This post is a condensed version of scribblings, notes and letters written over the past year – more as a way for me to make sense of all the efforts expended to support an elderly person navigate the care system in the UK. Some of the details are already growing hazy, while some, I would rather just forget. This is part of a series of posts.
A week had passed since my mother’s hip replacement operation, and the physio team had successfully gotten her up and walking to the door of the ward. Anyone who knows my mother would be amazed at this progress! However, my mother’s mental state did not seem right and I flagged this to staff. In parallel, the medical team noticed something in her charts pointing to closely monitoring infection. I continued to chase for daily updates, as my mom was not her usual chatty self.
The ‘ah-ha’ moment came one day when after two weeks of being advised that they could not seem to find the source of an infection (later to be the same sepsis they picked on day 1) that was likely the cause of her cognitive state, I showed them a wound on the leg none of the doctors were checking (yes, apparently the ortho consultant and his registrars all congratulated themselves on their find! Not only was there a prominent wound, hot and red, it was the same wound that had caused her fall (and sepsis).
In the moment, I couldn’t decide whether I was overjoyed I had apparently solved the case (sadly, no), or if I wanted to scream.
The team increased her antibiotic dosage, and that took us all down a dark path. My mother’s delirious state become more pronounced, (her often being convinced she was actually dead) and the ward staff in the latest rotation, did not think anything of it. Six months later, having researched these symptoms extensively, I discovered NICE guidelines around diagnosing and treating post-operative delirium and extracted a very grudging admittance from a geriatrician (I had to specifically ask for one given my mother’s ‘frequent flier miles’ in the system) that the sad state of events which started in January this year could have been avoided.
In any case, after being unable to identify the source of infection, antibiotic dosage would have to continue indefinitely. And with it came a loss of appetite, nausea and weight loss. But they deemed she was medically fit and soon discharged her to a community hospital to recoup before coming home. The first two weeks of success post-operation were soon forgotten as nausea, vomiting and weight loss took over the narrative.
I briefed the community hospital with the entire (almost 9 weeks by now) history, and tried to get the physiotherapist involved immediately to avoid further loss of mobility. However, the nausea and vomiting continued, as did the delirium (which was just ‘age’, according to the doctors). The community hospital team, finding that she was too unwell to be with them, sent her back to A&E less than 72 hours after she was admitted.
I received a call from an A&E doctor, again to ask me about my mom (a patient who was discharged earlier that week after a 6 week stay at the same hospital). Her name, symptoms and conditions remained the same, but since no one had time to read what their colleagues had painstakingly written, it was again important to ask me for a detailed history.
Now admitted to a gastric ward for the nausea, my mom was put on a feeding tube. Someone who used to love food, wasnt able to eat anymore, had already lost 10 kgs since her operation and the gastroenterologists had no clue. A few weeks and daily pep talks and pleadings from me later, she was improving and was discharged again to community hospital. All for the same cycle to start again and she was sent back to A&E. Another few weeks later in a different ward, discharge was being contemplated despite no one having a clue as to the ‘why’.
By now, 25kgs had been shed and she barely ate much, talked less and was a shadow of her former self. This time, in response to my regular ‘update’ letters to the multi-disciplinary team (MDT), a geriatrician was finally part of the discharge conversation. Someone none of us had met before. And finally, after months of asking the same question, a grudging acknowledgement that medication may have led us all down the wrong path in January. It’s easy in hindsight to find a better way. But I dont believe anyone could run away from the reality that without a point of continuity, care can slip between the cracks. My mother was lucky to have me and the family, week in and week out, fighting her corner. Many families we came across in the wards during this past year, did not have this luxury.