The Grief of Huntington’s Disease, Conclusion

The Grief of Huntington’s Disease, Conclusion

by Sharon McClellan Thomason

How does one even begin to cope with the depths of such all-encompassing grief? Recover-from-Grief.com suggests that first, you must give yourself permission to feel the pain and the loss and even to cry. A number of strategies are recommended, from taking care of one’s self physically, spiritually, and emotionally, to using creative outlets like art and writing and music. There are also grief support groups; many hospice organizations offer these.

There is no one right way to grieve, and coping with grief is as individual as the person experiencing it. Some try to remain strong, not allowing others to see that they are grieving because they don’t want to make things more difficult for their loved ones.

“In the first days after the diagnosis, I was fine at home,” says Kimberly Elizabeth Gordon, “but when I was in my car, I’d have panic attacks. I’d cry in the restroom at school … because I didn’t want my husband to see me cry. He was trying to remain positive, and I didn’t want to bring him down. The grief is always there at the surface, but it ebbs and flows. Some days are worse than others.”

“Everyone that found out about [my husband’s] test really didn’t understand the magnitude of what it meant,” says Lynn Shaw Cohen. “We both spent years just quietly dealing with it in the back of our minds, which was fairly easy to do when not being too symptomatic. There was always that heartache of watching others plan for the future and move on with lives we knew could never be. Right now, my husband puts all of his efforts into exercising to keep his grief into check. I think we both try and do our best to just take the HD challenges as they come, but it’s hard to shake the feeling of the HD boogie man that lurks in the shadows that is coming.”

Several people spoke of turning to religion, trusting in their faith in God to help them cope with the grief. As Darla Newbold says, “Silent prayers, oceans of tears, fake smiles.”

“I hold on to the scripture that says by the sadness of the countenance, the heart is made better (Ecc.7:3),” says Ellen Steele Hunt. “Yes, we all grieve—for what could have been, for not making different decisions, for the future. As believers, we go to God, who understands all about us and said He would never ask us to carry more than we could and promised to never leave us or forsake us. We ‘handle it’ by giving it to Him and know that, ‘All things work together for our good.’”

Some look beyond this life. “I have a hope of an eternal future free of HD … but these grief processes are part of this present life I have been given,” says Sandra Gann.

Others say that medication helps. “To be honest, the only way I get through my grief and keep going day to day … medication,” says Cameron Wedge Howard. “I am on a lot of medication, and it works.”

For some, a healthy lifestyle is a way of coping. “Because I was diagnosed while still able to do research,” says Sandra Gann, “I have come to the conclusion that the healthier a family is in their lifestyle in general through proper nutrition, exercise, and spiritual and emotional health, the more likely the onset will be delayed.”

Some find creative outlets to help them cope.

“I’ve reached a point where my usual way of coping may not be working anymore,” says Melissa Dilley, “so I’m exploring new hobbies promoting mindfulness.”

“Writing and talking help,” says Peter Lehndorff. “I also found that if I was avoiding going someplace that reminded me of Kathy, I went there right away. The deliberate, intentional reminders make me feel a little stronger than having surprises.”

Others also find comfort in holding on to good memories. “HD has taken away the man that I married 37 years ago,” says Linda Warren Tew. “Every day, I see him fading away … I hold on to the memories of the past years.”

For many, special occasions and memories bring sadness, and understanding that this will happen helps them to cope. “Behind every happy celebration or occasion, there is always a sadness in my heart,” says Paula Baker, who lost her daughter to JHD. “My daughter should be here to share it, too. A work colleague who lost her husband in an accident said to me, ‘The black hole will always remain, but in time we build around it.’ It helped me understand grief will always be a part of my life now and part of who I am. I have to accept that.”

Some people have found that looking beyond themselves to the HD/JHD community and to advocacy, connecting with others who are traveling the same journey, helps them to cope.

“I lost my dad to HD when I was 30 years old and 18 days away from giving birth to my second child,” says Jessi Guz. “The planning for the funeral was a challenge, and I experienced several pregnancy-related symptoms due to stress (false labor, major ligament pain). Because I had a new baby so shortly after my father’s death (and a two-year-old at home), I feel like I didn’t grieve. Instead, I was extremely busy in life. Other major life events took place after my dad passed, and I always missed him, but I didn’t feel as if I was grieving. I remember crying when I had to pick out a Father’s Day card for my husband (three months after my dad passed) and remembering that I would never give him a Father’s Day present again. However, I now consider myself an HD advocate and hope to begin HD support in my area sometime in the future (I am currently earning my master’s in counseling now!).”

