Thursday, August 27, 2009

Imagining a world without Huntington's

Today I write with the raw emotion of a son on the verge of losing his father and yearning for a world without Huntington’s disease.

I want peace for him and for me. I fear for his life, and I wearily mourn his struggles to keep going in life against great odds during the last two decades.

My father, who turns 82 on October 1, broke his femur last Thursday, August 20, after he fell in his room at an assisted living facility back in my Midwestern hometown. Steadily losing weight and refusing to eat enough since he went into the facility last fall, today he was transferred from a hospital to a nursing home. In April he had suffered an apparent stroke that has left him unable to say more than a few phrases.

My father was a Huntington’s disease warrior, a flawed but courageous man who cared for my mother from the early 1990s until she went into a nursing home in mid-2005.

Painful memories

Now, like her, he needs a feeding tube to keep going. But the doctors fear that he would not survive the operation to implant the tube. According to his living will, he doesn’t want one anyway. About a year after my mother’s death from HD in February 2006, he gave up on life and started a downward spiral into dementia and immobility.

The bad news reminded me of the difficult decision he, my sister, and I made to decline a feeding tube for my mother and let her die under the care of hospice workers.

The past week I have felt as if I were drowning, unable to come up for air in a whirlpool of emotions sucking me down into my own eventual hell with Huntington’s disease. I tested positive ten years ago this summer and am now at the age where the onset of symptoms is typical.

I am angry and frustrated, because without HD life would be so different for me, my wife, and our nine-year-old daughter.

I know that I can’t blame all my difficulties on HD, but it has indubitably taken a massive toll on our ability to lead a normal life, with moments of calm.

Life is moving so fast, and with HD to worry about, it seems to race ahead even faster.

Fantasies of a better life

What would our lives be like without HD?

Like the phrase “imagining a world without Huntington’s,” which I put on the website that I manage for the San Diego chapter of the Huntington’s Disease Society of America, I spent a part of the last few days fantasizing about my family’s life in the absence of HD.

It seemed to be the only way to escape the overwhelming sadness.

My mother, who would be 71 years old today and on track to live close to 90 like her mother, is my father’s stalwart companion, keeping him active, optimistic, and loved as he heads for his mid-80s.

They travel together frequently. On their 50th anniversary in 2008, they realized a lifelong dream of visiting Europe. My dad took her to many of the places he saw as a young soldier in the 1950s, and they visited his father’s birthplace in Eastern Europe.

Gathering around the pool

Today they are gathered around our brand new swimming pool. My dad never learned to swim and was always afraid of the water, but we are going to coax him to try out the spa. He thoroughly enjoys shooting video of his granddaughter splashing in the pool.

My mom smiles beautifully as she plays with her granddaughter in the water. She was the swimmer in the family and took me to my first swimming lessons at the neighborhood pool. Grandma has taught her granddaughter how to sew, and tomorrow the two of them will join my wife to shop for maternity clothes at a local mall.

Yes, we finally decided to have that second child that my wife wanted for so long. Grandma and Grandpa are beaming with pride and already making plans for driving cross-country again just after the birth to help us out for a few months as they reside in our guest room.

They wanted us to have kids so badly, and now they can’t get enough of our daughter.

While the women are shopping, my dad and I will head for the driving range and knock around a few balls, just as we did when he first taught me how to swing a club in the backyard, making me the first kid golfer in the neighborhood.

I am barbecuing burgers the same way my parents used to on their gas grill during the humid Midwestern summers. We reminisce about how we used to top them with tomatoes just picked from my dad’s beloved garden.

Words of appreciation

After dinner we are going to look at family pictures and tell stories to our daughter, who is now so curious about her grandparents’ past.

While my wife puts her to bed, I am going to chat in the living room with them.

Tonight I especially want to tell them how much I appreciate what they did for me, raising me, tolerating me in my bad moments, helping put me through college. Only after becoming a parent myself did I come to have a true understanding of their importance and sacrifice.

It feels great to connect with them. Their lives are complete as the cycle of life continues. We even joke about their good chances of becoming great-grandparents….

It’s like one of those good dreams that seem so real, so inspiring, so perfect – but, for us, impossible.


♥Jennette♥ said...

Thanks so much for sharing,I also live at risk of H.D and i find everyday to be a challenge!

Anonymous said...

I had similar dreams and fantasies of my pretend "HD-free" family. Well written. I pray for you and your family. I am at risk, and lost two siblings and my mother. You do good work.

Anonymous said...

I read all entries and this one really hit home. I too dream of a life where HD is not in my family. How different things would be. It really saddens me that my brother will never have a family like the rest of his sibblings. How my mother has become his full time caregiver. We do the best we can! I pray for everyone affected by HD.

Anonymous said...

This my first time reading your blog. I an 48. Have lost Grandmother, dad, baby brother, twin brother, sister, aunts and uncles to HD. It is still showing up in my family in younger family members. Finding a support group and learning to be involved is saving me, Was drowning for years in confusion, depression, guilt, you name it I have felt it. My family ( what is left has not and does not discuss it). FEAR has gripped us for decades. Living at risk, do not know, and do not want to know my status. Feel healthy. Pray I am HD free. Thank you for being so brave and putting your struggle into words, as I cannot.

Angie said...

so, today I learned that my father suffers from HD which, as you know, puts me at a 50% risk of having it too. The first thing I said to my husband was "If I had known that 4 years ago, I would have never gotten pregnant". Knowingly and willingly passing this 50% risk on to my children would be something I could not live with, because, like you, my dream is a world without HD. How did you guys come to terms with the decision to not only have one, but two children? Thanks!