Sandra Gann, almost 62, who was recently diagnosed with HD, “I chose to be tested because of my kids and grandkids, hoping I would be negative so they would not have to worry since it does NOT skip a generation … but I tested positive. Although in our family, the HD does NOT seem to have the devastating physical effects that some experience, it does affect the speech and communication centers, and we do have the chorea … and the emotional extremes and the problems that come with not being able to filter thoughts before words come out.

“There just seems to be a continual undercurrent of anger/frustration/ sadness … yes … GRIEF,” Gann added, “at the thing that cannot be changed, and at the pretending of some of those in the family, the denial that the HD has some or even any effect on the emotions, the social interactions … it contains a resignation that some will never ‘deal with’ the positive HD diagnoses of those who chose to be tested … or the denial and refusal of some to be tested at all … because they themselves think as long as they are undiagnosed, then they are ‘normal’ while the diagnosed are ‘unbalanced’ … a continual grief … that continually recycles the stages of grief as each progressive stage of HD happens, and again when another family member is diagnosed as positive.”

People with HD also grieve the loss of their sense of who they are as individuals.

“I grieved the loss of my identity,” says Cameron Wedge Howard. “I was a phlebotomist, a wife, and a mother. I had worked in the medical field for over 20 years; it was my life. My identity. It was a profession where there is absolutely no room for error, and with my cognitive skills deteriorating, I had to leave it all behind. As a phlebotomist, which was my specialty—and I excelled in it—the main key is a steady hand, and with my small motor skill problems, I had to lose that part of me. I was a wife that took care of her husband; now, all his time is dedicated to taking care of me. I was a mother that was involved in all school activities, had all the awesome themed birthday parties, was mom to all of my kid’s friends. Now I’m lucky to remember a birthday. So I grieve for the loss of me; then I grieve for being selfish about my own loss, and then I grieve for all my family has lost.”

“Grief is everything and everywhere,” says Kelly Pressy, who also suffers from HD. “You grieve for the life you thought you would have. You grieve for the life you’re given. I grieve for the unknown of my 12-year-old son who has a 50 percent chance [of testing positive]. I grieve for my husband who wants his old wife back. And frankly, so do I. I grieve for everything that’s about to happen into the next 20 years. The burden. The financial strain. I want my life back. Not this shell of existence.”

Complicated grief

Still another type of grief, identified by Saint Elizabeth Health Care on their website,, is complicated (traumatic or prolonged) grief. The nonprofit organization that has been caring for Canadians since 1908 says, “Complicated grief refers to normal grief that becomes severe in longevity and significantly impairs the ability to function. It can be difficult to judge when grief has lasted too long. Other contributing factors in diagnosing complicated or prolonged grief include looking at the nature of the loss or death (was it sudden? violent? multiple?), the relationship, personality, life experiences, and other social issues.” (

With HD and JHD, grief can span generations, lasting for decades, and can be complicated by a delay in diagnosis and the loss of multiple relationships.

“I grieve for my loss of a Mum as she became ill when I was 12,” Gail Lambert says, “and the fact that the person I would go to with all my little problems that seem big at the time was no longer there. She was in a mental hospital, and we did not know what was wrong then. It took 14 years to diagnose. She came out and was cared for at home, but gradually, she was not the same. How I could have done with a mother/daughter relationship. Much as I love my dad, he was not a replacement, as his life revolved around care, and being a traditional English male, he does not do feelings or emotional stuff. Never has.”

Lambert adds, “I grieve for my dad having had such bloody hardship as a carer and little support. We are bonded through that hardship. I, however, am now grieving as he in his 90s, and I will lose the only person who knows what we have been through and someone who has been my life for years. I have been off work for three months with depression.”

In one last moment of reflection, she adds, “I grieve that my dad did not go off with one of the other girls he met when he was young so he would have had a better life.”

“I grieve the loss of my mom twice,” says Melissa Dilley, “once as HD slowly stole her away from me and again when it took her life in 2008. I’ve spoken with a lot of NYA [National Youth Alliance] members who feel the same way … and now I also prematurely grieve the loss of my friends and family who are gene positive.”

Some are caught by surprise, learning only with a diagnosis that the family has a history of Huntington’s disease.

“We found out that HD had been in our family for generations but misdiagnosed or attributed to other things,” says Sandra Gann. “My mother was the first to be diagnosed with the DNA/blood test around 2010, at the age of about 78, and her one living sister also, and me a few years later … but for me, the emotion of anger … not necessarily at the HD, or any incident or person, but just anger in general (and from what I understand the stages of grief to be, anger is part of that) … there seems to be no general pattern for those that I know, but each individual grieves in patterns particular to themselves. My mother seemed to accept her own HD, but grieved more when I had a positive outcome. I did not tell her when I first found out because I was concerned about that … her selfless, generous, loving nature.”

