One of the regular encounters of my daily walks with Elo the pup are with catbirds that are nesting in the shrubs along the route. As we come into our territory, the catbird perches above us on a tree branch or utility line, and begins to scold us. When we continue along the road (presumably closer to the nest) the bird will swoop down at Elo, flaring grey and white wings, without actually making contact. Seems to leave me alone.
I am reminded of an ex's outdoor family cat, Loki, who would be periodically dive-bombed by the catbirds in the backyard. Loki, a tiny cat as cats go, would crouch low, occasionally turn on her back a flail her limbs, and my ex's father would watch with great interest and hilarity.
Elo, old, with failing vision and hearing, does not even notice. He's too intent on the one good sense he has, gathering all the smells. In a similar way, all the neighborhood dogs barking when he comes into sight are barely noticed unless he happens to look up or expect them - then his tail rises and he gets a bit animated.
The catbirds aren't the most territorial birds I've encountered. That would go to the red winged blackbirds, which used to nest along the perimeter of a nearby farm / field I used to take Elo to. They'd perch high in a tree, their warning call very noticeable, and they would dive bomb, from a great height, aiming for both my head and Elo's. As they came close, they'd flare their wings (like an airplane lowering the flaps) as a form of air brake, causing a big rush of air - scaring the heck out of Elo and I. I'd note their nesting area, listen for their call, and keep an eye on them.
They made an impression though - I've picked up several pieces of art representing the red winged birds over the years - striking.
I remain enamored with birds. I think because, as the descendants of dinosaurs, they remind me of the resilience of life, especially as we witness the next great extinction, caused by our own species' inability to regulate our own population, consumption, and waste. When I see a flock of robins in the springtime - walking along the lawn, hunting earthworms, I see carnivorous dinosaurs. When I see flocks of canadian geese, I see groups of herbivor dinosours - gathered along a shoreline eating water plants.
June 30, 2019
June 27, 2019
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.
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.
June 21, 2019
The Things You Toss, The Things You Save
As we start to move towards the completion of cleaning up Tom's place and sorting out his many collections, mementos, and personal belongings, we start to hit the hard questions regarding what to do with the many pieces of history which he held on to.
Some things are easy. His kitchen was full of junk - the food got tossed (most was expired), the dishware, cookware, appliances were nothing special. We donated anything salvageable. We took a few things (brother Kevin took a tiny cleaver). But mostly, gone.
Clothes too, mostly tossed or donated. Tom held on to clothes that were out of style, no longer fit, etc. for decades. There were various gifts, unworn, with tags affixed. We tossed what was soiled or torn, donated what was decent. I took a small collection of Falcon Ridge staff tee-shirts (mine were used to make a quilt, so the replacements were welcomed). But mostly, the clothes were easy to sort through.
The collections too - easy. Tom had a lot of firearms and ammo; most of that got sold. A pair of pearl handled revolvers went to nephew and his wife (who live in TX). A handgun went to a friend who helped make safe, sort and get the collection ready for sale. And a beautiful rifle (I'm not a gun person, but when I saw this gun I was impressed with the workmanship and clean lines) went to brother Kevin who bought it for Tom. The firearms cleared a good chunk of change.
The 700+ N-gauge locomotives and rolling stock, not so much, going for perhaps 10% on the dollar. The knives are out on consignment, but will not be an easy sell; he set aside some Buck Knives to give to cousins at the family reunion, and set some of his special knives aside (maybe we'll toss them in the grave when we bury him, like ancient warlords). The slot cars went to Kevin (for now) who wanted the track and a few cars for his son, but ended up taking the wall rack with 200 or so cars - not expecting much return, like the trains. We picked over his hats, donated the rest. We found scores of pieces of career keepsakes - nametags, pins, badges, insignia - we'll keep one piece of each type for the archives, toss the rest.
A large DVD collection (325 titles) were donated to DVDs to the Troops - which matches up deployed troops with DVD collections. Cost us $100 or so to box them up and ship them, but well worth it. We put a small note in each box about Tom. A while later we discovered a large VHS collection; still not disposed of. Hoping to drop off at a shop in MA that advertises for them (no money needed, just want to keep them out of the landfill if possible). His records, cassettes, and CDs were sold (along with his turntable, the real gem I think) for $200.
Three sets of golf clubs (one set to brother-in-law TQ, the others consigned), two ball gloves, a tired football, golf shoes, a dart board, two rolling tool chests, an air compressor - all consigned. Compound bow and arrows (give to relative? consign?).
Now, on to the hard stuff. Tom had a bin and a few piles of treasures - baby book, family photos, etc. that have made their way into the family archives (a bin I'm curating, and have recently had to enlarge). Yearbooks were harder - his HS yearbooks we're keeping (he's in the two he has), his college yearbooks will be sold or donated (he's not in either). Three books from dad's military career (naval officer school, two cruise books from the carriers Essex and Shangri-La are a harder call (might sell, might keep). I've got a few hours of organizing and filing that bin. which now contains keepsakes from Dad, Mom, and Tom.
A special jacket (replica he had made up, based on Dad's frayed, worn, and long trashed navy aviator's jacket, festooned with patches from his ships, units, and cruises) is sort of the hot potato - nobody really wants it, but nobody is willing to get rid of it. There's a crocheted afghan that mom made up for him which is in a pile for me; I realized yesterday that I'll soon own three of Mom's handiwork - I have one squirreled away that was a wedding gift, mom made my ex Alex one which he's giving to me as he divests from stuff, and now Tom's. I don't dare use them so long as Elo is around (he'd trash 'em) but he'll be moving on soon enough. Maybe bring one to the reunion in case anyone wants something from Mom.
Pretty much everything else is going to donate or toss via (800) Got-Junk. Mom and Dad's headboard / footer (trashed beyond use, although he had been using them plus their 50+ year old mattress and boxspring). A bookshelf I recognize from being in my bedroom as a child (buh-bye). The family dining room hutch (which lived in my office once upon a time, I remember having legos and keepsakes in there) - gone (the matching buffet is Kevin's aquarium stand, the table and chairs long gone).
By all accounts, Tom's place is pretty close to being empty. I've got one more trip north scheduled for next Tuesday to pick up strays. After that, we're done. Less than a month. We're nothing if not efficient in our grief and complicated emotions....
Some things are easy. His kitchen was full of junk - the food got tossed (most was expired), the dishware, cookware, appliances were nothing special. We donated anything salvageable. We took a few things (brother Kevin took a tiny cleaver). But mostly, gone.
