Introduction

In August of 2005 my wife Carolyn was diagnosed with ALS and Fronto-Temporal Dementia. She died in January 2007. During that terrible period the people who helped take care of her had to learn an enormous amount about parts of life that we knew nothing about. The disease itself always seemed one step ahead of us. No matter how hard we tried to keep Carolyn safe, we couldn't do it; and when we found something that would help her communicate, or eat, or move, it would help for a while but eventually it always failed and we had to find something else. In the end we lost the battle as all ALS patients eventually do; but we still think about what we might have done wrong and what else we should have tried.

This is the story of that period, in hopes that it will help someone who has ALS or whose family member has it. I'll tell you what I did and what I came to think was the right thing to do, but I'm not a doctor or a financial expert, so don't take my word for it; ask someone who knows. ALS progresses in many different ways and the person with ALS in your family may take a path that's very different than Carolyn's. The progress toward a cure or even a treatment for ALS is very slow; but treatments for the symptoms like hand, arm, and leg weakness, communications problems, eating problems, or breathing problems happen faster, since other diseases and conditions have similar problems. ALS organizations like "Les Turner ALS" that deal with patients symptoms and helping the families of ALS patients know about new ideas that may have been designed for Alzheimer's or stroke victims that can also work with ALS. Talk to them.

It's now been a year and a half since Carolyn died. I'd like to be able to tell you that the feelings of anger and depression and horror eventually faded and I'm back to the same person I was before all this happened. But I'm not. I never will be. I used to find hospitals and sick people and death frightening. I don't any more. Sick people are people first and sick second, hospitals, for all their similarities to giant corporations or military bases, are full of people trying to help, and death is sometimes a blessing.