Former carer who now has terminal cancer urges people to talk about end of life with loved ones

A woman who discovered a lump in her breast while caring for her mum with dementia and didn't see a doctor for four years is urging others to talk about and write their plans for end of life.

Diane Thomas, from Carmarthen, cared for her late mum, Doreen, who had vascular dementia, after moving her from Yorkshire into her home back in 2021, but six weeks later discovered the lump.

Now Diane, whose mum died earlier this year, has been told she has stage 4 cancer, and has since prepared an advance care plan, power of attorney and do not resuscitate form with help from leading end of life charity, Marie Curie.

Marie Curie's 2Ts Advance and Future Care planning service funded by the Tywi Taf Primary Care Cluster of Hywel Dda University Health Board (UHB) involves a Senior Nurse working with GP surgeries and care homes in the Tywi Taf area. They support people to draft advance care plans, allowing them to think about, prepare and plan for their future care and end of life.

Diane is sharing her story as the charity finds many people in Wales are underprepared for the final chapter of life. Almost a third of respondents (28 per cent) to a Marie Curie survey have not given it any thought, while nearly 4 in 10 (38 per cent) do not put any plans down on paper. The research also shows a clear need to open the conversation, as more than a third (33.7 per cent) fear talking about planning for end of life, while one in three (33.6 per cent) believe they have plenty of time to arrange plans.
In Wales, the My Life, My Wishes document exists across all health board areas to support people with planning for their care at end of life.
Marie Curie also offers further support in its End of Life list on its website to support people with end of life planning. The practical checklist curated by clinicians sets out everything people must do to understand and plan for the final chapter of life, split into five categories: legal and money matters; people, pets and things important to me; advance care plan; my funeral, wake or celebration of life; and making and leaving behind memories.
Diane said: "It's important to me to have all this in place, so my children know and understand what I want. It was hard watching my mum, because she lived here with me, and I've also seen it with other members of my late husband's family, I've seen them going on and getting less able to do things, and I don't want to be like that."
In August, Diane saw a doctor at Priory Grove, Carmarthen, where her daughter works and received confirmation of the prognosis.
She was then put in touch with Diane Milner, Marie Curie Senior Nurse at the 2Ts Advance and Future Care Planning service.



Diane Milner, who was a district nurse for 32 years, said: "Advance care planning (ACP) is for everyone, at any stage of life, and helps people to think about, prepare and plan for their future care and end of life. It helps people to discuss and decide what is important to them, as well as sharing wishes with others. It means loved ones know what you want if you ever can't speak for yourself.

"It can be challenging for families to initiate the conversation, but my role as an outside professional means they can feel at ease in discussing challenging topics.
"Since taking on this role, I've recognised the value of future care planning in my own life and thinks it is a necessary conversation to have."
Dr. Kerry Phillips, Tywi Taf Cluster Lead and GP Partner at Meddygfa Taf, said: "(This service is) an important opportunity for anyone to record their future care wishes so that if the need arises, your expressed wishes are followed."
Jill Paterson, Director of Primary Care, Community and Long-Term Care at Hywel Dda University Health Board, said: "Advance and Future Care Planning is a vital part of ensuring people's wishes are understood and respected. The work Marie Curie is doing with the Tywi Taf Cluster is helping individuals and families have these important conversations, often at very difficult times. It's reassuring to know that people are being supported to make informed decisions about their care and to record their wishes with confidence."
Marie Curie supports people with any illness they are likely to die from including Alzheimer's (and other forms of dementia), heart, liver, kidney and lung disease, motor neurone disease, Parkinson's, and advanced cancer. The charity provides expert care and support in people's homes, in its hospices and over the phone via its free Information & Support helpline which is there for anyone who is affected by dying, death and bereavement.

To speak to the team about Advance Care Planning, please contact Futurecareplanning@mariecurie.org.uk