It was not unexpected once I realised what was happening and thanks to some internet research. But there was still hope that one final test (a liver biopsy) would show something else was wrong - something more treatable - and/or that the other conditions present were making it worse than it otherwise would be and that maybe they could be treated to alleviate her overall condition.
She'd had a ton of health issues and more than a cocktail of regular meds for years and last October she was in hospital for a month with a new condition. I remain convinced her discharge was delayed for no good reason - a home assessment by occupational therapy that was delayed.
But there were a couple of symptoms that I now know were maybe a sign of things to come although they were also side effects of some of her meds that we had previously observed to varying degrees. So who would really know?
As things worsened and she had a couple of unexplained falls, I remembered a referral had been made to a liver specialist following an observation by a doctor dealing with a kidney stone that there were signs of possible Cirrhosis.
I found that of the dozen or so symptoms, she was showing 8 of them and, further, a complication of Cirrhosis would explain another investigation already underway for a different problem. She was also showing advanced Encephalopathy which is described as confusion but is really so much more.
The prognosis didn't look good.
In hospital there were frustrations for all. My wife couldn't always find the right words to communicate nor could she sometimes understand basic things, although she knew who we were; husband, mother, son and daughter.
But in some ways that made it worse. She wanted things that she couldn't have. To go home. To go to the bathroom - to physically go, not to use the bedpan. We had to say no but she couldn't understand the explanations. I feared that she might feel we were punishing her in some way or that we didn't love her anymore.
She would retreat into some imaginary world and would suddenly say "what do you think?" and it was clear she believed she'd been talking with us and was just carrying on.
One of the tests that would have diagnosed an issue that materialised days later (too late?) and may have helped, she refused, saying her (late) father had appeared and warned her against it. She could not be persuaded.
The liver biopsy was refused at the last minute with her apparently believing that we, her family, were also having the procedure. It seemed that the tiny risk of complication was multiplied in her mind because there were more of us.
It seemed the treatment of this disease was hindered by its very symptoms.
The doctor made us aware that it didn't look good and that maybe it was time to just make her comfortable. I had to agree but there was still that one possibility from the liver biopsy which was being rearranged and the treatment of other issues.
However, by now, one of those treatments couldn't go ahead as she'd already pulled out her IV and was likely to do the same again. It was looking grim but we wanted to be as sure as we could be.
Two weeks ago today she was asleep just as she had so often been over the previous days but she was unresponsive when they came to give her the latest meds and I thought this would be the coma I had been expecting. We had to leave the room while they attended and revived her. Bells going off, people running along corridors etc.
They did manage to revive her but not without other complications.
Well that was it. No
‘need’ for the biopsy now – so we told the doc to go for the comfort/don’t
prolong it option and her records were noted accordingly. We stayed with her after they’d moved her to another room.
She was aware of us, still knew and recognised us and there was a bit of face and hand holding. And a few words. Then she fell
asleep again.
She didn't wake up.
