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.