One man spoke anonymously about coping with the grief over his wife’s diagnosis. “I got the devastating news that my wife of 27 years has HD, and my 20-year-old also. Not sure about my 19- and 12-year-old daughters, but HD has been a blessing as well because I have you and our HD community that can truly relate to the life of living with HD, unlike someone being sick with cancer, then passing in a year or two. Please don’t take that the wrong way, but every day is a blessing, so if I can share from my life experience and touch or change one person’s life for the positive and stay humble, well, that’s what turns my clock.”s

Kevin Jess shared his journey toward coping with his grief: “Life began a downhill slide that brought us to 2017, when [my wife] was in end stage HD and was hospitalized. The nurses told me she was palliative, and my knees buckled. All strength left me, and to have to tell our children was something I simply didn’t want to face. To utter the words took everything I had, and I broke many times. I didn’t leave her side for about three months, other than to eat and shower. I was told on five occasions during that time that death was imminent, and each time, it was a repeat of all-consuming emotion. I was also angry this was happening to us. Again, I ignored my grief at first, but my employer put me off for compassionate leave. In order to do this, they required a care plan for me which included a psychologist. I went for several sessions to simply talk. It was during this time that I decided to video what was happening to my wife. The visits to the therapist didn’t seem to help me at all, so I decided that I would begin to post very personal videos. The support I received after posting them was unbelievable. Sheila had never wanted to go public with her condition previously, but she gave me permission to do it. The outpouring of support was what really seemed to help with coping with the grief. People seemed honestly shocked and, yes, saddened by what they were seeing, but they cheered her on, and it gave me hope. Hope is what has kept me going over the last few months. So I was happy that WeHaveAFace agreed to declare August as International Month of Hope, which will be ongoing every year. They announced it on July 23, with a special video production. Hope, activism, and teaching were what brought me to a good place today. As you know, my wife is improving rather than declining now, but I know that the inevitable will eventually happen, but my supports are in place now. I will grieve her complete loss, but I will celebrate her through hope for the next generation.”

Grief, in all its messiness, is one of the threads that connects us as a community.

“There is a tremendous amount of grief in the community,” says one woman who tested negative for the gene expansion. “It sits very heavily just under the surface in both people that carry the mutation and those that do not. I did not even know that HD was in my family. Yet, the circumstances in my life that were due to this unnamed disease brought a powerful grief to me that would burst forward at unexpected moments. Sometimes, in public, it would be embarrassing to suddenly be in tears in the grocery store without knowing why I would be suddenly overcome with emotion. I consider grief to be one aspect of the PTSD [Post-Traumatic Syndrome] that seems to be a big part of growing up in a family affected by Huntington’s disease.”

A very special thank you to all of the HD/JHD community members who contributed to this series.

Wishing you great peace and comfort!

If you missed yesterday’s interview with pediatric hospice nurse and certified grief counselor Lanise Shortell, you can listen to it in Help 4 HD Live!’s BlogTalkRadio archives: http://tobtr.com/10151811.

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

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The Grief of Huntington’s Disease, Part 3

The Grief of Huntington’s Disease, Part 3

by Sharon McClellan Thomason

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, www.elizz.com, 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.” (https://elizz.com/caregiver-resources/just-for-caregivers/types-of-grief-and-loss)

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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The Grief of Huntington’s Disease, Part 2

The Grief of Huntington’s Disease, Part 2

by Sharon McClellan Thomason

Grief is not a one-size-fits-all tidy little package that fits neatly into a box to be stored away. Not everyone grieves in the same way or on the same time schedule. There are as many ways to grieve as there are people, and there is no right or wrong way to grieve.

Anticipatory grief is sometimes referred to as ambiguous loss or ambiguous grief. Some universities, like Indiana University, teach whole courses about grief. In a class lecture for a course entitled “Grief in a Family Context,” published online, Dr. Kathleen R. Gilbert discusses ambiguous loss and disenfranchised grief:

Because of the lack of social recognition, disenfranchised grief is a hidden grief and this “hiddenness” can paradoxically increase the reaction to loss. There can be an intensify [sic] emotional reactions. It can intensify feelings of anger, guilt and/or powerlessness, thus resulting in a more complicated grief response. Rituals may be absent, or the grievers may be excluded from rituals. The reduced or absent social support promotes a sense of generalized isolation on the part of the griever. (http://www.indiana.edu/~famlygrf/units/ambiguous.html)

“I grieve that all my plans of growing old with my wife were cancelled,” says Michael White. “I have had a lot of grief that my three boys may have it. Some of that grief left me when two of them so far have tested negative.”

