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Ask Amy: Should elderly grandparents be told of grandson's ALS?

  • Article by: AMY DICKINSON
  • May 1, 2013 - 2:04 PM

Dear Amy: My son, who is in his early 30s, has been diagnosed with amyotrophic lateral sclerosis, which is a terminal illness. Many people know about his illness, but my parents do not know. They can see that he is not well since his body is losing many functions.

My parents observe these symptoms, but now that we have a definite diagnosis we worry about informing my parents about their grandson. They have asked me if he will ever get better, but I didn’t give them a yes-or-no answer.

My parents are in their 80s, and although very mentally “with it,” their physical health is not great, and they tend to get upset easily and take bad information very hard. Recently my mother landed in the hospital with an anxiety attack.

They are also not easy to fool. They suspect people try to keep bad news from them and are very alert to all that happens around them.

I think we should relate the unfortunate diagnosis. Others in the family believe that, by informing them of a terminal diagnosis, we are not only taking away any hope from them, but opening the possibility of a very negative medical impact on them.

I am also concerned that someday someone may slip or my parents may find out on their own, so I feel that it is best to tell them.

Should we just proceed as we have been doing and not say anything, or should we tell them — and if so, how?

Amy says: My thoughts are with you and your son. You don’t say what he wants to do, but you should do what is best for him — and for you. If your son tells you he doesn’t have the strength to deal with his grandparents’ stress, then absolutely shield him from it.

However, I believe that most people are able to adjust to a tough outcome if they know the truth but also have a positive function to perform. In your case, you might say, “Steve has ALS. He is heading down a very challenging road because this is a progressive disease. He will do best if he has our love and support and a positive attitude. Can you help by accepting this, not worrying too much and cheering him on?”

Send questions via e-mail to Amy Dickinson at askamy@tribune.com.

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