My experience of 'helplines'

The first time I tried calling dementia-related helplines, I found that the people on the other end of the line lacked compassion, in my experience. They offered no sense of comfort and nothing constructive to help me. I thought these helplines were there to assist, but I discovered that they often provided more textbook responses, or the individuals on the line would vent their own frustrations. The lines were frequently unanswered; instead, I regularly encountered an answering machine message.

However, the one and only time I managed to get through to someone, my experience was far from comforting. It was a day when Mum's behaviour had changed drastically for the first time, and I didn't know what to do. This outburst from her was foreign to me; Mum and I had a wonderful relationship, and she would never act in such a way towards me.

Since her diagnosis, Mum had always hated it when I was on the phone, so it was difficult to try to remain in a different room from her while I took the call. When I finally connected with someone and explained the situation I was in, she paused and asked, "What are you doing to her?" I couldn't comprehend what I had just heard. "What do you mean, what am I doing to her? I am sat in my bedroom; she is next door in her room." The response was, "Well, she sounds incredibly distressed. What's happening there?" I replied, "You tell me; that's why I have called you. I need help. I don't know what to do. How do I handle this?" Her tone was far from comforting. Was she accusing me of something?.

After all, most family carers have no official training; I learned through life experiences and common sense. Our normal ways of comforting one another were not working, so if there was an official way to deal with this kind of situation, I wanted to know quickly!.

I ended up hanging up the phone and took matters back into my own hands. "Come on, Mum, coat on, we're going for a walk." I knew this was one thing that calmed her down, and luckily, it still did.