Why talking about dying, matters
When Barbara Timlett became seriously ill with Alzheimer’s disease, her family were as prepared as they could be, thanks to open and honest conversations with the whole family and NHS teams about death and dying.
Amber Bond, 48, from Adisham, is proud to be Barbara Timlett’s daughter. She said: "Mum was born in 1950 and later embraced the swinging 60s and the bustling London scene. She had me and my sister Aletha in the mid-70s and in the 80s, she worked her way up from her role as an administrator in an estate agent to become a branch manager. She loved interior design and made everything herself – she aspired to be Margot from The Good Life but in reality, she was actually Barbara, because she was so thrifty and good with her hands.”
But during her final year of working and just before Barbara retired at 60, she and the family started to notice memory loss and other cognitive changes. Amber said: "Her last year at work was really hard for her as she kept forgetting things. She also seemed depressed which was not like her at all.”
After a series of tests, Barbara was diagnosed with Alzheimer's disease in 2018. Amber said: “As she became more unwell, looking after her at home with my auntie and my sister became our priority. We had discussed it with her in advance and we knew her wishes. Together, we managed. But as mum's needs became more complex we knew we needed more support.”
In the spring of 2023, as Barbara’s health deteriorated further, her GP confirmed she needed end-of-life care – which is when the Acute Response Team (ART) from Kent Community Health NHS Foundation Trust (KCHFT) stepped in.
Amber said: "They quickly provided us with a hospital bed downstairs, making sure mum's comfort and dignity were prioritised and providing her personal care. Their expertise, along with the district nurses, in managing her condition and offering invaluable advice at critical moments became a lifeline for us. They helped us to focus on being together as a family.”
With more people opting for end-of-life care at home, KCHFT is putting additional investment into training NHS teams to provide more support in the community. This includes recognising end-of-life signs early, managing patients at home and having open and honest discussions with the patient and their family about next steps.
Katie Latham
Community Nurse Katie Latham has been trained to be an end-of-life champion for KCHFT. She said: “The end-of-life care we aim to provide is focused on making sure everyone is comfortable and that includes the families too, not just the person who is dying.
“We try to empower families to feel able to look after their loved ones at home, knowing we’re available if they need us. We can provide the right medications and advice at the right time, while giving families privacy, dignity and peace. We also have an end-of-life specialist nurse on our team so we can contact her for expert advice.
“You’re only born once and you only die once, so we make sure families have the best possible experience.”
Amber concludes: “Talking about death was something we always did as a family. We had lists, notes and discussions about what each of us wanted. Death is a normal process, it’s part of life. Supporting a relative to die at home isn’t for everyone, it has challenges. Families need to be open and honest with each other and realise what can be achieved, with the help of the NHS. But the Acute Response Team and district nurses gave us exactly the right level of support, allowing us to take a step back and just be Barbara’s daughters and sister again.”
ReSPECT: Find out what it means to you
Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) creates personalised recommendations for a person’s clinical care and treatment in the event they are unable to make or express choices for themselves.
The recommendations for each person are created through conversations between them, their families and any health and care professionals involved, to understand what matters to them and what is realistic in terms of their care and treatment – including the option to die at home.
The ReSPECT process can be for anyone, but is especially relevant for people who have complex health needs and people who are likely to be nearing the end of their lives. You can speak to your GP about ReSPECT.
You don’t need to have a ReSPECT agreement in place to choose to die at home, talk to your healthcare team about what services are available to you and your family.
Preparing for end-of-life at home
Did you know our website has a section dedicated to end-of-life, with practical advice and support for patients and carers about what to expect, including wellbeing and finances, what to do when someone dies at home and who can help you with the process. Find out more about end of life at home.
