How Do You Say Goodbye To Your Twelve Year-Old Son?

My conversations with Mary Beth of late have focused on whether it is time to invite hospice into her journey. I’ve written about Mary Beth over the last three years I’ve been visiting her each week. She has ALS and is approaching the end of her travail. Her lung capacity has dropped below 25% which contributes to her diminishing ability to not only breathe but to talk.

When we met Wednesday at our regular time, in the shelter of large trees that offer a bit of shade on a warm morning, she suggested it is time to contact hospice.  But before doing so she wants to discuss this decision with her twelve year-old son Nico.  Mary Beth knows he has feelings about her illness as well as her pending death, but it is difficult for him to speak about them with her. She hopes a conversation about hospice will give him a chance to express his concerns, his fears. I offered to join them for that conversation.

Two days later, Mary Beth called and asked if I were available to talk with Nico. I told her I’d be there in twenty minutes. I found her in her wheelchair in her bedroom with her much loved neighbor Luisa who happens to be a nurse. Mary Beth had had a difficult day with much labored breathing. She called hospice earlier and was told someone would be in touch to schedule a visit. After Luisa left I got Nico from his room, telling him his mother wanted to talk with him. He settled on her hospital bed adjacent to a wall of photos of him and his mother. I sat on a chair next to him.

I shared with him my experience working with hospice, explaining the services they provide and how his mother would benefit from increased support at this time. The conversation unfolded with Mary Beth commenting and asking questions as I added relevant information. I listened carefully to Mary Beth who was at once remarkably loving and generous toward her son as she spoke openly about how hospice marks the beginning of the final chapter of this journey for her. She said it could be a matter of months or it could be a matter of weeks before she dies. She encouraged Nico to ask for what he needs along the way. Does he want to meet with hospice folks when they come? Does he have questions about his past that his mother would be able to answer? She reminded him of the many friends who know her well and could answer questions he may have in the future.

Although he expressed little during our conversation, the hug Nico gave me when I first came to his room and the wave he gave me as I was departing, suggest he knows we are soon to experience a painful loss. How do you say goodbye to your twelve year-old son? You really can’t.

— Curtis Grindahl
Client Services Coordinato