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 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.
The summer of 2018 had almost passed us by, and my mother’s tour of hospital wards and clinical mediocrity was now in it’s 8th month. My startup had become a sideline, family routines had adjusted to dealing with this endless cycle of pushing healthcare staff to do their jobs. My family supported me while I fought in my mom’s corner.
By now, 25kgs had been shed and she barely ate much, talked less and my mom was a shadow of her former self. Our home was assessed for suitability and it was deemed that a social care setting would be best for us all. I wont go into the process of finding a care home, nor the process of figuring out how to pay for it. Another time as that is a story in itself.
‘Fit for discharge’ and having undergone a care needs assessment, we had accepted that my mother was no longer able to live with us and needed to be in a care environment. We were fortunate to find a care home near us where she could be visited daily and her grandchildren could pop by after school.
Lovely room, lovely staff, including a beauty salon. They maintained less care staff and she had to be somewhat mobile and get in and out of bed herself etc. She was fine for a few days before we got a call – she wasn’t moving, and was non responsive. The paramedics had been called. I rushed over to begin the first of many medical history briefings that evening as she was once again sent back to A&E. The care home administrator rushed to the ward the next day to inform me that they couldn’t take her back as she wasn’t well enough. In the meantime, the current ward staff were looking for the source of the problem, which turned out to be a combination of discontinued medication (they forgot to reinstate when her antibiotics course finished) and a mild infection (treatable ironically, by mild antibiotic).
She was now no longer able to get out of bed herself nor walk without assistance. It was months since she walked on her own and none of the physios even wanted to try mobilise her – hence we were asked to accept this new reality. It didn’t help that by this stage, she was so afraid of any pain that bravado-driven assurances that she wanted to be active were soon replaced by dramatic cries of pain when she actually engaged!
Once again, she was ‘fit for discharge’ and this time, the closest facility for her given her need for hybrid nursing care, was a 30 minute journey beyond the hospital. But with no choice closer to home, we gladly took the 45 minute journey if she would be happy. And she was, with sunstreamed windows and a feeling of freedom.
After 11 months since she left home, bouncing around noisy hospital wards, my mom’s new room is serenity. Staff come in to look after her and chat (often using this as a rest point between duties) and she was surrounded by pictures of faith, family and a nice big TV! Her personality gradually bounced back, as has her chattiness.
Today, as we close this year, she is bedridden now and doctors, nurses – everyone has accepted this and no one tries to get her mobile any more. But she is happy, and comfortable. And we’ve all settled into a routine of visiting her. The home has some technology and demographic challenges (she is the only brown person here and their cooking is aimed at folks who arent used to exotic) so I’ve tried to find workarounds on indian meals I supply, as well as communication solutions for someone with dementia and shaking hands in a building with no wifi and almost no mobile coverage! My 1-2 daily calls not only keep her alert, but also let me know if I need to alert the nursing staff to anything.