Only when it’s dark enough can you see the stars

Given that I have been posting this blog every Sunday for over 13 years, regular readers may know my egg and chips story – please bear with me if you do. For many years, on my return from being away from home, and particularly if I was returning from overseas, the first meal I would eat would be egg and chips. Two fried eggs, baked beans, mushrooms, chips, two slices of bread and butter and a pot of tea. Brown sauce was an optional extra. However stressful or successful my trip might have been, the meal, the ritual, marked a return to a place of safety, of love and familiarity.

For some reason I don’t tend to do this these days, although egg and chips remains one of my favourite meals. I was reminded of this habit last week. I had taken a walk along the promenade, and stopped at one of my favourite places, The Shipwreck café bar. It is a great place to sit and people watch, or just to sit and be quiet and still for a moment or two. As I sat in the sun with a glass of the red stuff and a bowl of chips and mayo, my mind drifted to those egg and chips meals of old.  

Up to that point my week had been very stressful, busy, challenging and difficult. My mother, who lives with dementia had, after 13 weeks in an acute hospital, been discharged home with a wraparound care package. In the first 48 hours she had fallen twice, once requiring an A&E visit. My mother refused everything the carers tried to do for her, and was both physically and verbally aggressive. My dad WhatsApped me during one of the carer visits and I couldn’t believe it was my mother, who was screaming and fighting with the carers. This was a woman who had brought up seven children, fostered several more and at different times, cared for her many grandchildren. Sadly, in her hour of need, she couldn’t and wouldn’t allow anyone to care for her.

My dad stopped the carers coming, as he couldn’t stand the battles. The result was he tried to care for my mum’s needs, something he was not equipped to do and because of his age and frailty, it rapidly exhausted him. The long daily Facetime conversations I had with my dad during the 13 weeks of my mum’s hospitalisation became short, whispered conversations snatched a few minutes at a time, with my dad calling me from upstairs in their bedroom. Conversations with my mum reminded me of being in clinical practice, and eventually became one-sided, as my mum withdrew into herself. I knew that despite my dad’s desire to find a way to keep mum at home, the situation was deteriorating by the hour. I was spending a good deal of time phoning and emailing the social workers involved in my mum’s care, often having frustrating waits while people responded. I did have some success with a trainee social worker called Rhodri, who eventually went the extra mile in trying to help. I think his supervisor must have been patience personified, as he had to seek her permission before enacting decisions that we had taken in trying to improve the home situation.

Late Wednesday evening, I spoke with my dad and he looked and sounded dreadful. He was totally exhausted and had ground to a halt mentally and physically. Thankfully, my mum had gone to bed and was asleep. Very early the following morning I started emailing and leaving more phone messages. The home situation had broken down in only a few days, with a real risk of harm to both my parents.  I needed to find them some respite care. Rhodri agreed that the situation was unsafe and we couldn’t get to the weekend as things stood. However, before anything could be decided a new capacity assessment had to be undertaken. This was despite the fact my mum had, just 10 days previously, been assessed and deemed not to have capacity to make an informed decision about her care.

It was another anxious wait for the assessment to be done and to get the outcome. Early afternoon, I got a phone call from the social worker who had made the assessment, and who somewhat incredibly, told me my mum had capacity and they couldn’t provide any respite care. I almost lost my temper, but didn’t and asked her to provide the evidence that made her think my mum had capacity. She said she asked my mum if she wanted respite care and as my mum had said no, that was deemed proof she had the capacity to decide on her future care. I then spent 20 minutes getting increasingly frustrated by the woman’s intransigence, trying to persuade her that my mum and dad needed to be safe this weekend and that she had to help me make this happen.

Eventually, we agreed to ask my parent’s GP for an emergency social admission to hospital. Thankfully the GP agreed and after an eight-hour wait for an ambulance, my mum was readmitted to the hospital. Speaking with my dad the next morning, he was like a different man, and whilst the future remains undecided, we both agreed that mum was in a safe place. The week’s tension and stress seeped away, which was why a few hours later, I found myself sitting in that café bar watching the world go by. I did wonder if the self-confident me, with all my knowledge and experience of the health and social care world struggled to get things sorted, how would anyone without that experience manage to negotiate their way through the system. It was a somewhat sad and salutary reflection.

There is a lovely postscript to share though. The morning after my mum was admitted, my dad received a call from the senior nurse on the ward to say that his wife had a good night and was doing okay. She took the time to speak with dad and answer his many questions. My dad was impressed with the compassion and care she showed him. Later that day, the same nurse rang me and we had a lovely conversation about my mum, my dad and what the next few days and weeks might involve. It was the caring, kindness-filled conversation I needed to be part of at the end of a fraught week. You know who you are, thank you, kindness matters, always.