Living with dementia magazine, April 2010

When Sylvia Gupta first started documenting her life as a carer on the Society's online forum, Talking Point, she had no idea her posts would prove so popular. Here, she writes about the value of the resource.

My husband Dhiren and I were married in 1963, defying family opposition to our mixed race marriage. In those days, mixed marriages were frowned upon, and lack of family support meant it was Dhiren and I against the world.

It never was a marriage made in heaven, but having to face adversity together strengthened our relationship and we formed a very strong bond.

In 2005, Dhiren was diagnosed with Alzheimer's disease. The following year, we were struggling. A Google search led me to Alzheimer's Society and from there to Talking Point. Little did I know it would prove to be so much more than just a forum.

Part of a community

At first, I just read what others were writing, and then I began to respond to posts (messages) I identified with. Here were people with similar problems. They didn't brush them aside; they knew they were real - they were living through them too.

People posted, I replied. I posted, they replied, and through the common bond of dementia, I began to make connections with total strangers, learning how they lived with dementia, building up relationships and feeling almost as if I knew them.

I was no longer isolated. I was part of a community, a community which understood.

A life in the day

I had continued to keep a record of our struggle on my word processor. One particularly difficult day, I decided to post the entry of the day. It was my first thread (conversation starter). It needed a title.

The back page of the Sunday Times magazine was once devoted to A Life in the day of... and was about people known and unknown who led interesting lives. I didn't see our life as interesting, but I did feel those living with dementia would understand our struggle.

So, A life in the day began, and I had no idea it would develop as it has.

My first post (4 June 2007)

'7.30am. Woke in a 'mood'. Got up, washed and shaved, refused my breakfast but helped himself to cereal, went out for the papers. Came home, vacuumed, asked me why I was grumpy, wasn't happy with my answer, went out again.

'Came home in a state. Hot, breathless, unsteady, in a panic. Had bought a return train ticket to Manchester and realized he only needed a single, as he wasn't coming back.

'I tried to calm him, but he kept backing away, saying he was frightened of me and had to get away.'

That first post received a number of replies from several members, all sympathetic and understanding. Some humour came into the posts and a sort of camaraderie developed. A nightmare of a day was softened by people who rallied around in support. 

I posted regularly, charting our struggle, offloading to people I had never met but who were always there. Although you aren't anonymous on Talking Point, you can feel anonymous which can help. If I had eye contact with people, I easily got upset.

Mutual support

New members joined Talking Point and entered my life. Many had been reading A life in the day so by the time they registered as members, felt familiar enough to be able to post to me as if they knew me. It was a wonderful building of mutual support no one could have envisaged.

I have learnt so much from others on Talking Point. I can post about a specific difficulty and almost immediately receive half a dozen suggestions to help overcome that difficulty.

Caring for someone with dementia is a heartbreaking experience. We all know things can only get worse. Living with this kind of stress day in, day out, week in week, out, can be soul-destroying. Many of us are housebound and, sad though it may sound, the Talking Point tearoom is our social life. It's good because you feel so isolated.

When Dhiren went into a home last month and I came back to an empty house, it didn't feel empty because I had Talking Point. I can post a message and know that someone at the other end will read it and offer support.

As my husband's condition deteriorates, two things keep my head above water. One is the strength of the bond we developed in the early years of our marriage, and the other is my friends on Talking Point.

Sylvia's thread, A life in the day, has been viewed more than 700,000 times. Sylvia's username on Talking Point is Grannie G. The number of Talking Point members hit 10,000 in February this year.

To follow or join in discussions on Talking Point, go to alzheimers.org.uk/talkingpoint