If you could do just one thing today, what would it be?
Just one. Not the dry cleaning AND the grocery store. Not cooking AND eating with your family. One activity only.
What would you chose?
That is where we were this summer. As Alicia’s illness progressed, hospice suggested we try and marshal Alicia’s energy around a single positive activity each day.
One day that special activity was a shower.
You may not think of bathing as an activity, but for a seriously ill person it is. I remember when my friend Jill was so ill, the hospice nurse reminded us to give Jill a chance to rest after the bathroom or shower.
Once day we took Alicia for Homespun frozen yogurt. Eating was increasingly difficult; but she enjoyed frozen yogurt. Another day it was a massage. Sabrina found someone with special skills–the only parts that didn’t hurt were Alicia’s limbs and head. So Sabrina got Alicia some loose shorts so she wouldn’t have to worry about clothes. One day the special activity was speaking with a chaplain, yet another it was going to get medical marijuana. Unfortunately it didn’t help help her.
“Can we go out for omelets?” Alicia asked on July 10.
So what if the rest of us had already eaten? In a flash we were off to Sterling Cafe–Sabrina, Quinton, Prestin, me and Alicia–all of us too aware that this might well be our last breakfast together.
Alicia ordered the world–steak and eggs, a fruit cup, AND an apple crepe with whipped cream–confident that her sons Prestin and Quinton would eat it, even if she couldn’t.
Her boys knew it what was happening and were very present with her, and family is where the we tried to keep the focus. Her friends were lovely, delivering food every day, but increasingly she had no energy for casual conversation. Once the principal at Antelope Crossing Middle school dropped by. “That’s my boss,!” she whispered urgently as he came in. She managed to smile and have a near normal conversation for maybe three minutes.
After that three minute conversation Alicia slept for six hours.
“What can I do for you?” Sabrina asked Alicia several times every day. I’m proud of how we pulled together and did everything possible to help make her time as pleasant as possible.
Toward the end Sari Trunk, the director of nursing from Bristol Hospice, came for a visit. Alicia was resting quietly in her bed, seemingly unaware. The rest of us were exhausted, and ever uncertain if we were doing the right things.
“Of all the people we are serving at this stage of life,” said Sari Trunk, “your sister is the most comfortable.” Wow.
I’m proud of the way we pulled together and helped her. Any time we needed something–a home for her dogs, an errand, emergency supplies–everything got taken care of. Everything was right.
Everything except for the ending.