When ALS hits close to home

A few months ago my cousin Linda* called to tell me about a mutual friend who has been diagnosed with ALS (amyotrophic lateral sclerosis), otherwise known as Lou Gehrig's Disease. I was surprised. Matt* is 68 and his wife, Amy,* is much younger. I only know him casually and he is a nice fellow.

He was friends with Linda's husband. They saw each other frequently for a time. When Matt and his wife moved 20 miles away, Linda and her husband lost contact with them. Because of the distance between their homes, Linda told me they could no longer make the trip, have a few drinks and return home because they did not want to drink and drive. So their visits ended. Matt had been having physical problems for some time, but was only diagnosed recently.

Linda seemed detached when she talked about Matt. She told me Amy was getting along okay. Linda wondered why Amy was not crying all the time. I told her Amy would need to stay focused and keep her emotions under control to help Matt. Amy wanted to help Matt enjoy his good days.

But ALS is taking away his ability to move and see. We both wondered what life was like at their house now. I could visualize Matt sitting in his chair unable to do little for himself.

During our conversation Linda said Amy will care for Matt until a decision has to be made. At first I thought Amy was considering a nursing home for Matt. But the inflection in Linda's voice was more deliberate.

It sounded like Amy and Matt had discussed suicide as his way out of a painful disease. I know she has to be overwhelmed by watching her husband get weaker day by day.

Linda and I know Amy will need a home health aide to assist her with Matt's care. Amy is also running her husband's business, and will need to continue to keep it solvent.

Linda seemed resigned to the whole situation. She understands that Matt does not want to just exist. I understand why he feels suicide is better than the fate that awaits him.

I researched ALS when I heard the news about Matt. They have a difficult road ahead. If I was caring for a loved one with this disease, I hope I would be as strong as Amy.

Linda asked if I would send a card to Matt. I make "snail mail" black and white cards on my computer. I made one for Matt, but I did not send him a nessage inside. Instead, I put a peaceful photo on it and "Thinking of you" which, I hope, relayed my feelings.

*Linda, Matt and Amy are pseudonyms.

Topics: Clinical , Executive Leadership