Coping with Dementia - it was heartbreaking when Peter was diagnosed with Pick's Disease

Grieving for the person he once was, Ann struggled to come to terms with the diagnosis before her family came up with a novel way of raising awareness of his disease.

“It was so very hard to accept,” she says. “I was angry and upset at the same time. But you don’t really have a choice, but to get on with it. You just have to change.

“There are so many different types of dementia.

"Peter has Pick’s, which is one of the rarest ones. I had to attend a memory course for six weeks and there was nobody else in the group with it.

"In the support groups we went to, it sounds awful to say, but there was nobody under 80 years old there.

“I just felt so out of place.”

Pick’s Disease is a rapidly progressive disease with no cure. It is also known as frontotemporal dementia, meaning that it only affects the frontal and temporal lobes of the brain.

Symptoms can be very similar to those of depression and include behavioural, emotional and neurological changes, making social interaction difficult.

Peter had been going to the doctor, who first thought he was suffering from depression, for more than two years, and an MRI scan finally confirmed he had the condition in December.

Peter and Ann’s grandson, 14-year-old Jack, plays football in the Southampton and District Tyro League, and when Ann heard that his team, Baddelsey Park Knights, were having difficulty finding a sponsor for their kit, she stepped in.

“I just thought poor souls don’t have a kit so we’ll do that,” says the 66-year-old.

“Peter really loved football, and we are a footballing family. We were always stood on the sidelines in rain, hail or shine, whether it was for the boys playing football or my daughter playing hockey.

“It feels like we are giving something back for all the years of enjoyment we have had from youth football.”

When Ann told her son, also called Peter, of her plan to pay for their kit – he suggested they contact Dementia UK and see if they could use their logo on the boys’ shirts.

“It was heartbreaking when Dad was diagnosed,” he says. “The boys were struggling to find a sponsor and this seemed like a unique way to raise awareness of dementia.

"I asked Dementia UK if we could use their logo and they supported us with the idea. It just seemed to be a really good way of making sure Dad still felt involved with football, after all him, and Mum, never missed a game when I played as a boy.

Baddelsey Knights in their new football strip

“In the beginning, it was very hard. But, we are all in quite a good place with acceptance now. We know that every day may not be great, but it will be the best day that we can have, and we’ve accepted that.

“It has been very hard for my mum though; she thought that she would be able to take it easy in retirement and in fact she is now working harder than ever looking after Dad.”

Ann, 66, explains how all the plans they had made for retirement have had to be scrapped, and new ones put in place.

“We had just recently retired and were both looking forward to travelling and taking it easy,” says the mum-of-three.

“Before Peter was diagnosed, we used to go on driving holidays every year. We really loved them and now we can’t go.

“Peter’s OK really, he doesn’t have anything to worry about, he gets told where he is going and he gets ferried around.

“But, he’s not the same as he was before. He loves watching old TV shows now, like Bonanza and Columbo. And we go line dancing now at weekends – there is no way he would have done that before!”

What is Pick’s Disease?

Pick’s Disease is a rare, progressive and irreversible form of dementia.

Dementia means that the brain does not function normally, and patients can have difficulty with language, behaviour, judgement, thinking ability and memory.

Like patients with other types of dementia, a person with Pick’s Disease may suffer from drastic personality changes.

Symptoms include: Depression-like symptoms – such as disinterest in daily activities or difficulty keeping a job, poor personal and social skills, abrupt mood changes, poor personal hygiene, compulsive, repetitive or inappropriate behaviour, withdrawal from social interaction, decrease in reading or writing skills, inability or difficulty speaking, or trouble understanding speech, increased memory loss, physical weakness and a shrinking vocabulary.