Website offers new hope for lonely carers

Apr 10 2008 by Gregory Tindle, South Wales Echo

IT was a chance encounter on a train from Brighton to Cardiff that set Jill Grey’s mind racing and provided the inspiration for a special venture to help others.

Jill was joined by two others at her table and eventually the ice was broken and the three women all in their sixties got chatting.

With the small talk out of the way, the conversation turned to more serious matters and it was then the three discovered they shared a remarkable coincidence – each of them had a husband with dementia.

The women recounted their personal experiences and it was from this that Jill realised there was a gaping hole in the world of those who care for people with dementia – they had little or no contact with others who were in the same position.

Jill, of St Anthony Road, Heath, Cardiff, said: “We talked and talked. We swapped stories, some funny, some sad. Suddenly the eyes of one of the women filled with tears and she reached across the table to clutch my hand.

“In all this time,” she said, “You are absolutely the only person I’ve ever talked to who understands what I’ve been through, exactly what I mean.

"She said there was no support group in her area where she could let off steam and get some help and the only person she’d talked to outside the family was her social worker and me.”

It was from this emotional journey that Jill set about creating a way that carers could get in touch with each other to share experiences and recreate the atmosphere on that momentous train ride.

The result is a new website especially for carers, launched with the support of the Cardiff and Vale Mental Health Development Project.

It includes contact details of useful organisations and an easy-to-use message board where carers can get in touch with each other and share anything they have found useful as well as any frustrations or problems they are having.

“I thought that through the internet, men and women who are in the same boat could have an opportunity to talk to each other – it is non-medical and not for experts.”

Jill’s experience with dementia is through her late husband Chris, who died only a few weeks ago after eight years with the condition.

Married for more than 40 years, Jill started to worry about Chris when he was just 63 years old, and it all began with a road journey he had done many times before.

“We were driving from Dorset to Cardiff and Chris missed a turn-off at a roundabout. He then drove round once more but missed it again until I firmly pointed out the right road.

On subsequent car trips, Chris continued to lose a sense of direction. Jill then discovered he was regularly bringing home a pocketful of change. She realised he had lost the ability to recognise the value of different coins and was covering this up by handing over a note for all his purchases.

These creeping doubts about Chris, a businessman and army officer for 20 years, were compounded by Jill noticing that he wasn’t his usual outgoing, confident self and had become more introverted, quieter and withdrawn.

With the benefit of hindsight, Jill, 69, realises that as these events unfolded she knew deep down that things were not right but had nowhere to turn and no guidance as to what to do next. Her subtle prompting to Chris to see a doctor met with a blank refusal.

About three years later, Chris, who had previously enjoyed golf and squash, was eventually diagnosed as suffering from vascular dementia. But while his mind was gradually deteriorating, Jill describes her situation as like wading through a pea soup fog. She was no longer a wife but a carer.

“He had been a great big fit man who then couldn’t remember how to put on his socks or how to use a knife and fork. After a stint in a care home, Chris was eventually admitted to St David’s Hospital in Canton, Cardiff where he deteriorated to such a point that he lost his power of speech and could not recognise Jill or any of their three adult sons. He died last month aged 72.

“That is what happened to me and at times is was totally awful but at least I was able to join a support group where we could share experiences. That is what I want from this new website. It’s all about the thousands of carers out there who perhaps feel lonely, even trapped. To give them somewhere they can share their thoughts – just like the lady on the train.”

Jill’s new website is www.dementiacarers.com