Clothes too, mostly tossed or donated. Tom held on to clothes that were out of style, no longer fit, etc. for decades. There were various gifts, unworn, with tags affixed. We tossed what was soiled or torn, donated what was decent. I took a small collection of Falcon Ridge staff tee-shirts (mine were used to make a quilt, so the replacements were welcomed). But mostly, the clothes were easy to sort through.
The collections too - easy. Tom had a lot of firearms and ammo; most of that got sold. A pair of pearl handled revolvers went to nephew and his wife (who live in TX). A handgun went to a friend who helped make safe, sort and get the collection ready for sale. And a beautiful rifle (I'm not a gun person, but when I saw this gun I was impressed with the workmanship and clean lines) went to brother Kevin who bought it for Tom. The firearms cleared a good chunk of change.
The 700+ N-gauge locomotives and rolling stock, not so much, going for perhaps 10% on the dollar. The knives are out on consignment, but will not be an easy sell; he set aside some Buck Knives to give to cousins at the family reunion, and set some of his special knives aside (maybe we'll toss them in the grave when we bury him, like ancient warlords). The slot cars went to Kevin (for now) who wanted the track and a few cars for his son, but ended up taking the wall rack with 200 or so cars - not expecting much return, like the trains. We picked over his hats, donated the rest. We found scores of pieces of career keepsakes - nametags, pins, badges, insignia - we'll keep one piece of each type for the archives, toss the rest.
A large DVD collection (325 titles) were donated to DVDs to the Troops - which matches up deployed troops with DVD collections. Cost us $100 or so to box them up and ship them, but well worth it. We put a small note in each box about Tom. A while later we discovered a large VHS collection; still not disposed of. Hoping to drop off at a shop in MA that advertises for them (no money needed, just want to keep them out of the landfill if possible). His records, cassettes, and CDs were sold (along with his turntable, the real gem I think) for $200.
Three sets of golf clubs (one set to brother-in-law TQ, the others consigned), two ball gloves, a tired football, golf shoes, a dart board, two rolling tool chests, an air compressor - all consigned. Compound bow and arrows (give to relative? consign?).
Now, on to the hard stuff. Tom had a bin and a few piles of treasures - baby book, family photos, etc. that have made their way into the family archives (a bin I'm curating, and have recently had to enlarge). Yearbooks were harder - his HS yearbooks we're keeping (he's in the two he has), his college yearbooks will be sold or donated (he's not in either). Three books from dad's military career (naval officer school, two cruise books from the carriers Essex and Shangri-La are a harder call (might sell, might keep). I've got a few hours of organizing and filing that bin. which now contains keepsakes from Dad, Mom, and Tom.
A special jacket (replica he had made up, based on Dad's frayed, worn, and long trashed navy aviator's jacket, festooned with patches from his ships, units, and cruises) is sort of the hot potato - nobody really wants it, but nobody is willing to get rid of it. There's a crocheted afghan that mom made up for him which is in a pile for me; I realized yesterday that I'll soon own three of Mom's handiwork - I have one squirreled away that was a wedding gift, mom made my ex Alex one which he's giving to me as he divests from stuff, and now Tom's. I don't dare use them so long as Elo is around (he'd trash 'em) but he'll be moving on soon enough. Maybe bring one to the reunion in case anyone wants something from Mom.
Pretty much everything else is going to donate or toss via (800) Got-Junk. Mom and Dad's headboard / footer (trashed beyond use, although he had been using them plus their 50+ year old mattress and boxspring). A bookshelf I recognize from being in my bedroom as a child (buh-bye). The family dining room hutch (which lived in my office once upon a time, I remember having legos and keepsakes in there) - gone (the matching buffet is Kevin's aquarium stand, the table and chairs long gone).
By all accounts, Tom's place is pretty close to being empty. I've got one more trip north scheduled for next Tuesday to pick up strays. After that, we're done. Less than a month. We're nothing if not efficient in our grief and complicated emotions....
June 15, 2019
Archaeology
We're making slow but steady work on Tom's apartment - consisting of equal parts collections (guns, knives, baseball caps, trains, slot cars, and a few other smaller groupings), the day-to-day things we all have (clothes, kitchenware, household furnishings, entertainment), and the things Tom has chosen to hold on to - which bordered on, but did not quite cross the line into, hoarding.
In some ways, it's like an archaeological dig - thinking of the ruins of the ancient city of Troy, which is actually many cities, in strata; the Troy of Homer's story is most likely Troy VIIa. So we're finding stuff that Tom stashed away years or decades ago, that have been mostly untouched ever since.
For instance, we found this wooden wine box of cassette tapes. Not sure how common using a wine gift / promo box for cassettes across the culture, but I worked in a package store in college; all my friends used them, I used them, and it spread to family, I have no doubt I gave this particular box to Tom.
Also interesting is the mix of purchased cassettes and recorded cassettes - a typical vinyl LP (two sides) would just fit on one side of a 90 minute cassette (45 minutes) so one would either put two albums from one group on a cassette or mix / match. Occasionally an album would be too long (so you'd either manually remove a song from the tape, or let the thing play out and cut off the last song) - later in the tape evolution 100 minute tapes were common, adding 5 minutes per side.
We ended up tossing the home-made tapes (except for a tape of The Nields first two albums, which I recognize as something I made for Tom), and selling his CD collection (again, I grabbed four Nields CDs), his albums and turntable, and the purchased cassettes for $200.
Note the real milk crate to store the albums in; back in the days before companies started to make plastic crates that would actually fit an album. Back in the say these things doubled as end tables, chairs, shelving supports, cable bins (for musicians). And of course, holding (and over time, warping) vinyl albums.
In some ways, it's like an archaeological dig - thinking of the ruins of the ancient city of Troy, which is actually many cities, in strata; the Troy of Homer's story is most likely Troy VIIa. So we're finding stuff that Tom stashed away years or decades ago, that have been mostly untouched ever since.
Also interesting is the mix of purchased cassettes and recorded cassettes - a typical vinyl LP (two sides) would just fit on one side of a 90 minute cassette (45 minutes) so one would either put two albums from one group on a cassette or mix / match. Occasionally an album would be too long (so you'd either manually remove a song from the tape, or let the thing play out and cut off the last song) - later in the tape evolution 100 minute tapes were common, adding 5 minutes per side.
Note the real milk crate to store the albums in; back in the days before companies started to make plastic crates that would actually fit an album. Back in the say these things doubled as end tables, chairs, shelving supports, cable bins (for musicians). And of course, holding (and over time, warping) vinyl albums.
