Charity offers couple a lifeline after devastating diagnosis

Graham and Elaine Smith in their garden.
Graham and Elaine Smith in their garden.

A couple feared they would lose everything they had worked for after a devastating diagnosis changed their lives forever.

Elaine and Graham Smith had spent much of their lives living and working abroad in exotic locations like Sumatra and Brazil, where Graham was managing director of a rubber plantation.

Graham Smith and community support worker Neil Dempsey.

Graham Smith and community support worker Neil Dempsey.

When they finally retired to Longframlington, they hoped to continue their active lifestyle, combining a love of travel with matters closer to home as committed Rotarians.

But it wasn’t to be. Their world came crashing down when, two years after being told he had Parkinson’s disease, Graham was also diagnosed with dementia in 2015.

Elaine, 72, said: “One of my first thoughts was that we could end up losing the house in order to fund the care Graham might eventually need.

“There seemed to be a complete lack of reliable information about dementia and I simply didn’t know who to turn to.”

Graham and Elaine Smith on their wedding day.

Graham and Elaine Smith on their wedding day.

However, Elaine was eventually referred to the Alzheimer’s Society by her local community mental health team and was introduced to its community support manager, Elizabeth Howliston.

As well as providing invaluable information that put Elaine’s mind at rest about her home and finances, Elizabeth also introduced the couple to its befriending service.

Now Graham, 73, enjoys regular trips out with community support worker Neil Dempsey – an arrangement that gives Elaine some welcome respite from her near round-the-clock caring duties.

The service, however, is stretched to the limit and Alzheimer’s Society says there is an urgent need for more befriending volunteers in Northumberland.

Elaine and Graham Smith with Alzheimer's Society community support manager Elizabeth Howliston.

Elaine and Graham Smith with Alzheimer's Society community support manager Elizabeth Howliston.

Elaine said: “I really can’t praise Elizabeth highly enough. Some of the information I was initially given by social services’ staff and other agencies was inaccurate and caused me a great deal of anxiety.

“For example, I was told my own income and savings would be taken into account when assessing Graham for the cost of care, which was completely wrong.

“As for health professionals, they tell you what’s wrong, but not what to do about it – so Graham’s diagnosis was a medical process, not a social one.

“It was only thanks to Alzheimer’s Society that I was able to get timely and accurate information about the support that’s available and how to access it.”

Elaine, a former head teacher at Delaval Middle School in Blyth, helped to rehabilitate abandoned baby orang-utans into the wild when the couple lived on the Indonesian island of Sumatra in the late 70s and early 80s.

Her life now is a far cry from those heady days, revolving, as it does, around Graham’s on-going care needs.

She added: “I still wake up sometimes in the middle of the night and I’m struck by the stark reality that Graham isn’t going to get any better. Dementia is not like cancer in that you can’t fight it – it’s a progressive illness and there’s no cure, so it’s forever.

“Obviously, this is not how we envisaged our retirement. We can’t do the things we want to anymore. And as for travel, we went to Rhodes earlier this year but I honestly think that will be our last trip abroad.”

For Elaine, the befriending service has been a lifeline. She said: “It’s only for a couple of hours once a fortnight, but it gives me some valuable down time when I don’t have to constantly think about someone else.”

Neil has worked for Alzheimer’s Society for three years and is acting as Graham’s befriending volunteer until a more permanent one is found.

He said: “I really enjoy talking to Graham about his past – he’s had an incredible life. We both love taking drives out into the country and visiting places of interest. We avoid main roads – we drive along one-track lanes and over cattle grids and Graham points out interesting views or identifies birds.

“It’s really satisfying to know you are making a difference in someone’s life, but the truth is we are desperately short of volunteers to befriend people like Graham.

“Volunteers can spend as little as two hours once a fortnight with people, and we pay their expenses. However, we ask for a minimum commitment of six months because there’s training involved, plus people with dementia need some consistency.”

DEMENTIA FACTS AND FIGURES

Alzheimer’s Society, the UK’s leading dementia charity, funds research into the cause, care, cure and prevention of all types of dementia and has committed to spend at least £150million on research over the next decade.

850,000 people in the UK have a form of dementia. By 2021, one million people will be living with the condition. This will double by 2051.

For details about befriending someone with dementia in Northumberland, call 01670 813255 or email Northumberland@alzheimers.org.uk
Ring the National Dementia Helpline on 0300 2221122 or visit alzheimers.org.uk