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  • Writer's pictureSharon McClellan Thomason

The Grief of Huntington’s Disease, Conclusion

How does one even begin to cope with the depths of such all-encompassing grief? 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:

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

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