Post Tom: Day Ten
Hard to believe it's been 10 days since Tom's passing. It still seems very present; waves of sadness wash over me periodically bring tears, sobs really. At the same time, moving on with life, and spending still a lot of time working to make some sense of the jumble that Tom left behind.
Once Tom's obit was posted, I petitioned Facebook to convert his account to an In Memorium page - wanted some place to post photos, a link to the obit, etc. for Tom's friends and family. I've dutifully scanned in some old school and family photos, a selection of photos from Tom's trip to Philmont Scout Camp in 1981, and a handful of excerpts from his Keefe Tech (high school) yearbooks. I collected two UMass Lowell yearbooks as well but have failed to find Tom in those at all; will take a second run at them soon. I doubt we'll keep the yearbooks but nice to pull out the photos and memories.
It's a bit sad how underwhelming the response to Tom's death has been. When he first posted about his illness (from his hospice bed) there was a flurry of activity from former co-workers - lots of "you got this buddy" and "get well soon" posts that make me wonder if his co-workers (federal workers, draw your own conclusion) actually understood what the word hospice means.
I announced his death in that same thread a few days later, and a big outpouring of grief and disbelief - "I just talked to him a month ago, he did not say anything about being sick". A few memories of work (Tom retired in 2012) and more recent gatherings / reunions. But since then, no real response to additional posts. One timeline tribute, a few family comments to the photos I posted.
Nobody has posted on his obit's memory wall at all. Not really super surprising; he's been out of the workplace for 8-9 years (his primary community), and drinking hard for a few years longer, and that create both isolation and friction. Three friends came through in the final months - two were Kevin's friends who had gotten to know Tom through poker games, TV sports parties, etc., and one was the son of the woman who lives with Tom's landlady (we told them he was sick early on in the process, since we were coming and going to his place and did not want her to worry).
Over the past few weeks I'd ask my brother Kevin about particular friends or communities - there'd be a story of a falling out, an argument, etc. Tom burned a lot of bridges over the past decade.
One of the books I took up for comfort in the week of visiting hospice was a Mary Oliver poetry compilation. The poem When Death Comes floated past my attention.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.In a lot of ways, Tom was a visitor to this world; I'm sure he's touches some lives, but he never really seemed to get much traction. And looking over a lifetime's transition from adorable cherub to curmudgeonly and addicted crank, makes me very sad.
We decided to not do much in terms of funeral, viewing, ceremony, etc. and that seems like the right decision - it would have been us and a smattering of family and our friends coming more for us than for Tom. We did not need nor want that. And since none of us has a particular religious affiliation (Tom's proclamation that he was a strict Roman Catholic in the hospital not-with-standing, he has not been to church in decades except for a dutiful holiday with Mom now and then) it felt specious to arrange a mass or other christian ritual. We'll have a priest do a graveside service in PA (where our more observant extended family might come).
June 13, 2019
Infrastructure
Spent a few hours at Tom's place this afternoon, mostly working on dis-assembling the infrastructure that he had built up over two decades of living in his space.
Power
Tom's place is basically an efficiency / in-law apartment tacked on to an older home. Two rooms, a galley kitchen, tiny bathroom, and a 3 seasons porch / mud-room / entrance (that Tom had filled with tools, supplies, sporting goods). The wall receptacles were limited at best, often two wire (no ground) and not really sufficient for modern life. Not surprised that Tom ran a few extension cords, but we pulled a ton of stuff out of there:
Quite frankly, we're lucky there was never a fire. I threw out more than 1/2 the things we pulled out - ground plugs cut off, corroded green. There are a few pieces that showed some signs of overheating. Between the clutter, the collections, the dust bunnies and cat fur everywhere - place was a firetrap.
Pretty much everything is disconnected with the exception of two living room lamps (plugged in directly to the wall) and a fan I brought in to air the place out when we are working there.
Cable and Phones
Similarly, the place was set up years ago, before the advent of cable modems and digital phone. There were two cable feeds from the basement - one in the bedroom (fed a TV on a dresser) and one in the living room that ran 2/3 of the way around the room, split out to feed a TV and a cable modem. I broke down both TVs, packaged up the cable boxes / remotes to go back to the cable company, and coiled / wrapped the loose cable feeds from the floor.
He also had a video switcher (a remnant of the days before flat screen / multi input HDMI televisions, when TVs had a single input) - with a handful of left/right/audio cables to switch in DVD, VCR, Roku box and who knows what. All wrapped up and bagged.
There were also a ton of phone cords around - two long runs, lots of short cords. He had at least three phones in the place, plus an answering machine, and a phone line over to where a computer once sat, in the days before broadband. All the phone cables were struck and tossed, the phones and answering machine bagged to toss, donate, or give away. The phones were still active when I was there but I assume they will be off soon.
And while there was no desktop computer evident (we've got one active laptop and two old laptops to dispose of) I did get rid of an old printer, an packed up a Boston Acoustics speaker set (woofer and two smaller speakers, wiring and power supply) which I'm assuming works and is still in good shape, although when was the last time computer components were white / cream? Been a few years....
Audio System and Speaker Cables
Tom had the sort of overkill audio system of someone who grew up in an earlier time and was impressed by both quantity and size. There were four large Technics speakers in the four corners of the living room. He's had them a while - several show signs of being attacked by ferrets and/or cats. There were a couple of smaller wooden speakers. And there were two Realistic speakers that were the very first speakers I ever purchased (I remember bringing them back from Radio Shack strapped to my 5-Speed Schwinn bike rack). Why Tom kept them, who knows. They were prominently set atop his entertainment unit, not wired up.
There were speaker cables running all over the place (under the rug, around the perimeter) - with about 50% actually wired up / operating. All gone now.
Feeding this acoustic mess, a Sony surround sound amplifier - old school (big screw down terminals on the back). Add a CD changer, a DVD player, a VHS player, and a turntable (Kevin removed and sold with the records). All disconnected, dusted off, found, matched and packed up remotes and power cords, and wrapped all the audio patch cables.
Finally, up in the closet there were an old Technics receiver (not something I ever owned, but I bet I bought it for him back in the day) and a cassette desk (which no doubt works fine, just fell out of use). I had previously recycled a CD changer and DVD player, boxed up in the bedroom - which had either stopped working or simply been replaced and never tossed.
Pot Calling the Kettle Black
I'm sure when my time comes, people will be similarly challenged / amused by my own electronic hackery. I've got a small place, but in my own defense,, a home office / working out of the house perforce complicates things a bit.
I'm a bit less of a pack-rat though - I take regular trips to Green Monster recycling to get rid of old tech, and when technology improves, I transition over pretty cleanly. I've owned video switchers (for instance) but they are all gone now once I got a modern TV.
