I think positively despite my husband’s dementia

THIS is Dementia Action Week, which is designed to highlight the help available for the 944,000 people in the UK known to be living with the disease and their families. ALEX CARTER reports on the services available locally.

PAM Soley doesn’t shy away from the reality of caring and living with a loved one who has dementia.

She says that seeing them lose their memory and recognition of previously familiar faces is painful.

Mrs Soley, 73, lives in The Close, Henley, with her husband, Peter, 74, who was diagnosed with dementia three years ago.

Mr Soley attends the Bluebells day centre, which is located at the Christ Church Centre in Reading Road, Henley, and provides social engagement, activities and care. It runs on Mondays and Thursdays from 10.40am to 3.30pm.

The Memory Café, which runs every Wednesday from 10am to noon at the centre, also provides enriching stimulating activities and socialising.

Mrs Soley says she would have been lost without the support from both services.

“It has made such a difference,” she said. “It has allowed Peter to have independence and me to have some time with friends and family.”

Mr Soley, who was in the Royal Artillery for 22 years, was diagnosed in February 2021 but his wife believes she had missed the acute signs of the disease for at least 10 years.

She said: “I remember one day when I was cutting the grass and I was looking and watching him a bit too carefully and I accidentally ran over the wire and cut the power. He didn’t realise that it was me that caused it and went to change the fuse in the plug, which he thought had blown.”

A month after Mr Soley was diagnosed, his wife was diagnosed with low-grade breast cancer.

The following year, Mrs Soley was diagnosed with uterine cancer and underwent four months of chemotherapy, daily radiotherapy for five weeks and a hysterectomy.

While she was undergoing treatment, her husband was looked after by local carers at home.

She said: “Peter didn’t even know that I was having treatment because I didn’t want to put him through that as he was already dealing with so much.

“The charity was so helpful in helping take the caring load off my hands because spending £200 a month on carers and things for his mobility as he suffers from arthritis was a lot to deal with at the time.”

Mrs Soley says caring for her husband is challenging but she tries to keep positive.

She said: “When we do go out together, which is quite a lot, he always says things like, ‘Where did you say we were going?’, which does hurt.

“At times he doesn’t recognise who I am and he can’t recognise his children or grandchildren but they have grown to accept his condition and understand it better.”

She encourages others who are in the same position to remain upbeat and stick by their loved one.

She said: “Try to get as much help as you can and for the love of god look on the bright side because if you don’t you just go under.

“When you’ve been married for 50 years you don’t just throw that love away, you have to stick together through thick and thin, even if it is painful at times.”

Another woman who has been diagnosed with Parkinson’s disease and is living with dementia said the services were invaluable to her.

She said: “It’s nice to do something else rather than sit in the house and watch TV. There are always so many activities to do and they make sure you feel welcomed.”

Siobhan Pratt, co-ordinator at Bluebells, said: “Dementia is an invisible disease that affects not only the person but the whole family, so everybody needs support, including children and friends, because they lose them not only in death but also in life.”

The day centre and memory café were invaluable to people living with the disease.

“They always go home with a smile on their face because they don’t have to feel like they are alone and there’s always someone they can talk to,” said Ms Pratt.

Dr Will Hearsey, a partner at the Hart Surgery in York Road, said people should look out for signs that a loved one may be developing dementia.

He said: “Depending on what part of the brain it’s affecting, it can cause different symptoms but memory loss is the thing people start to notice, such as forgetting names which a lot of us do day to day but typically it is something which is out of the ordinary like getting lost in places they know.”

The process of clarifying these symptoms is simple and easily accessible.

Dr Hearsey said: “There’s an element of denial from the patient and relatives and it’s difficult to deal with but the first point of call would be to look at the variety of online resources and charities which provide services and advice and have a chat with a GP as the next step.

“A lot of symptoms may not necessarily be related to dementia so it’s worth exploring with a GP before going down the dementia route. What would happen is the doctor asks simple questionnaire-style questions to check recall and short-term memory and if they can rule out other causes.

“If necessary, the patient will be referred to a memory clinic and sometimes for a CT scan.

“If you are caring for someone you often neglect yourself, so drawing on as many resources as you can get to manage situations, environments and triggers for someone who is living with dementia is really useful.”

To help reduce memory loss, Dr Hearsey suggests living a healthy and balanced lifestyle.

“Dementia is having an ever-greater burden on healthcare,” he said. “The hope is that there will be some treatments coming through but I still think that’s a long way off.

“The best way to prevent or reduce the risk is by eating well, exercising and keeping sugars and cholesterol down. A particular focus on cognition and hearing is also the key to prevention.”

Jane Parker, a Henley adviser at Dementia Oxfordshire, says it is important to highlight what support is available in the wider community.

The service provided by Age UK allows people with a diagnosis who do not live in residential care and are registered with a GP to receive help, advice and support from the charity.

Ms Parker said: “No one should have to feel alone or frightened and think they have nowhere or anyone to turn to.

“We need to ensure that there is plenty of information and support available for people living with dementia and ensure that social services have the resources, which is critical.”

For more information, visit www.dementiaoxfordshire.org.uk