Honiton Carer’s Winnie Cameron: ‘I’ve been surrounded by dementia all my life.’

Winnie Cameron runs Honiton Carers Group, and she spoke to Nub News about what why she is so passionate about helping unpaid carers.

The group supports unpaid carers through weekly face to face meetings and email and telephone calls. Winnie organises training, signposting, referrals to Devon Carers, day trips, social events and activities such as Arts and Crafts, walking and musical activities.

Recent activities have included a boat ride on Tiverton Canal, a trip to Burrow Gardens and pottery at Thelma Hulbert.

Winnie took over Honiton Carers in 2014 and there are now more than 80 carers on their books. The group sessions are free to attend (apart from when there is a paid activity) and everyone is welcome.

Winnie is also a Devon Carer Ambassador, and she represents all Carers at Devon Carers quarterly meetings, as well as attending several of Devon Carers Specialised team meetings, such as Dementia and End of life. She also volunteers with The Memory Café.

"I've been surrounded by dementia all my life."

Winnie's mother

Born in Denmark July 1944, Winnie left school at 14 years old. She completed a four-year apprenticeship where she studied general office work, bookkeeping and shorthand. Keen to improve her English, Winnie moved to England to work as an au-pair. She loved England so much she never left.

Winnie started working in catering and she has run pubs and hotels in Devon for 35 years. She has lived in different parts of the UK but settled in Devon in 1971 and came to Honiton in 1988.

She married Ewen in in 1967 and had two sons – Mark, who was born in 1968 and Steven who was born in 1971.

She first encountered dementia when she was 12 years old. Her maternal grandmother was moved into an institution and Winnie visited her each week. After this early exposure to memory loss, Winnie's life continued to be affected by dementia and speech challenges caused by strokes. 

Winnie's husband, Ewen, had cousins affected by Parkinson's Dementia and memory loss, one of whom spent many years at The Bungalow in Honiton.

She said: "He received wonderful care from the very professional staff there. Had we known then what we now know about Dementia we could have been of much more support to his wife and family, who were all seriously struggling during this sad period."

In 2003 Ewen suffered a stroke and it left him with Vascular Dementia, a condition that severely affected his abilities to communicate. However, Winnie wasn't given enough information about what had happened, which she found very difficult.

Winne and Ewen on their wedding day in 1967

His vocabulary was affected in ways which Winnie struggled to understand at the time. For example, Ewen would often say the opposite word to what he meant to say, and this would lead to frustrations.

Ewen recovered well enough to drive but caring for him continued to pose many challenges for Winnie. For example, he was unable to go to the shops alone because he found any change in layout or routine was too difficult for him and he would return home distressed.

Just three years later, in 2006, Ewen suffered from a large stroke which left him completely paralysed and with severe brain damage. He was fighting for his life for many months. He spent three months in the RD&E in Exeter and then was supported by the Stroke Unit in Budleigh Salterton, which has now closed.

Despite the concerns of the health professionals, Winnie insisted on bringing Ewen back home so she could look after him, and she spent many months proving that she was able to be his main carer. Ewen needed help with everything, including feeding and transferring into beds or chairs.

That said, Winnie and Ewen managed to get out and about together and enjoy their time together. She bought an adapted car (which is now used by TRIP) and enjoyed events at The Honiton Memory Café, which Winnie described as a lifeline.

In 2007 Winnie's life was again affected by sudden illness. Her mother, known to everyone as Tulle, was on holiday and staying with Winnie when she suffered two large strokes. The doctors told Winnie she would never be able to live alone again and would need full time care. She moved in with Winnie and Ewen.

Winnie was now full-time carer for two people in her home and she was forced to give up work. She saw an advert for Dementia training at Honiton Hospital and recognized the symptoms, realizing that both her mother and husband had Vascular Dementia.

She started to attend training courses and carer 'pamper days', learning that if she needed something she needed to push for it as nobody was going to help her or explain anything to her unless she asked.

"I started to learn more about benefits Like Attendance Allowance, Council Tax disregards and how the system worked.

"I soon learned that I needed to be very determined and strong as no one would offer or explain anything without me asking, or in fact begging, in a rather strong manner."

In the final few months of both her mother's and husband lives, she received support from Hospiscare, who she said were wonderful: "The NHS has so much to learn from the Hospiscare concept of caring.

"It enabled me to keep both my mother and husband at home throughout their illness and they both died at home in their own bed, which was all each of them ever wanted."

Honiton Carers offer local carers a much-needed break from their duties and a chance to chat to other people in similar circumstances, and Winnie knows just how important this is. She particularly enjoys meeting people and offering them support making friends and giving to the community.

She said: "It provides some respite for the carers, as well as support and friendship and help to reduce their isolation."

Winnie encourages anyone who is concerned about a friend or relative's memory or other cognitive ability to seek a diagnosis as soon as possible: "Having a diagnosis is essential for better support for both carer and cared for.

"There is so much help available out there, it is just a case of knowing where to go for it. The professionals and volunteer groups like Honiton Carers offer invaluable support."

"I love running the Honiton Carers. It is, more or less, my life."

If you're interested in becoming a volunteer or you are a carer who would like to attend the sessions or find out more information, you can contact Winnie Cameron on winniekjaer@beinternet