My TV is fed via cable box, DVD, and Roku box (all direct connect via HDMI). The TV interfaces to my stereo (so as to provide better sound upstairs). I have "B" speakers running into the kitchen (so I can listen while I cook / wash dishes / hang out on porch without blasting the volume). And my stereo runs a line out to a small amp / speaker set-up in the basement (so I can listen to anything upstairs downstairs, as I work).
And I do have a full complement of audio inputs - CD player, video, MP3 portable (a dedicated Kindle Fire), cassette (presently in the basement for a project, but there's a spot for it). The one thing missing is a turntable, I lent mine out years ago. It's coming back to me soon, although I doubt I will hook it up except perhaps for a special occasion.
Power
Tom's place is basically an efficiency / in-law apartment tacked on to an older home. Two rooms, a galley kitchen, tiny bathroom, and a 3 seasons porch / mud-room / entrance (that Tom had filled with tools, supplies, sporting goods). The wall receptacles were limited at best, often two wire (no ground) and not really sufficient for modern life. Not surprised that Tom ran a few extension cords, but we pulled a ton of stuff out of there:
- Five AC timers (used for Xmas lights, but also some room lights)
- 4 plug-in receptacle adapters to convert 2 outlets to 6, at the wall
- 5 AC power strips
- 3 AC splitters (convert 1 receptacle to 3)
- 12 or so extension cords
- 2 high power extension cords
Quite frankly, we're lucky there was never a fire. I threw out more than 1/2 the things we pulled out - ground plugs cut off, corroded green. There are a few pieces that showed some signs of overheating. Between the clutter, the collections, the dust bunnies and cat fur everywhere - place was a firetrap.
Pretty much everything is disconnected with the exception of two living room lamps (plugged in directly to the wall) and a fan I brought in to air the place out when we are working there.
Cable and Phones
Similarly, the place was set up years ago, before the advent of cable modems and digital phone. There were two cable feeds from the basement - one in the bedroom (fed a TV on a dresser) and one in the living room that ran 2/3 of the way around the room, split out to feed a TV and a cable modem. I broke down both TVs, packaged up the cable boxes / remotes to go back to the cable company, and coiled / wrapped the loose cable feeds from the floor.
He also had a video switcher (a remnant of the days before flat screen / multi input HDMI televisions, when TVs had a single input) - with a handful of left/right/audio cables to switch in DVD, VCR, Roku box and who knows what. All wrapped up and bagged.
There were also a ton of phone cords around - two long runs, lots of short cords. He had at least three phones in the place, plus an answering machine, and a phone line over to where a computer once sat, in the days before broadband. All the phone cables were struck and tossed, the phones and answering machine bagged to toss, donate, or give away. The phones were still active when I was there but I assume they will be off soon.
And while there was no desktop computer evident (we've got one active laptop and two old laptops to dispose of) I did get rid of an old printer, an packed up a Boston Acoustics speaker set (woofer and two smaller speakers, wiring and power supply) which I'm assuming works and is still in good shape, although when was the last time computer components were white / cream? Been a few years....
Audio System and Speaker Cables
Tom had the sort of overkill audio system of someone who grew up in an earlier time and was impressed by both quantity and size. There were four large Technics speakers in the four corners of the living room. He's had them a while - several show signs of being attacked by ferrets and/or cats. There were a couple of smaller wooden speakers. And there were two Realistic speakers that were the very first speakers I ever purchased (I remember bringing them back from Radio Shack strapped to my 5-Speed Schwinn bike rack). Why Tom kept them, who knows. They were prominently set atop his entertainment unit, not wired up.
There were speaker cables running all over the place (under the rug, around the perimeter) - with about 50% actually wired up / operating. All gone now.
Feeding this acoustic mess, a Sony surround sound amplifier - old school (big screw down terminals on the back). Add a CD changer, a DVD player, a VHS player, and a turntable (Kevin removed and sold with the records). All disconnected, dusted off, found, matched and packed up remotes and power cords, and wrapped all the audio patch cables.
Finally, up in the closet there were an old Technics receiver (not something I ever owned, but I bet I bought it for him back in the day) and a cassette desk (which no doubt works fine, just fell out of use). I had previously recycled a CD changer and DVD player, boxed up in the bedroom - which had either stopped working or simply been replaced and never tossed.
Pot Calling the Kettle Black
I'm sure when my time comes, people will be similarly challenged / amused by my own electronic hackery. I've got a small place, but in my own defense,, a home office / working out of the house perforce complicates things a bit.
I'm a bit less of a pack-rat though - I take regular trips to Green Monster recycling to get rid of old tech, and when technology improves, I transition over pretty cleanly. I've owned video switchers (for instance) but they are all gone now once I got a modern TV.
My TV is fed via cable box, DVD, and Roku box (all direct connect via HDMI). The TV interfaces to my stereo (so as to provide better sound upstairs). I have "B" speakers running into the kitchen (so I can listen while I cook / wash dishes / hang out on porch without blasting the volume). And my stereo runs a line out to a small amp / speaker set-up in the basement (so I can listen to anything upstairs downstairs, as I work).
And I do have a full complement of audio inputs - CD player, video, MP3 portable (a dedicated Kindle Fire), cassette (presently in the basement for a project, but there's a spot for it). The one thing missing is a turntable, I lent mine out years ago. It's coming back to me soon, although I doubt I will hook it up except perhaps for a special occasion.
June 09, 2019
Post Tom: Day Four
It was the sort of farewell dinner that we're good at - coming together in our grief to remember our brother, to thank friends who stepped up at the end, to support each other. We three remaining Russells, a couple of partners, one nephew, and two couples - Kevin's friend Alex (who we've decided to adopt, he was amazing over the past months) and his girlfriend, and Tom's friends Jeff & Paula, who caught wind of Tom's illness near the end (Jeff's mom lives with Tom's landlady) and showed up big in the final few weeks.
Not a traditional memorial service by any means - I brought a bag full of photos that we passed around, we told stories, shared memories. No formal prayer or speeches or anything. More laughter and smiles than tears. We do the tears alone....
Figuring out how to memorialize our brother remains a challenge. The nature of his addiction and illness (let's just get it out there, alcoholism, resulting in end stage liver disease) meant he had stepped back from communities, friends, and life over the past decade. So while Tom would have wanted a big, classic wake and funeral with open casket and lines of mourners and all that - we knew it would be us, an empty room, a handful of people who did not know Tom, showing up for us. We neither need nor want that.
