This post is a condensed version of scribblings and notes I have taken 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 the first in a series I have broken down into more digestable segments.
The elderly person in question is my mother, who as many informal carers in this country and around the world may have observed with their loved ones, found herself slowly diminished within the complexities of daily lives of those around her. While she depended on community transport to take her to the local drop in centre where she could meet with others and chat, she maintained some level of independence, being able to take the bus, manage her GP and the pharmacist. Until the day she fell and broke her hip, 10 years ago. That day, everything changed.
Two botched hip replacement operations, an infection, 6 months without a hip and a further re-operation, we’d managed to get her walking at a snails pace to the gate for pick up to the centre. Four years passed through a revolving door of physiotherapists, but after each intervention, we settled for a lower level of mobility. Whilst physios were given full permission to hard taskmasters to help reach full recovery, my mother had a low pain threshold and a well-honed ability to locate the sympathy spot of any practitioner when she got bored, tired or just felt lazy. As a result, recovery after each operation was slower and longer and while these already busy physios comforted themselves they were doing all they could, their patient was visibly downgrading.
Each year, our expectations reset to a lower level, and my mother had to cope with her own diminishing abilities, while trying to navigate her own emotions and confusion – denial, shame, anger, futility and dependence on her family. At her peak, she was a force of life who inspired many around her, including my own friends. She moved from public prosector to small court judge to a senior panel lawyer litigating for the government. Now, an increasingly fragile person declining faster than her age, lonely, bored and inactive, she was reliant on her family and the support of others.
In any case, by the end of 2017, I was managing a batch of disparate and disjointed services often at the same hospital – requiring me to set aside 1-2 days a week to accompany her to these appointments. In addition, each clinic would add to the already long prescription list, which over time, began to expire in phases. As a result, she was on the phone almost daily to ask the pharmacy to request the GP to renew this or that medication. In hindsight, we should have let this go as I think the daily chats actually gave her one more person to talk to as her circle of friends continued to shrink. Instead, the fixer in me did a physical stocktake on a spreadsheet and then created a chart projection of when each medication would expire to enable us to get ahead of the curve.
Over time, I was actively managing all clinic pathways and keeping the GP in the loop. A medical practice, incidentally, which was in special measures and had already closed down our local branch. My mom’s official ‘named GP’ had not seen her in probably months, and I as the informal carer and medical whisperer’ had to summarise and explain facts each time we met with someone from either primary or secondary care. The latest visit of the week that changed the shape of her decline, was from a locum who had to be pushed to treat for infection, rather than try pull the usual “it’s just her age” nonsense on me.
Anyway, upto then, it was all still generally manageable, and my mother was content in her armchair by the radiator in her small cosy room. I would go through my mix of pep talks, admonishments, and encouragement to try to keep her spirits up, and morale ebbed and flowed. But, overall, we worked within some invisible equilibrium.
Unfortunately, the latest infection wasn’t caught and treated quickly enough and my mother’s brain was still operating at infection level, rather than her average baseline. And being slightly disoriented, she had a fall, a few steps away from her bed. As one of her many services was a fall clinic, we tried to see if she could get herself up. When it was clear she was not only non-responsive, but relatively immovable (mom had this uncanny ability most aikido practitioners strive for – all weight transferred to the ground), we called for help.
A really lovely first responder arrived promptly and was given a medical history, with her taking notes. Then the paramedics arrived and the information had to be repeated again, first to paramedic 1, then paramedic 2. As with all the various clinical services I navigated for my mom, the information and continuity had to come from me, the informal carer.