Sunday, February 17, 2008


I would like to share to you a story about a wife and her husband. I got this true story from a book, ripples of joy, which was given to me by my brother. Reading it did inspire me and touched my heart.

I am a caregiver. My forty-year-old husband, David, has a little known genetic disease called Huntington’s disease. He can do almost nothing for himself.
I can tell you that caregivers experience a wide range of emotions, depending on the largely upon the person whom we are caring. Lately, I have to admit; I’ve been feeling there’s really no reward for what I am doing.

David has difficulty feeding for himself, and swallowing is accomplished only with great deal of effort. One day, with more food landing on his shirt than in his mouth, David and I were going through the usual “ change the shirt” game.

“David lift up your arms,” I pleaded. And then, “if you do, we can go and have ice cream.”
David’s garbled speech made his response to my urging impossible to comprehend. I did figure out, however, that he had no intention of lifting his arms or cooperating as I changed his shirt.

I felt myself tense up, and I sighed in frustration. I didn’t need this today. Try as I would, I simply couldn’t understand what he was saying. And we weren’t moving any near our goal-getting him into a clean shirt.

‘David,” I finally said, “my job is to feed you, make sure you take your medications, and help your doctors and nurses. Your job is to help me help you. You need to lift your arms, please.”
With an endearing smile so like that of the man I had married before the ravages of Huntington’s disease took him away, David said, “No. My job is to say ‘I love you’ in as clear voice as possible.”

Care giving is not something I would ever choose to do. Imagine most people would not choose what is usually an almost thankless job-especially without pay. Still, there are rewards. Remembering David’s smile and his comment about his “job” is a nice memory I can pull out on days when things get really tough. We all have our Jobs, and David’s job is to say, “I love you.”
David, I love you too.

1 comment:

Carol D. O'Dell said...

Your words as a caregiver resonate with me.

I cared for my mom who had Parkinson's and Alzheimer's for over 15 years, the last three of those years in my home--sandwiched between my mom, my kids, my marriage, and the remnants of my former life.

Still, it's even more profound when it's your partner. We need and expect so much from the person who was our equal, the one who shouldered life with us.

Like you, I don't think I would willingly sign up for caregiving, but I did find many unexpected blessings along the way--I learned how much resiliency I had--(fancy word for how much I could take), and I found that my family really stepped up and cared for each other.

I wrote every day--a journal, catharsis for the soul. I wanted and needed to capture this journey and how I learned to laugh, and scream, and stand up for what I believed was right.

I learned to dig into a deep resolve and forge my way through--even the dark nights of the soul.

I know how isolated caregiving can be--the online community of blogs and forums can really help. You need to vent every once in a while to someone who understands and has been there.

~Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir
available on Amazon