At a hospice facility for children, a long goodbye is made a little less lonely

He was two generations removed from the boy in the bed, a weary young grandchild who had not fully awakened in days, and who in truth would not wake again.

He would linger, silently, anywhere but the bedside — his oversize, calloused hands stuffed in the front pockets of his jeans. Then, unmoored, he would drift away, down the hall, outside, anywhere else.

This all took place in Phoenix at a place called Ryan House, which is one of two freestanding inpatient pediatric hospice and respite facilities in the United States. The country might not need many facilities like this, but palliative care specialists say the country needs a lot more than two.

Anyway. The man.

He was the patriarch of this huge family that buzzed around the facility every day the boy was there. The staff knew the grandfather as a man of few words, and they also sensed how seriously he took his role as leader and protector. And now here he stood, powerless to help anyone, not least the boy who was struggling to die.

This happens with younger people, hospice workers say. A disease can ravage their body, but their heart and other organs are often so strong that they’ll continue after most everything else has shut down, leaving survivors to an agonizingly long and lonely goodbye.

This boy had had an aggressive form of cancer for months, and now he lay in what had become his de facto bedroom, in a facility that was largely given over to his enormous extended family because no one in the clan owned a home big enough to hold them all.

Dr. Kevin Berger works at Ryan House. He’s been involved with pediatric palliative care for 19 years now, and has been at Ryan House for six years. He knew the look of someone who was lost.

Berger asked someone on staff about the grandfather, looking for some way to reach him. The older man was a bit of a maestro at the barbecue grill, someone told Berger. He was known far and wide for it. It was a start, Berger thought.

Berger believes Ryan House needs to comprehensively support families, and focus on interventions that help achieve their goals.

As often as not, that means music, play, celebrations, sleepovers with friends in the community room.

“These are meaningful, mindful interventions, as opposed to the traditional medical focus,” Berger said. “You can take a really sad time and make it into something where the family will remember an incredible event before the child’s death, and that’s the focus.”

When the boy with the big family lay dying, the place was quieter, pensive.

It was a Saturday morning when Berger spotted the grandfather walking alone, as usual. Berger caught up to him, used the only thing he had.

“I heard you’re good with a grill,” he said.

The man said he wasn’t bad.

We’ve got two big ones out back, he told him, nodding in the direction of the two dark hulks. Anyone can use them, he said.

It wasn’t much of a conversation. The older man smiled quietly and walked on. Berger returned to work.

Inside the home, the boy labored and the rest of the family passed the time not knowing how to be.

Berger can’t remember for sure when the grandfather reappeared, other than it was afternoon. It would have taken him multiple trips to carry that much food to the grills. Ribs, chops, chicken, pork, beef — in amounts far beyond what the family could possibly eat.

The older man lit the fire and the family sprung to action, prepping food, clearing space, doing their jobs. The smell of barbecue filled the place, filled the boy’s room, as did the sounds of a family mobilized.

When the meal was cooked the family delivered plates to every staff member and thanked them for their support through it all. People lingered late into the evening, chatting with staff, wrapping leftovers.

Berger left, the grandfather left. Only a small few staffers remained.

Those few were still there hours later when, in a darkened room with a moonlit view of two smoldering barbecue grills, a young boy took his leave.