Similarly, there's no connection to our religion of origin for any of us. Tom professed to being a "strict roman catholic" in the hospital (mostly when it came to considering things like hospice, end of life decisions, choosing to pursue life extending treatments) but he's not been to church in many decades, and then only with mom. I'm sure the last time he showed up in the parish rolls was as a confirmee in his teens.
The nature of the post sex abuse scandal catholic church doubles down on the discomfort - Mom struggled with the lack of a resident parish priest (the parish is run by a nun these days, visiting priests, often from overseas, say mass and handle the sacraments), and Tom did as well. An older priest visited Tom in the hospital (at our request) to clear up some end of life issues (DNI, DNR, hospice care, all of which Tom thought were against catholic teaching) - he also performed the (choose one) last rites, sacrament of the sick, annointing of the oils and gave Tom communion. There was really no priest or parish to call on when he was in hospice care; a hospice chaplain stopped in a few times who Tom clicked with.
So, we're working on an obituary; I'll be putting together some sort of photo album. We'll convert his Facebook page to a memorial page and share things there. We're gathering pieces of his collection (knives, hats, coins) to share with cousins, friends, relatives who might want something to remember Tom by.
Later this summer, we'll travel to Lancaster, PA, to inter Tom's ashes in the family plot. (Mom had asked to be cremated so we could bury her over the summer when her family could be there, and there would be room in the plot for 1-2 of us kids). We'll get a priest for a graveside service, family from mom's side will be there. "It will be nice" as mom would say.
It might seem (from the outside) that we are taking this lightly, not honoring Tom. We're each dealing with deep, complicated emotions (sorrow, grief, anger, compassion, love), we're coming off several months of crisis mode as we dealt with Tom's illness (and his often erratic or irrational demand and responses around it), and we're looking at several months of work to peel apart Tom's life and belonging in a way that is respectful and honors the things he loved. Relationship Status: It's Complicated.
Not a traditional memorial service by any means - I brought a bag full of photos that we passed around, we told stories, shared memories. No formal prayer or speeches or anything. More laughter and smiles than tears. We do the tears alone....
Figuring out how to memorialize our brother remains a challenge. The nature of his addiction and illness (let's just get it out there, alcoholism, resulting in end stage liver disease) meant he had stepped back from communities, friends, and life over the past decade. So while Tom would have wanted a big, classic wake and funeral with open casket and lines of mourners and all that - we knew it would be us, an empty room, a handful of people who did not know Tom, showing up for us. We neither need nor want that.
Similarly, there's no connection to our religion of origin for any of us. Tom professed to being a "strict roman catholic" in the hospital (mostly when it came to considering things like hospice, end of life decisions, choosing to pursue life extending treatments) but he's not been to church in many decades, and then only with mom. I'm sure the last time he showed up in the parish rolls was as a confirmee in his teens.
The nature of the post sex abuse scandal catholic church doubles down on the discomfort - Mom struggled with the lack of a resident parish priest (the parish is run by a nun these days, visiting priests, often from overseas, say mass and handle the sacraments), and Tom did as well. An older priest visited Tom in the hospital (at our request) to clear up some end of life issues (DNI, DNR, hospice care, all of which Tom thought were against catholic teaching) - he also performed the (choose one) last rites, sacrament of the sick, annointing of the oils and gave Tom communion. There was really no priest or parish to call on when he was in hospice care; a hospice chaplain stopped in a few times who Tom clicked with.
So, we're working on an obituary; I'll be putting together some sort of photo album. We'll convert his Facebook page to a memorial page and share things there. We're gathering pieces of his collection (knives, hats, coins) to share with cousins, friends, relatives who might want something to remember Tom by.
Later this summer, we'll travel to Lancaster, PA, to inter Tom's ashes in the family plot. (Mom had asked to be cremated so we could bury her over the summer when her family could be there, and there would be room in the plot for 1-2 of us kids). We'll get a priest for a graveside service, family from mom's side will be there. "It will be nice" as mom would say.
It might seem (from the outside) that we are taking this lightly, not honoring Tom. We're each dealing with deep, complicated emotions (sorrow, grief, anger, compassion, love), we're coming off several months of crisis mode as we dealt with Tom's illness (and his often erratic or irrational demand and responses around it), and we're looking at several months of work to peel apart Tom's life and belonging in a way that is respectful and honors the things he loved. Relationship Status: It's Complicated.
June 08, 2019
Post Tom: Day Three
I headed north again to work on Tom's place some more.
Once Elo moves on I'm gonna get some laminate flooring for the kitchen and living room....
- Finished sorting his trains, a sort of advanced level version of Concentration as I would pick up a box, look at the description, and try to match one of the loose cars or locomotives. I did pretty well - there were probably 20-30 pieces at the end with no matching boxes (not bad for a collection that exceeded 800 pieces).
Packed up in five boxes (including some accessories, some old copies of train magazines, a power supply, and a large cache of unopened accessories and parts. We trashed a small track layout, anything that was opened or loose, paint, solvents, brushes, etc. Still, an impressive collection.
These will come home with me next trip, I'll set up a spreadsheet to document what we have, and send to a few dealers to quote the whole pile. - Packed away a dozen or so small match-box / corgi type metal cars. Not sure if they are worth much, but could not hurt to check.
- Packed away a handful of beer steins and beer mugs. Again, no idea of value, but worth checking out. I was (pleasantly) surprised that my own stein collection (long gone, but I thought Tom might have taken them) was nowhere to be found.
- Filed all of his musical CDs - found that many of the boxes we'd packed the other day were empty, and found 4 CD folders containing the disks. Another game of advanced concentration matching those up. Threw out the unmatched disks and cases.
- Piled four boxes of DVDs (perhaps 300 or 350) in my cart and brought home. I've made contact with an organization that facilitates DVD donation for troops deployed troops, have three names / addresses to ship them to, and ordered some special boxes designed to hold 25 DVDs per box. Will cost a bit to send them (USPS Media Rate, discounted to APO addresses) but worth it; Tom was a big supporter of the troops. Will put a little note about Tom in the boxes.
Once Elo moves on I'm gonna get some laminate flooring for the kitchen and living room....
June 07, 2019
Post Tom: Day Two
As we start the onerous, painful, and occasionally surreal process of
settling Tom’s affairs, we tentatively step up to the cavern of
eternity, i.e. Tom’s apartment. I spent the yesterday there - disassembled the
bed (that we initially found with two boxsprings and two mattresses,
Tom needed a stool to climb in. He fought us but we convinced him to use
just one boxspring and one mattress). Boxed up DVD’s to donate or sell
(um, 400 of them). Started to box up his n-scale trains - over
700 pieces of rolling stock. Over 100 locomotives, most of which were
in a display case so I had to figure out which box to put them in. It’s a
big project.
