You Pay the Higher Cost

Caregivers of people with Huntington’s disease often feel lonely, even when they’re with their loved ones. Sharon Quigley uses poetry to express the loneliness she feels even when she’s with her husband, Ken. While recognizing that the disease is much more costly for the person with HD, she knows that Huntington’s affects both the caregiver and the person with HD.

I wish that there was more of you
 Just like there used to be,
 But now I feel so lonely
 Even when you’re next to me.
 

I look so deep into your eyes
 And it looks like you are lost,
 I know between the two of us, 
 You pay the higher cost.
 

Remember times we’d sit and talk
 Of some current world affair?
 Now when I try to speak to you
 All I get is your despair.
 

We used to sit along the beach
 And watch the world go by
 We’d live forever, you and I,
 Never thinking we would die.
 

Many years have come and gone
 And still our love is strong
 But I don’t feel you here with me,
 Something is very wrong.
 

Now when we sit and watch tv
 I feel a chill and frost
 I know between the two of us, 
 You pay the higher cost.
 

So many times, I feel alone
 And yet, there you sit.
 I wish that there was more of you
 I miss your charm and wit.
 

The disease, you see, affects us both.
 At times, we are both lost,
 But I know between the two of us, 
 You pay the higher cost.