Thursday, September 16, 2010

soapbox moment: care

Hi, craftosphere.  I'm home.  From where?

Two funerals in three weeks.

First, my husband's grandmother.

Second, my father.

Both of them had been ill for a long time.  Both of them were suffering.  Both of them were believers in Christ, as I am, and are now free in heaven, with new bodies, healed and happy.

The rest of us are a little worse for wear.  We're happy for them both, peaceful of heart, but very very tired.

I want to say a couple of things about Huntington's disease, from which my dad suffered for almost 10 years.  Now that it's all over, I feel like I can talk about it publicly without being disrespectful of his desire for normalcy, his desire to live life to the fullest, to not be characterized by the disease.  He was an incredible man, an upright man, a model of Godly character and courage.  He was NOT defined by this disease.  But since so few know about it, I have a few words to say.

First of all, Huntington's disease is ugly, really really really ugly, and not a novelty.

You see it in the media, like with Thirteen on "House", or in a Harlan Coben novel, or if you've been around a long time, you might know it as Woody Guthrie's disease.

Don't be fooled into thinking it's cool.  If you have HD, then people often think you are drunk or mentally handicapped.  You fall a lot.  You can't drive, or shouldn't.  You can hardly work.  You possibly passed it on to your kids, and for this, you feel really really guilty.  Your personality changes so gradually that people don't always know that you've lost your ability to reason properly.  You sometimes are belligerent and cruel to the ones you love, and even when you aren't, your movements are so violent that you bruise and batter them unintentionally.  You slowly starve to death.  You are at risk for choking.  You know that there's no cure.

There's no cure.

There's only care.

But care isn't popular.  Care doesn't get big budget benefits and black tie galas.  Care doesn't get media attention.  Care doesn't get donations.

Care takes commitment from the family.  It takes unbelievable financial, physical, and spiritual resources.  Care is expensive in every way imaginable.  Care suffers quietly, anonymously.

Caring for someone at home is the most exhausting, the most demanding, the most noble and loving thing a person can do for another.  Even the most well-equipped nursing home can rarely handle a HD patient, so my mom cared for dad at home.  She loved him like nothing I have ever seen before, and she gave of herself every minute of every day, all for him.  Sacrificial love.  Up until the very last breath.

Why am I telling you all of this?  You came here to read about knitting and sewing.

Because you probably know someone quietly suffering, taking care of a loved one at home.  Maybe it's your grandma taking care of grandpa.  Maybe it's your next door neighbor with her handicapped child.  Maybe you actually know someone with Huntington's disease (unlikely, but if you do I'd like to know).  If any of the above rings a bell, and someone is now in your mind, then REACH OUT TO THEM.  They need your help.  They are TOO BUSY TO ASK FOR HELP.  You can give them a little bit of courage by a simple meal, card, ride, phone call, email, mow, errand, visit.

Care.  Focus on care.  Do what the big-budget galas can't do.

For those who reached out to me and my family during this dark turmoil of the last 10 years, thank you.  You were ministers of grace.  You were Christ in action.

As for the future?  I'm at risk for HD.  I'm not going to be tested, although I plan to enroll in some medical studies.

But, as my dad said, I'm not going to base my life on an "if."  I'm going to LIVE.

Time to sew.
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  1. Amy you are so correct in saying that caring is an unselfish thing. My husband spent 8 1/2 months helping me get through colon cancer. He is my angel-I call him Mr Handsome-we had our 30th wedding aniversary in August and I love him more than ever.

    We have a lady in our church with huntingtons. She is a precious person and her husband is a mighty man.

    Thank you for the post and encouraging all of us to give to those who spend time caring for others in need. Thank you for caring also.

  2. Thank you for talking so openly about HD. I have experienced it first hand. God Bless.


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