I jokingly proposed some rules for the project.
#1: if you find an unopened, new in box, or tags still on item that you gifted Tom, you get first dibs. We found a lot of gifts he never got around to using (many from mom, who isn’t participating)
#2: if you decide you want something, you need to tell the others the story - why, what meaning. A way to get to know Tom and each other better.
#3: if Tom wanted you to have something, and it’s not something you want or need, it’s ok to not take it. No guilt. He was trying to give his stereo system to me all week. I’m 58, I’ve lived on my own for 12 years, I’ve had plenty of time to put together an audio system that meets my needs.
What I brought home, today:
#1: a little stuffed kitty I bought him during his first long stay at Beth Israel, when he was really missing Grace, his kitty. It reminds me of his softer, gentler side
#2: some noise canceling headphones I bought for him during the same hospital stay. He did not use them then, but they were perfect for dialysis, glad they made his life a little better for a few days.
#3: a hand made Asian scroll that I had apparently bought him during a trip to Hong Kong, 20+ years ago. He had it hung below two samurai swords he had, he even saved the box for it (which I almost tossed by accident) and was quite proud of the display. I have no idea what it says, I ought up to try to figure it out.
#4: PBS Alone in the Wilderness DVD’s - something he asked for and I bought him for Xmas. He would have liked that sort of life, I think. It will remind me of him.
It’s a bit sad to be in his home with him gone, and we’re constantly finding something that brings tears. But we three share just enough OCD / ADD characteristics, and have been itching to get our hands on the place (to clean, to organize, to purge and declutter) since he first got sick, but he would not let us touch much. So there’s something therapeutic in trying to clean up his life a bit, contribute to him a little, even after the fact.
I jokingly proposed some rules for the project.
#1: if you find an unopened, new in box, or tags still on item that you gifted Tom, you get first dibs. We found a lot of gifts he never got around to using (many from mom, who isn’t participating)
#2: if you decide you want something, you need to tell the others the story - why, what meaning. A way to get to know Tom and each other better.
#3: if Tom wanted you to have something, and it’s not something you want or need, it’s ok to not take it. No guilt. He was trying to give his stereo system to me all week. I’m 58, I’ve lived on my own for 12 years, I’ve had plenty of time to put together an audio system that meets my needs.
What I brought home, today:
#1: a little stuffed kitty I bought him during his first long stay at Beth Israel, when he was really missing Grace, his kitty. It reminds me of his softer, gentler side
#2: some noise canceling headphones I bought for him during the same hospital stay. He did not use them then, but they were perfect for dialysis, glad they made his life a little better for a few days.
#3: a hand made Asian scroll that I had apparently bought him during a trip to Hong Kong, 20+ years ago. He had it hung below two samurai swords he had, he even saved the box for it (which I almost tossed by accident) and was quite proud of the display. I have no idea what it says, I ought up to try to figure it out.
#4: PBS Alone in the Wilderness DVD’s - something he asked for and I bought him for Xmas. He would have liked that sort of life, I think. It will remind me of him.
It’s a bit sad to be in his home with him gone, and we’re constantly finding something that brings tears. But we three share just enough OCD / ADD characteristics, and have been itching to get our hands on the place (to clean, to organize, to purge and declutter) since he first got sick, but he would not let us touch much. So there’s something therapeutic in trying to clean up his life a bit, contribute to him a little, even after the fact.
June 06, 2019
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.
June 05, 2019
Two Months of Hell
Today was the nadir of a very long two months of Russell family hell. Our beloved brother Tom passed away, far too young, at the age of 51.
Without getting too deeply into things, on April 8th, my sister Kathy took Tom to see his liver doc in Boston (for swelling in his legs and purpura, red spots on his legs). The office APRN took his vitals (routine) and immediately directed him across the street to the Beth Israel Deaconess ER. Heart rate was 110 (turns out he was in A-Fib) and pulse ox was under 80. Turns out liver disease had started to affect pretty much every system in his body.
A chest x-ray (to investigate / confirm lung problems) discovered instead some metastasis (rib, spine, lymph nodes); elevated PSA pointed to Stage 4 prostate cancer as the most likely cause. A CT Scan with contrast media (to check out the cancer, among other things) seems to have pushed his damaged kidneys over the edge. Within the first few days in the Beth Israel ICU, he was looking at needing permanent oxygen, regular dialysis, and a lot of assistance - he had been struggling with strength and stamina for many months.
Tom spent three weeks in the hospital that first trip, about 1/2 that time in the ICU. A testosterone blocker held off the cancer. Transplants were off the table (for a number of reasons). The Beth Israel docs got him patched up - and at Tom's insistence, released him to his home, a place wholly unsuited for rehab and recovery. Tom would not consider other options (rehab, convalescent care, assisted living) even though overnight care, walker or wheelchair, or even having family stay with him was not possible at his place (he had a cat, and we're all very allergic).
We worked our asses off to get his place cleaned up (not quite a hoarder situation, but a lot of collections in way too small a place that had not been seriously cleaned in years, maybe decades). He came home for a week, then fell one night - another trip back to Beth Israel, via ambulance, with a stopover at Metrowest Medical (the hospital where our dad died back in 1979, so Tom freaked out and demanded to be taken elsewhere).
Another week in the hospital to get him patched up again, another week home. Another fall, this time getting tripped up in a bedside potty chair, and calling 911 because he thought he had broken a leg. Ambulance to Metrowest Medical, another freak out, another trip to Beth Israel. I ended up waiting in the Beth Israel ER with him both times, beds finally opened up after 7 pm so he was in the ER for 8-12 hours with little food (often NPO) and not a lot of attention (he was very sick, but not critical).
During the trips home, we'd gamely try to support him, despite his initial insistence that he did not need personal care assistants (he did, and finally got them), did not need overnight care (he did, but could not have it at home), did not need rides to dialysis (he tried to drive himself once, fortunately nobody got hurt). So we were on the hook to stay with him, drive him to/from dialysis, etc. Kathy coming from Mashpee on the cape, me from CT, Kevin was local. I have not tallied my mileage or trips but I was up somewhere between 2x a week and 5x a week, each of the past 8 weeks.
Finally, during this last return to Beth Israel, we had enough and were going to insist he go to a rehab facility - we could no longer care for him at home, get him safely to dialysis, etc. However, fate intervened before we needed to force his hand - when his body stopped responding to dialysis (BP too low) and they had to stop treatment. His options, live out the rest of his life in ICU (where he could get a more specialized form of dialysis, go home (and be back within days), or hospice. He chose hospice.
