Our Managing Director, Deborah Evans shares a candid insight into the final moments with her mother…
I’ve always been struck by the title of Chinua Achebe’s novel Things Fall Apart.
My mum died recently and in her case it was much more like Things Come Together. Mum lived in a brilliant Brunel Care home called Saffron Gardens. The care home is an amazing place where people, like my mum, with dementia are cared for by first class staff.
Right up until January, Mum was able to visit us at home and enjoy our company. However, in more recent weeks she stopped eating. She would hold my hand and gaze up at me, or touch a colourful scarf I wore.
As her body became weaker, infections would start to impinge on her health. The staff and I would try to discover what was wrong with her. We used all our foibles to try to give her medication or take her pulse, temperature and, most challengingly, her blood pressure. She was highly resistant, not understanding the strange sensations. It’s one thing to let your daughter put a temperature probe in your ear, but another when she starts squeezing your arm! We had a secret weapon; a kind-hearted Polish team leader from the other unit would come over and give my mum a big hug and tell her that he loved her – and then quickly slip her liquid medicine down her throat.
This kind of deterioration isn’t rare, which is why colleagues in Kent Surrey and Sussex AHSN have a ‘test bed’, which aims to harness technology to address some of the most complex issues facing patients and the health service and help support people with dementia at home.
Our team in the West of England are also working on how to take a complete set of vital signs and calculate a National Early Warning Score (NEWS) from a person who doesn’t easily comply with examinations and tests. We are also looking at ‘wearable’ devices, which can take and relay vital signs from people in their own homes to staff working in rapid response teams, out of hour’s services, GP surgeries and ambulance services. This would greatly help the GP, paramedic, out-of-hours and nursing home staff to understand how best to help a person who can’t describe and can’t comply with care.
At a time when the NHS is so stretched, I was so proud that her GP practice at Lawrence Hill Health Centre, BrisDoc, and the South Western Ambulance Trust fielded skillful and clinically astute staff to support us in helping my mum die at home surrounded by her family.
The evening before she died, we sat around her bed and sang songs they would sing at ‘Singing for the Brain’ and Mum would lift her arm as she recognised them.
The love and care of women of every colour and nationality at Saffron Gardens care home, and of committed NHS professionals, meant that everything came together for my mum at the end of her life.