Preparing for a lonely day

One of my deepest fears about Huntington’s disease is knowing that there could come a day when my wife cannot take care of me. If I follow in my HD-stricken mother’s footsteps, I will need help starting in my mid-50s. My wife and I have had several conversations about this.

I want to stay home as long as possible. I don’t want to go into a nursing home or similar facility. I have seen HD patients in such conditions, and it frightens me to see how they receive so little attention or stimulation.

At one place I saw a woman belted to a special chair. She writhed uncontrollably. I wonder: “What kind of life is that?”

Other patients lived in cubicles. One had a padded floor on which the patient lay.

I am hoping that caregivers can be hired to take care of me at home. Our insurance would likely cover only part of the costs, so we’re saving to try to cover the difference. But this might be only during the day. Who will take care of me in the evenings?

My wife points out that she will not be able to work full time during the day and then take care of me during the evenings, when she will have to be managing the household and helping our daughter with schoolwork and other things.

The day my wife told me that I’d have to go to a care facility when home care was no longer possible, I felt abandoned and utterly lonely.

Sometimes I tell my wife that I prefer suicide to going into a nursing home. In fact, suicide rates among HD people are higher than average. In a notorious 2002 incident a Georgia mother shot her adult sons, who had advanced HD, to help them escape their misery.

I need to plan now, while I’m healthy, to make sure that I can stay at home as long as possible. I must find professional caregivers who know about HD.

That’s a difficult task, as my family has discovered with my mother. So few people know about HD, and many doctors have never seen a case of it. The lady who cares for my mother a few hours per week mainly bathes her, does her hair and nails, and helps clean the house. She has no HD-specific training and cannot give my mother the physical and psychological stimulation she needs. I am convinced that, if my mother had gotten better help a decade ago when the disease first struck, she would be better off today. Sadly, our health care system fails to train people to work with HD patients.

To me, life is action. I want to be cared for by people who will recognize the remnants of that impulse in me once HD has erased many of my faculties. Struggling with HD is not just about ameliorating symptoms. It’s also about building a support team that can preserve the patient’s humanity as much as possible.