Tom was in hospice care for a week - we fixed up his room with many familiar items from his home - photos, plaques, keepsakes, tech - and committed to being with him 24/7 through the process. He was able to get out and around via wheelchair for the first few days, and feel less like a patient and more like a guest. We've been frantically googling conditions, medical terms, drugs, treatments throughout his illness, and the web reported that dialysis patients typically live about a week without treatment. Right on the money; Tom's last dialysis session was terminated on a Wednesday, and he died a the Wednesday after.
We're kind of catching our breaths. We've known this was going to be a one way trip for our brother since his first diagnosis - only unsure of how long and what this would look like. It's taken a huge toll on all of us. And while we are shattered and heart-broken, we're also a bit relieved. Tom needed far more in the way of care, support, and assistance than the three of us, and his living situation, were able to provide. Yet he stubbornly insisted he could handle things long after this was not true. We paid a price for that. And we're glad that he died in a bed, with family at his side to comfort him, as opposed to falling and bleeding out alone in his apartment.
Without getting too deeply into things, on April 8th, my sister Kathy took Tom to see his liver doc in Boston (for swelling in his legs and purpura, red spots on his legs). The office APRN took his vitals (routine) and immediately directed him across the street to the Beth Israel Deaconess ER. Heart rate was 110 (turns out he was in A-Fib) and pulse ox was under 80. Turns out liver disease had started to affect pretty much every system in his body.
A chest x-ray (to investigate / confirm lung problems) discovered instead some metastasis (rib, spine, lymph nodes); elevated PSA pointed to Stage 4 prostate cancer as the most likely cause. A CT Scan with contrast media (to check out the cancer, among other things) seems to have pushed his damaged kidneys over the edge. Within the first few days in the Beth Israel ICU, he was looking at needing permanent oxygen, regular dialysis, and a lot of assistance - he had been struggling with strength and stamina for many months.
Tom spent three weeks in the hospital that first trip, about 1/2 that time in the ICU. A testosterone blocker held off the cancer. Transplants were off the table (for a number of reasons). The Beth Israel docs got him patched up - and at Tom's insistence, released him to his home, a place wholly unsuited for rehab and recovery. Tom would not consider other options (rehab, convalescent care, assisted living) even though overnight care, walker or wheelchair, or even having family stay with him was not possible at his place (he had a cat, and we're all very allergic).
We worked our asses off to get his place cleaned up (not quite a hoarder situation, but a lot of collections in way too small a place that had not been seriously cleaned in years, maybe decades). He came home for a week, then fell one night - another trip back to Beth Israel, via ambulance, with a stopover at Metrowest Medical (the hospital where our dad died back in 1979, so Tom freaked out and demanded to be taken elsewhere).
Another week in the hospital to get him patched up again, another week home. Another fall, this time getting tripped up in a bedside potty chair, and calling 911 because he thought he had broken a leg. Ambulance to Metrowest Medical, another freak out, another trip to Beth Israel. I ended up waiting in the Beth Israel ER with him both times, beds finally opened up after 7 pm so he was in the ER for 8-12 hours with little food (often NPO) and not a lot of attention (he was very sick, but not critical).
During the trips home, we'd gamely try to support him, despite his initial insistence that he did not need personal care assistants (he did, and finally got them), did not need overnight care (he did, but could not have it at home), did not need rides to dialysis (he tried to drive himself once, fortunately nobody got hurt). So we were on the hook to stay with him, drive him to/from dialysis, etc. Kathy coming from Mashpee on the cape, me from CT, Kevin was local. I have not tallied my mileage or trips but I was up somewhere between 2x a week and 5x a week, each of the past 8 weeks.
Finally, during this last return to Beth Israel, we had enough and were going to insist he go to a rehab facility - we could no longer care for him at home, get him safely to dialysis, etc. However, fate intervened before we needed to force his hand - when his body stopped responding to dialysis (BP too low) and they had to stop treatment. His options, live out the rest of his life in ICU (where he could get a more specialized form of dialysis, go home (and be back within days), or hospice. He chose hospice.
Tom was in hospice care for a week - we fixed up his room with many familiar items from his home - photos, plaques, keepsakes, tech - and committed to being with him 24/7 through the process. He was able to get out and around via wheelchair for the first few days, and feel less like a patient and more like a guest. We've been frantically googling conditions, medical terms, drugs, treatments throughout his illness, and the web reported that dialysis patients typically live about a week without treatment. Right on the money; Tom's last dialysis session was terminated on a Wednesday, and he died a the Wednesday after.
We're kind of catching our breaths. We've known this was going to be a one way trip for our brother since his first diagnosis - only unsure of how long and what this would look like. It's taken a huge toll on all of us. And while we are shattered and heart-broken, we're also a bit relieved. Tom needed far more in the way of care, support, and assistance than the three of us, and his living situation, were able to provide. Yet he stubbornly insisted he could handle things long after this was not true. We paid a price for that. And we're glad that he died in a bed, with family at his side to comfort him, as opposed to falling and bleeding out alone in his apartment.
Death Day: Part II
And then there were three. Tom passed peacefully late this morning.
Kathy was at his side. Kevin visited last night. I had the overnight
shift.
It was pretty clear to me that his spirit had left overnight - his eyes were empty this morning and he did not move around at all. Keeping him safely in his bed had been a challenge over the past week but this morning he did not move.
He was surrounded by photos, plaques, things of meaning to him (including a crocheted quilt made by mom, a navy flight jacket he had made to honor dad, his beloved police and fire scanners and his Hogan's Heroes DVDs). I spent a day this past week going over his knife collection, Kathy spent a day going through 100s of police / fire / military patches with him. We have each spent more time with him in the past two months than we were able to over the past many years.
We're heart-broken and will need some time with our grief. Thank-you for your thoughts, prayers, kind words.
It was pretty clear to me that his spirit had left overnight - his eyes were empty this morning and he did not move around at all. Keeping him safely in his bed had been a challenge over the past week but this morning he did not move.
He was surrounded by photos, plaques, things of meaning to him (including a crocheted quilt made by mom, a navy flight jacket he had made to honor dad, his beloved police and fire scanners and his Hogan's Heroes DVDs). I spent a day this past week going over his knife collection, Kathy spent a day going through 100s of police / fire / military patches with him. We have each spent more time with him in the past two months than we were able to over the past many years.
We're heart-broken and will need some time with our grief. Thank-you for your thoughts, prayers, kind words.
