Familiar Places

The past three months, as we have worked through the steep decline and passing of our brother, have been an exercise in becoming very familiar with places, for a short period.

The first, Beth Israel Deaconess Hospital West in the Longwood section of Boston. Tom ended up there back in 2011 or 12 when his liver issues first surfaced, and that's where he ended up this time. He spent 5 weeks there - three weeks (about 1/2 of that time in ICU), a week home, another week back, another week home, a third visit for a week. Then off to hospice.

I grew up in the Boston metroplex and my family has remained there, but I was and am far from a regular visitor to the city - an occasional concert or Red Sox game over the years, maybe once a year in my adulthood. Yet the drive into Boston became almost pedestrian - Mass Pike to I-95 (which I still call Route 128) south, to Rte 9 East, direct int Longwood area. Minorly annoyed by $18 hospital parking (even with validation), I took the T in from Riverside a number of times, and got a parking app for my phone and a Charlie Card for my wallet.

I ended up spending two long days waiting with Tom in the ER for a bed (at the start of visits #2 and #3), and each time he'd be discharged we'd think "good-bye Beth Israel" but it would not be long until we were back.

We got very familiar with the Rosenberg and Farr buildings at the hospital: which door to go in, where we needed to check in, where not, where the best bathrooms were. We ate in the hospital maybe twice before finding far better food in the vicinity - Bon Me, Clover Food Labs, B.Good were all steps away, as was a large food court with less healthy alternatives.

The second place we got familiar with with Tom's apartment. Tom was a drinker, a collector, a borderline hoarder, and had a large collection of firearms - legal to own but not legally or safely stored. He had lived in his place for over 20 years and never really did much cleaning - he had owned ferrets, tropical fish, and (most recently) a cat - so the place was full of dander and fur. We (collectively, all cat allergic) could barely stand to be in there.

Unfortunately, it was the only place Tom considered returning to - so we spent many hours working on his place - cleaning, organizing, trying to make the place safe for Tom (thinking of things like oxygen and walkers) and habitable for help (us, visiting nurses, etc.) We never really succeeded - despite many hours of work on our part and $1000 spent on commercial cleaners, the place has remained almost unbearable to be in up until recently. Tom remained resistant to us cleaning / organizing / tossing stuff. The first night home from his initial hospital stay, he sat in his chair and directed me to go find and replace all the clutter we had moved (in order to have the commercial cleaners in). It was a Sisyphean effort to get the place cleaned up, one that we are only now (three weeks after his death) finishing up.

A minor location was the local dialysis clinic - Tom became a 3x a week patient and needed rides. He stubbornly insisted on driving himself the first time (probably the last time he drove anywhere) and we're lucky he did not kill himself or others. After that we took him. And even though he only went a handful of times (5x total), it was a chore to take him. He really needed to be in a wheelchair, but his apartment (narrow, cluttered, entrance steps) would not support one, nor would his ego. Ride services would not help him from house to car (he needed assistance) or they would transport wheelchair patients only. So we ended up taking him, and at the end it was too much for us (he's not small, and we're getting up there in years) - had the docs not terminated dialysis during his last visit to Beth Israel, we would have insisted he go someplace he could get transport to dialysis (would have been a big fight).

But yeah, we got familiar with the dialysis process - packing his bag with blanket, headphones, etc., getting him from apartment to car, driving to the center, going to get a wheel chair, getting him in the door and situated in the waiting room, picking him up after, reversing the process. Some folks end up doing that for months, years. Tom did not last that long, but we got used to it. We each took a day - Kevin was local, I came up from CT, Kathy from the cape. I ended up spending the downtime hours cleaning and organizing his place - sorting out gun stuff, knife stuff, clutter, etc. and trying to do it in a way that would not get him too pissed off.

Finally, we got familiar with the hospice facility Tom spent his last week at. It was a comforting place (after the busy and cold hospitals, and the cluttered and dirty apartment) and it feels a little bit like we took the place over for a week (which they are used to) - bringing in a lot of Tom's things for his room, providing 24/7 companionship, and hosting a family dinner and several smaller meals / gatherings. We'd bring in some food for ourselves, as well as some of Tom's requests to supplement their food. We wandered the place during overnights; got familiar with the medical staff, the volunteers, the visitors. And then boom - Tom died, all done.

Not sure why I'm writing this - it just struck me as odd how each of these places became suddenly familiar and essential - and just as suddenly, we transitioned to the next thing. I almost want to do a grand tour - visiting all the hot-spots of this sad adventure one last time, to say good-bye, to thank the places and people for doing what they could.