You Can't Do It Alone by Maria Quiban Whitesell

Author:Maria Quiban Whitesell [QUIBAN WHITESELL, MARIA / SCHNEIDER, LAUREN, LCSW]
Language: eng
Format: epub
Publisher: Hachette Books
Published: 2020-06-09T00:00:00+00:00

The day we received word from Dr. Cloughesy that there was nothing else he could recommend for Sean, we knew we had run out of options.

As we had done at each critical juncture in the past, we decided to weigh all the options and make a decision together. We scheduled palliative care in an attempt to stay ahead of the impending deficits, and three weeks later we ordered hospice care. We were fortunate to live near Sean’s doctors, so it was a godsend that Dr. Cloughesy was able to stop by to check on Sean one last time. It was now December, not a particularly easy time to navigate a couple of magical milestones for Gus, so it helped to talk over the timeline with Dr. Cloughesy. With Gus’s fifth birthday and Christmas coming up, we had the difficult discussion about when he thought Sean would enter the transition phase and then death.

Sean had not been eating much at all, maybe a few spoonfuls of baby applesauce or cereal a day. He was getting an IV hydration drip with vitamins that helped him tremendously, but in my heart I knew he was getting more and more tired. When Dr. Cloughesy came over that December day, Sean managed to open his eyes and respond a bit before closing his eyes again and falling asleep. He was asleep much more than awake. Sean didn’t look sick, though, and Dr. Cloughesy commented on how good he looked, especially his face with his smooth and supple skin.

Dr. Cloughesy left that day knowing that it would probably be the last time he saw Sean. He thought we could keep him with us through Christmas, but not the New Year.

So that’s what we did. I sent another “Sean Update” email to our friends and family to let them know that we had reached this point and that the time for visits was past. I share this email message with you in hopes that it may give you the strength to ask for exactly what you need from those closest to you at this time in your journey:

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