Death Day: Part I
Cross-posted
from our family and friends support group. It’s long past the time when
Tom’s request that this remain private matters. Things like pride,
secrecy, how things look, have been at the root of his life struggle.
***********************
Status quo. Not sure if the relatively quiet night was related to meds, progression of the dying process, or circadian rhythm. Tom’s breathing is labored, noisy due to fluid build-up. But he seems less conscious / aware - yesterday there were moments of struggle as he wanted to sit up or vocalized “get me out of here”. Pretty sure Kathy, who was here Sunday and Monday nights, did the heavy lifting in terms of agitation, panic, trying to keep Tom calm. Just praying that the hospice team is doing the best they can to minimize pain and suffering. When he was agitated yesterday, I held his hand, talked to him of mom & dad, our grandparents, lost pets and relatives and friends. Told him it was ok to let go, that he was loved, that he would be missed.
This is so hard. The capacity of the human body to endure, to continue to grasp the last threads of life in the face of a lifetime of abuse is remarkable. Tom is so strong, so attached to life. And the irony - of healthy yet fragile lives lost so suddenly, to overdose or violence or accident or sudden illness - while this life seems so resilient, is not lost on me.
Since Tom’s initial hospitalization at the beginning of April, this has been a hard road for us all. Tom has raged against the darkness, fighting for every precious moment, every scrap of life, endured so many indignities, long after most of us would have folded up, given in. Stubborn as hell. “A little bullhead” as mom would say.
It does not seem like it will be long. But, knowing Tom, it might be longer than we think. We’re hanging in there. Thanks for continued love, support, prayers.
***********************
And an addendum, for my own timeline. As the nurse and aide came in this morning to check on Tom, I moved to the hall. Was quietly weeping as I wrote up the above. The nurse walked by to check on me, was I ok. I almost had to smile.
It’s the nature of my spiritual work that sadness and tears are welcomed. As someone who learned early and well to push down emotions, to bottle things up, sitting and weeping over a dying brother is appropriate, welcome even. No, I do not seek sadness or crave emotion. But when it’s there, it’s there.
So often we try to stop tears, calm anger in others, because these emotions make us uncomfortable. I’ve come to embrace these as I encounter them in students, trainees, friends. How can my own tears, as we work through this, be anything but appropriate.
***********************
Status quo. Not sure if the relatively quiet night was related to meds, progression of the dying process, or circadian rhythm. Tom’s breathing is labored, noisy due to fluid build-up. But he seems less conscious / aware - yesterday there were moments of struggle as he wanted to sit up or vocalized “get me out of here”. Pretty sure Kathy, who was here Sunday and Monday nights, did the heavy lifting in terms of agitation, panic, trying to keep Tom calm. Just praying that the hospice team is doing the best they can to minimize pain and suffering. When he was agitated yesterday, I held his hand, talked to him of mom & dad, our grandparents, lost pets and relatives and friends. Told him it was ok to let go, that he was loved, that he would be missed.
This is so hard. The capacity of the human body to endure, to continue to grasp the last threads of life in the face of a lifetime of abuse is remarkable. Tom is so strong, so attached to life. And the irony - of healthy yet fragile lives lost so suddenly, to overdose or violence or accident or sudden illness - while this life seems so resilient, is not lost on me.
Since Tom’s initial hospitalization at the beginning of April, this has been a hard road for us all. Tom has raged against the darkness, fighting for every precious moment, every scrap of life, endured so many indignities, long after most of us would have folded up, given in. Stubborn as hell. “A little bullhead” as mom would say.
It does not seem like it will be long. But, knowing Tom, it might be longer than we think. We’re hanging in there. Thanks for continued love, support, prayers.
***********************
And an addendum, for my own timeline. As the nurse and aide came in this morning to check on Tom, I moved to the hall. Was quietly weeping as I wrote up the above. The nurse walked by to check on me, was I ok. I almost had to smile.
It’s the nature of my spiritual work that sadness and tears are welcomed. As someone who learned early and well to push down emotions, to bottle things up, sitting and weeping over a dying brother is appropriate, welcome even. No, I do not seek sadness or crave emotion. But when it’s there, it’s there.
So often we try to stop tears, calm anger in others, because these emotions make us uncomfortable. I’ve come to embrace these as I encounter them in students, trainees, friends. How can my own tears, as we work through this, be anything but appropriate.
“This being human is a guest house. Every morning is a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor...Welcome and entertain them all. Treat each guest honorably. The dark thought, the shame, the malice, meet them at the door laughing, and invite them in. Be grateful for whoever comes, because each has been sent as a guide from beyond.” ~ Rumi
June 03, 2019
Gratitude
This morning, as I rest in a clean and comfortable bed, one word: gratitude.
For lungs that freely exchange O2 and CO2. For a heart that beats steady and strong. For kidneys that cleanse my blood. For a liver that removes toxins and does so much more. For legs strong enough to support my body.
For my home, my bed, my safe and comfortable nest. For a canine companion whose warranty has expired long ago but who continues to be there for me.
For open windows and fresh air and birds singing in the early dawn. For a spiritual path that gives me the tools to both embrace my own life and acknowledge / accept my own inevitable death. For friends and community that will not let me slip too far below the surface.
And for a family coming together in the midst of our individual pain, sadness, fear, and anger to support each other.
As we bear witness and try to provide comfort, as my brother struggles to cope with his failing body, his loss of autonomy, and his own mortality, I am reminded of how much I have to be thankful for, and how often I perhaps take all of these blessings for granted.
It’s been a long couple of months and my time and energy have been needed elsewhere. It will be a little while longer. Looking to come back into my life with a renewed sense of purpose and commitment soon.
For lungs that freely exchange O2 and CO2. For a heart that beats steady and strong. For kidneys that cleanse my blood. For a liver that removes toxins and does so much more. For legs strong enough to support my body.
For my home, my bed, my safe and comfortable nest. For a canine companion whose warranty has expired long ago but who continues to be there for me.
For open windows and fresh air and birds singing in the early dawn. For a spiritual path that gives me the tools to both embrace my own life and acknowledge / accept my own inevitable death. For friends and community that will not let me slip too far below the surface.
And for a family coming together in the midst of our individual pain, sadness, fear, and anger to support each other.
As we bear witness and try to provide comfort, as my brother struggles to cope with his failing body, his loss of autonomy, and his own mortality, I am reminded of how much I have to be thankful for, and how often I perhaps take all of these blessings for granted.
It’s been a long couple of months and my time and energy have been needed elsewhere. It will be a little while longer. Looking to come back into my life with a renewed sense of purpose and commitment soon.
Subscribe to:
Posts (Atom)