But for White, the grief extends beyond family. “I have grief that the God I once believed and trusted in allowed this disease to happen. To me, grief is a heavy burden to bear, weighing me down and taking away the man that I used to be.”

For some, particularly those who are new to HD/JHD, grief begins not with diagnosis, but as symptoms become apparent.

“The first time was back in 1999, when the words Huntington’s Disease first came into our life,” says Kevin Jess, “and it was when I realized that my wife was symptomatic. She was unaware, but it was evident. I felt a feeling of impending doom. Eventually, grieving for her became the norm. I realized that I was indeed grieving even though she was still here. Some of it was selfish. I was grieving for what I was losing, as she was such a force in my life. I can’t remember life before Sheila. I was 18 when I was married, and she was the force that made us successful.”

Loss of “self” and loss of the relationship you once had are common themes among those grieving the loss of someone to HD or JHD.

“For me, the grieving began when dementia and psychosis set in, because Mr. HD is not the man I married,” says Carol Conolon. “Mr. HD has replaced a kind and generous and loving family man who loved life itself and now is the shell of the man he once used to be, and this man has an ugly soul. He no longer cares about his family, let alone any friends. So I grieve not only for the man, the husband, the father, but I grieve for the closeness, the intimacy, and the love we used to share. I grieve for the life I used to have with him as well as family and friends which are no longer a part of my life. I grieve for the peace and tranquility of a life I used to have without living in daily fear, and lastly, I grieve for the freedom to come and go whenever it suited me, and now I pray for the time when it’s time for full-time in-home care so my life will be returned.”

“I grieve what Dave has lost and is losing,” says Darla Newbold. “I grieve that our marriage is no longer 100%, 100% but 175%, 25%. I grieve [that] I have to fill [the] shoes of protector, anger management, counselor. I’m more mom than wife, more nurse than wife.”

Often, the grief centers around the fear of losses that are sure to come, losses that occur along the way, after diagnosis, but before death.

“Before my husband received his diagnosis,” says Kimberly Elizabeth Gordon, “we already pretty much knew he had it, but when the doctor told us … it felt like the wind was knocked out of me. I started imagining the grandchildren he won’t see, us not becoming world travelers after our kids move out, him not being around to walk our daughter down the aisle one day, and realizing when he passes, my son might still be a teenager.”

And often, with grief comes anger. “The grief starts early when dementia sets in, and you have lost the companionship,” says Peter Lehndorff, who recently lost his wife to HD. “There can also be an element of anger, too. Early on, when Kathy was irritable, angry, and downright abusive, she wasn’t willing to talk to anyone about HD or medication. That made me feel angry at her and at myself.”

Anger extends to other family members, too. Another man who is losing his wife to HD says, “When Christie’s sister called me and told me I needed to have her tested for Huntington disease, that it is a terminal condition, I was in total shock. I had never heard of it before. I got her an appointment with a doctor as soon as I could. Her oldest son went with us for the test results, I was so upset I couldn’t even drive us home when I found out she had it. The doctor told me I needed to start making arrangements, that I was going to lose her. I was in denial of losing my wife, and I was in a panic. She never realized exactly what the doctor told us. I cried for months over her illness and the fact that I was going to soon lose the only woman I ever wanted to marry Sometimes, I sit beside her as she is sleeping, and I wonder if she is going to take her last breath, I grieve over the fact that I can’t do anything to help her, I am supposed to take care of her and protect her, but I am helpless in this situation, I have fought this battle along with her for about 26 years now. I have been through misery, sitting with her at night and all day with no rest and doing it by myself, I have seen her as she slowly became a little baby all over again in an adult’s body. No one has offered me any support except for the Huntington’s support groups. I still grieve every day, not only for her, but also for every Huntington’s disease patient. I have seen what it does to a person, robbing them of everything they had before they got sick. Family members turn their backs on them because they are sick and helpless. It grieves me that it happens, but it does.”

Tomorrow’s installment of this article focuses on the grief felt by those who have HD, complicated grief, and the grief that accompanies survivor’s guilt.

Tune in tomorrow to “Help 4 HD Live!” on BlogTalkRadio to hear a discussion of grief with pediatric hospice nurse and certified grief recovery specialist Lanise Shortell. The show airs live at 4 p.m. ET/1 p.m. PT.

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

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The Grief of Huntington’s Disease

The Grief of Huntington’s Disease, Part 1

by Sharon McClellan Thomason

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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