Post Tom: Day One

A huge THANK-YOU for the outpouring of sympathy and love that came my way yesterday. Tom's illness and death was not sudden; his path was clear back in early April when the nature and magnitude of his many diseases was made evident. And really, the roots of this go back to 2012 when his health first became an issue, and 2016 when mom began to fail.

What has been hard is carrying this quietly, at Tom's request. Through three stays at Beth Israel Deaconness Hospital in Boston, two frantic days of multiple ambulance rides and long waits in the ER, dozens of trips north to support Tom in the hospital and at home, to clean and declutter his home so that he could return there, to ferry him to and from dialysis. It's become the new normal for us, and we're a bit relieved to have our lives back. Many of our close friends were in the loop, but this has come as a shock to many friends and family, and especially to Tom's social network, who were as recently as Sunday commenting that "you've got this, buddy" and "sending prayers for a speedy recovery" (apparently not really understanding the nature of the word "hospice")

When hospice was finally forced upon him (dialysis was no longer effective) he went grudgingly. We worked to set up his room with his memories and familiar gadgets, and we committed to be with him 24/7 because he was not a good patient, refused to stay in bed, and was a serious risk for a fall which might have taken him back to the hospital. Better us to stay with him than to find himself in restraints.

This has taken a toll on all of us, as well as our families, partners and communities who have generously given us time, space, and resources to care for Tom in ways that perhaps many would have stepped back from. So in a lot of ways we're collectively catching our breaths, sighing in relief that none of us were taken down through this process.

We're still trying to figure out what's next. Tom has amassed a lifetime of memories and collections in two small rooms that he refused to let us touch or deal with - we'll be peeling all that apart in the coming weeks. Perhaps our first shock and sadness came in seeing how he had been living, and over the past months we'd shake our heads at new discoveries at just how dysfunctional his life had become, with dozens of picked up but never used prescriptions, a decade of unopened mail, unpaid bills, piles of non-functioning technology and appliances.

Even as we hold in our hearts the memory of the vibrant and much-loved child that came into our lives through adoption back in 1967, we also struggle with the problematic adult he had become, and are grateful that his illness did not end up causing harm to others. There were so many ways this could have gone very badly wrong.