Coming together

It’s been a year since my mother died of Huntington’s disease, on February 13, 2006. The call from my sister about her death came in the middle of the night, and two days later my wife, daughter, and I flew to my hometown, some 2,500 miles away, for the wake and funeral.

My mother’s death was not a surprise, because HD had caused her to decline rapidly in those final months. However, after her placement in a nursing home in August of 2005, we all had expected her to live at least two or three years more.

It took me nine months, until last October, to resume this blog (see “Mourning Mom”). Seeing my mother in a casket and facing my own situation as gene-positive for HD, I became emotionally paralyzed. Slowly, I have reengaged with my writing on HD.

A father’s visit

Now is an especially poignant moment. My father is out for a three-week visit. It’s good to have him here, and it’s good for him to be here. But his presence also conjures up difficult moments.

My father talks about my mom every day. Nights alone are especially difficult for him. My dad never cried when I was a child, but now he breaks down every night. Any 79-year-old man would suffer greatly and be frightened after losing a wife of 48 years. But it’s especially hard for my dad because, for 15 years, HD had slowly but steadily caused her to deteriorate mentally and physically. For both of them retired life became a trial to be endured rather than a golden moment to be enjoyed. Instead of taking my mom on a long-planned trip to Europe, he had to start preparing for her death.

My dad likes to talk about how he “robbed the cradle” by marrying a woman ten years younger. “I never thought that she would die first,” he says. She was just 68. I said to him, “You took care of mom for ten years. That’s something few people could have done. How did you do it?” His answer: “Love!”

My dad, a very religious man, feels guilty about having placed her in a nursing home. He really had little choice, because she was falling frequently and had twice injured herself seriously – a broken wrist and a gash on the head that required surgical staples.

I think my mother declined so fast because, despite the breakdown of her cognitive abilities and her inability to speak, she knew she was no longer at home and no longer had the constant support of her spouse. Eating became increasingly difficult for her; that might have been her way of saying goodbye. I try to comfort my dad by reminding him that he took care of her very well for a long time and that he was no longer able to do so.

Bringing us closer

A week before the anniversary, my dad came into my home office sobbing. He immediately picked up the picture of him and my mom that I have sitting on a bookcase. He kissed my mother’s picture and then caressed it. “I do this every night before I go to bed,” he said. “I have the same picture of your mother at home. I pray for your mother every night. And I talk to her.”

I went over to my dad and hugged him. He seemed so small, frail, and vulnerable. This stoical man, a Depression kid who had never been close to his own immigrant father, had a similar distant relationship with me, but now he was reaching out for help. It had taken him many years to hug me when I was a young adult, and even then his hugs were always quick and tentative, ending in a little push away.

But on this night he held on for a long time and caressed my back, crying the whole time. It was the closest I had ever felt to him.

To encourage himself, my dad remembers that he still has me and my sister. “It was because of your mother that I have you,” he says. We are now his lifeline, his final hope.

On February 14, the start of our second year without my mother, I drove him and my daughter to a special place at the ocean that he and my mom had savored twenty years ago, a time when none of us had even heard of Huntington’s disease, let alone imagined the stress and tears it would bring for the whole family. We couldn’t visit my mother’s grave, so my daughter and I threw flowers over a cliff as a way of honoring her. As my dad and I remembered the good memories he and my mother had of this place, he became choked with emotion. Then for a good while we simply enjoyed watching my daughter play on the beach and become fascinated with a sand crab.

The future looms

After one of our meals last week, my dad saw me taking the supplements I hope will delay the onset of my own HD. He has known about my own positive test for HD ever since I had it done in 1999, but he seemed always to go into denial about it and showed no concern, perhaps because he had his own huge burden to carry in watching my mother succumb to HD.

On that night, however, he asked again why I was taking the supplements. I told him that I did not want to become like my mother. (I also reminded him that his granddaughter, 6, is HD-free because we had her tested in the womb.) For the first time he became upset, realizing that I too could die from HD.

HD, in its strange way, has brought my father and me together. Now my goal, as I do my small part along with other HD activists around the world, is to make sure that it never separates me from my own wife and daughter.