I have met some wonderful people in my role as AV, people with incredible strength and tenacity.
My introduction to MND was when my mother was diagnosed 12 years ago. She had bulbar MND and soon lost her power of speech and the ability to eat and drink without choking. It was a terrible time. I was horrified to see this fun loving and active woman disappear before me in the space of a couple of years and know there was nothing I could do except love and care for her.
When I gave up full-time employment I contacted the MND Association to find out what voluntary positions they had. The role of Association Visitor (AV) sounded right up my street. I completed the training and started almost immediately and now with 10 years' experience and contact with over 40 people living with MND, I am still enjoying the challenges.
My role is to offer caring, practical support to people living with MND and their families and to provide a link between them and the MND Association and other sources of help. However, a vital role is to be their friend and to be there for them along this arduous journey.
It is not only the person living with the disease that needs help and support, it is often the husband, wife or other family member who is the prime carer who needs help too. With attention focussed on the person with MND, it is easy to miss the carer who is struggling to cope with this mammoth task.
A few years ago I was asked to give telephone support to the wife of someone with MND. They lived some way away and there was no AV in their area at that time. They were in their early thirties and had a five-year-old daughter. The husband wouldn’t talk about his illness but his wife was desperate to talk to someone. We talked about once a fortnight, in the evenings, once her husband and daughter had gone to bed, sometimes for an hour or so. This continued for about three years until he died. I attended the funeral and met her for the first time, it was an emotional meeting.
I have met some wonderful people in my role as AV, people with incredible strength and tenacity. My visits are not always easy, some are exceptionally difficult, often tiring and emotionally draining. However, they are always rewarding, and there is support at hand. There is delight when a piece of equipment turns up or when I hear the laughter at a daytime get-together. It can be a lot of fun.
I am sometimes asked why I am an AV and how I cope with losing all these people. I remember visiting a lively and fiercely independent man in his fifties, who had lost the power of speech and mobility. The minute I met him, I saw something in his eyes, a look I will always remember. Each time I visited him he gave me that look, which said he appreciated our time together, I hope I reciprocated, because I felt it a privilege to spend time with him.