Caring without culturally appropriate support

 Brar-Orgill J (2023) Caring without culturally appropriate support. Journal of Dementia Care 31(5)20-21

Jagdish Brar-Orgill describes caring for her mother with dementia at a distance without culturally appropriate support, and shares the pain of her mother’s last days in a hospital ward without compassionate end of life care.

A year after my husband and I adopted our longed-for, amazing daughter, who has a rare condition, I gave up my career to become Mum’s carer. Following her diagnosis of dementia in 2017 (and in hindsight, Mum had been displaying symptoms since 2012), I was advocating for Mum on all fronts, being pushed from pillar to post by service after service.

Being a long-distance carer, I fell in between the cracks.  I wasn’t eligible for official support, nor could I be assigned an Admiral Nurse. There was no dementia pathway in Mum’s borough, so I was the coordinator for all the fragmented services. It became my full-time job.

It was imperative to keep Mum in her home but there was no culturally appropriate support available. I was constantly having to explain why Mum had reverted to her native tongue, having spoken good English. I was faced with mixed messages, with the GP telling me there was no care in the community, and being told otherwise by other professionals.

My pain, desperation and gut-wrenching crying was off the scale.  Stress and grief were my everyday norm, which took a toll on my mental and physical health, not to mention on my marriage. I firmly believe that the lived experience of carers like me should be an integral part of research, and should influence policy makers.

I recall being told by a senior official, when they discharged Mum from the mental health team, that it wasn’t worth raising my concerns with the clinical commissioning group, as it was then called, as to why there were no resources serving the South Asian community, as it comprised “white middle class people” who wouldn’t listen to my issues. I never got the time to follow this up, as I was constantly firefighting.

I endured conscious and unconscious bias. I was my Mum’s voice, and yet, if I questioned anything, as a woman of colour, asking health professionals questions while overseeing Mum’s care 24/7, I was deemed “aggressive”. My experience was that dementia services are Caucasian-centric. But dementia doesn’t discriminate.

I know many carers before me from marginalised communities have voiced similar concerns over the years and yet nothing has changed. We are still an afterthought, a tick box exercise for services and organisations.

I left no stone unturned to source culturally appropriate carers – even approaching Indian women in supermarkets, I was that desperate. I reached out to my community, Gurdwaras and even Sikh public figures – all to no avail. I trained, managed and guided 30 Punjabi Sikh carers, who knew nothing about dementia. Only three were compassionate and trustworthy. Mum was abandoned by absolutely everyone, except my sister and me.

I learnt about dementia the hard way and knew everything about my Mum’s health. I had to navigate my way around the care system to fight for all services, the speech and language therapy team, community matrons, district nurses and so on.  In 2019, I asked for a multi-disciplinary team meeting and a care plan, which amounted to nothing. Carers like me aren’t listened to or heard, despite managing every detail of our loved one’s care.

I had care professionals advising me to put Mum into a care home.  My response was always that it would fast track Mum to the inevitable, as her home of over forty years was her haven and held so many memories for her. Culturally appropriate care was essential in terms of language, music and food which she wouldn’t necessarily get in a care home.

Latterly, I was diagnosing Mum and knew when Mum had an aspirating attack, sepsis, oral thrush which was overlooked by professionals, and yet I still wasn’t listened to. I monitored everything in Mum’s house and knew Mum’s food and fluid in-take, or if she had engaged in activities. The lymphoedema I flagged up with palliative care was never addressed.  I couldn’t even cuddle Mum in the last week of her life in hospital, as her limbs were so swollen.

Community matrons stopped making home visits six months before Mum passed away, and over the same period, I was told on two occasions by a clinician from palliative care that Mum “didn’t warrant a visit” from them. These words still haunt me. Mum was displaying psychotic episodes in January 2022, and unbeknown to me, they were the beginning of the end.

My beautiful Mum passed away in May 2022. She had been denied end of life care. It was painful for Mum and traumatic for me and my sister. I’m still trying to manage the trauma of the failings I witnessed.

I had called Mum’s GP in April and explained that she had been coughing for months, and we knew what that could lead to. The GP gave me the same speech as he had in 2021, saying that he’d never come across a patient who had been afforded so many services and so much time.  In 2021 I told him that I had had to fight for all the services she had received, and pointed out that in the time it took me to call for an appointment to discuss my concerns, it would have been easier for him to drive five minutes down the road to visit Mum personally.

He reacted by suggesting I seek another GP Practice. However, when he repeated this same speech to me in April 2022, I remained silent. I told my sister I never wanted to deal with him again. When the GP visited Mum the following week when my sister was looking after her, he said he was far more concerned about my mental health than about my Mum. Yet at that point, she already had the infection that would prove fatal.

Three weeks later, Mum stopped eating. The kind carer couldn’t wake her up, and her oxygen levels had dropped dangerously low, so I dialled 999. The carer accompanied Mum in the ambulance. I texted her all the relevant information about Mum’s current health and drugs to show the consultant within A&E. I also spoke to him, and Mum was admitted. But if the palliative care team or GP had intervened at home, I wouldn’t have had Mum hospitalised as she had wanted to pass away in her own home.

I remember vividly, Mum was dazed and distraught, with tears appearing from the corners of her eyes. She hadn’t spoken for days. I massaged her head gently whilst she was sat upright, and kept on kissing her head and comforting her while crying.

I was with Mum all week and was asking the right questions as I always did, but it was as if I was paralysed in pursuing the answers this time. Mum was admitted on a Sunday, but I wasn’t able to speak to the consultant on the ward until after the bank holiday, and he was just so dismissive. My sister and I kept chasing the hospital palliative care team, but no one visited Mum for five days.

When someone finally showed up, she said she had skimmed Mum’s notes and in her opinion, Mum had six to twelve months to live.  My response to her was, “Mum has barely got six days, let alone six weeks!” Yet my words weren’t even registering with me!  I was on autopilot, as I always was, so I lost sight of what was unfolding right in front of me.

I don’t recall watching my Mum drift off on the Thursday night. It was only when I woke up at 4.30am on the Friday and alerted the overnight nurse, they realised Mum’s cannula had become detached. Shortly after, two separate consultants tried to cannulate Mum. They couldn’t, as Mum’s arms and legs were swollen, so they couldn’t find a vein.

At this point, I was still liaising with the secretary from the palliative care team at the hospice. I asked for the vascular assessor to insert a picc line (which delivers medication close to the heart) and had to wait until he started his shift at 8.30am. When this failed, and they tried the other shoulder, Mum’s blood pressure dropped dramatically. That’s when my sister and I were told Mum only had a few hours to live.

I had to plead with the nurses to move Mum into a side room. They couldn’t as the ward was busy.  I was distraught. The ward sister showed compassion, and emptied a side room. (Why hadn’t I approached her with my concerns before, as I had always done during previous numerous admissions?) An hour later Mum drew her last breath.

No one told me that Mum had reached the end of life, and so my sister and I were denied quality time with her at the end, as we were still chasing medical professionals.  The hospital ward just wasn’t equipped for end of life patients.

I’m crippled with layers of grief, having looked after Mum and micro-managed all her care for over six years, while watching her deteriorate from this cruel condition.  The trauma I witnessed, especially during her last days in hospital, layered with grieving the loss of my beautiful Mum – the injustice of it all!  I still feel I let her down.  The images in hospital haunt me every single day. My beautiful Mum deserved better.