Everyone who spoke about their grief with HD/JHD talked about how it persists, even beyond the death of the person who’s suffering from the disease.

“The grief goes on as the HD victim declines,” says Rusty Clausen-Meyer, “but it also continues for years after the death of the member. It hurts in the gut, like the death has happened before the HD/JHD member is actually deceased. HD reverberates especially when there are several members in one family with it. However, with the death of a family, there remains your HD/JHD community, which becomes a big part of your life, so you really never see the end of HD in your lifetime.”

It can hit especially hard in the face of other losses.

“Grief hit me like a ton of bricks when my mom was diagnosed with ovarian cancer and had to go through surgery and chemo,” says Jessi Suz, who had already lost her dad to HD. “I missed my dad so much and was fighting for my mom’s health, too. I have some vivid memories and dreams of my dad that happened during this time, and I always felt peaceful when this happened. My daughter, who also never met him, talked about him often. I don’t think I have fully ended grieving for him.”

Grief intensifies, too, rather than cycling toward acceptance, as the disease progresses.

“Now, as HD has progressed, the grief has changed,” says Lynn Shaw Cohen. “It has shifted to grief of watching HD slowly take him away. We both try and just make it through the day and focus on today and are thankful we have each other. Grief feels like a weight on my back and a knife in my heart every day.”

Most people agreed that what is missing is a sense of closure. As Peter Lehndorff put it, “If no one else has already said it, there really isn’t ‘closure.’ It is more like a window. Or maybe it is a zipper. For me, it is getting a little better with time. There are things that remind me or make me sad. And moments that make me smile.”

Survivor’s guilt and grief

Survivor’s guilt is a very real part of grieving for the HD/JHD community, especially among those who have “dodged the bullet” of diagnosis while other family members have not been so fortunate in the coin toss of Huntington’s.

“I grieve for my brother, as he was a brilliant chess player and won a lot of tournaments,” says Gail Lambert. “He played in the World Open Chess Championships in New York when he was 18, and God, I am glad he did. I think if I had the disease, maybe he would have gone on to make my mum and dad proud. Give them something. Aside from having a life himself. I have always been there for them, always, but I have not given them any healthy grandchildren. I have not been able to persuade my dad to go abroad, either, and though he spent two years in Italy during the war, two years in Austria after, and went to Paris, Switzerland, and all over the UK, I feel I have let him down. We have always had rescue animals, and they have kept him going. No doubt, I owe everything to dogs. You always wonder if you should have done more.”

Survivor’s guilt can also make it very difficult to express one’s own grief and fear.

“Diagnosis [marks the beginning of] grieving for what could of/should have been,” says one community member who asked to remain anonymous, “watching a slow deterioration of someone you love dearly … but they can turn into a stranger, hurt, angry, and confused. Still them, but can turn very quickly, [so you must] always [be] aware, never let your guard down. Makes me grieve for my older brother that I always looked up to. Scared as you yourself are, looking down the barrel, [you are] unable to show this.”

Spouses, too, experience the grief that comes with survivor’s guilt, often not understanding why they were spared when their loved ones were not.

Says one woman who lost her husband about two years ago, “The grief I deal with each day and night is so vast, you feel lost in it. Grief is overwhelming; when it’s at its worst, I can’t even breathe. I am simply curled up in a ball on the floor, lost in all of it. Larry and I battled for 12 years. There is survivor’s guilt and so much more. I lost my best friend, my soulmate, and to watch him suffer through one of the most horrendous diseases there is robbed us of so much. I live in a vacuum, just going through the motions, not really able to engage in living. I miss his smile, the sound of his voice, holding his hand, laughing together, all the simple things we did. Simply going to the grocery store is agony. I see all his favorite foods that I used to get him, and now I cook for one. Everything I do is for one now. I’m in so much pain; while my heart still beats, the pain is great. The loneliness, the anger, because I wanted to grow old with Larry. We had an amazing love story, and I would do it all over again. Larry was the sweetest, most gentle, loving soul I have ever known. Handsome, funny, such a big heart for others. HD robbed me of my love, and while I hate very few things in this world, I HATE HD!”

Tomorrow, in the last installment, we will take a look at how people cope with their grief.

Tune in to “Help 4 HD Live!” on BlogTalkRadio today 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.

Thank you to our sponsor Teva Pharmaceuticals for making The Huntington’s Post possible.

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