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.