"I realise that becoming an Association visitor gave me a sense of purpose and helped me to start again."
Becoming an Association visitor can be a rewarding, enriching experience.
People who train as visitors come from all walks of life. Some have no prior experience of the disease, but have many skills to support people affected by MND.
Others have been carers of family members with MND and their direct personal experience can be an added benefit.
Here, Association vistors explain what drove them to undertake the training to join our unique befriending service for families affected by MND.
I discovered the existence of Association visitors a short time after becoming involved with my local MND branch as a volunteer and fundraiser. It's hard to explain exactly why I pursued the idea of becoming an AV but in that first year following the death of my partner Ken from MND, I was determined to have as much involvement as possible in providing support of some kind to people living with MND.
The Association advises not taking up AV training for at least 18 months following bereavement - very sound and practical advice - so almost to the exact day, I completed my training and became an AV in the Merseyside region. The training is excellent and everyone I met had different reasons for wanting to become a visitor but everybody was enthusiastic and friendly and very keen to start work!
Although I am referred to people who actively request contact with an AV, many of my contacts develop through initial informal contact at branch meetings and fundraising events.
I like to think that because of my personal experience of MND, I am able to provide answers to difficult questions and support people and their families who are living with MND. It is a difficult role and the first time somebody whom I was visiting died was very difficult. However, there is a lot of support from other AVs, branch members and from staff at the MND Association's national office.
Three years later, I am still an AV and recently I also became a volunteer on the national MND helpline. I know that being an AV helps to provide much-needed support to individuals and their families but it has also helped me. Nearly five years after my own MND experience, I realise that becoming an AV gave me a sense of purpose and helped me to start again.
Peterborough-based Chris Glover is a retired speech and language therapist. Throughout her career she has worked with people requiring her help for all kinds of reasons. In 2001 she decided to use her skills to directly help people living with MND by training as a visitor.
"It is good to know that you can make a difference, however small, to the life of someone with MND", says Chris. "Once you have built up a relationship with them, in a very small way you can affect the quality of their life. They know you will go in and keep going for as long as they want, accepting them for how they are.
The amount of contact Chris has with the people she visits varies enormously.
"I find most people don't need much support for most of the time. There one or two who need me more - it could be helping to solve a practical problems or they could be tired, distressed and want to talk."
Chris believes the comprehensive training programme worked well for her.
"As a professional you're used to sorting out the problems because that is your job. The training made me look at what I did in certain situations and consider better ways of handling them. As a former speech and language therapist I have had to be careful not to try and sort things out myself - instead I make sure I go back to the current health and social care people who are responsible for the patient."
Chris sees her role as visiting the family, not just the person with MND.
"Sometimes the carer values your support just as much and even after someone has died I keep in touch with the family. We're there for them too", she adds.
Geraldine’s father Alec Shail died from MND 11 years ago, and at first he stayed at home.
Geraldine stepped in and moved both her parents to her Isle of Wight home, when her mother began to find it difficult to cope.
“We were lucky as I was running a small hotel at the time, and we had built a self-contained flat, so my parents could still have their own privacy while having us on hand to help,” says Geraldine.
“Dad managed pretty well but as the MND progressed he lost his speech and the ability to write. Two years after his death, my mum died from cancer. After she died, I felt the need to do something and although cancer is a horrible disease, I felt the impact of MND was far greater. In those days, there was no local branch or access to a hospice. We just had to cope somehow.”
Geraldine offered to be a visitor. The training was different then and she trained over several Saturdays and has been a visitor since 1997.
“Although I didn’t have any specific professional experience, being a hotelier meant that I was very used to dealing with people in different situations. I also had a strong faith which helped me through bereavement situations.”
Now Geraldine and fellow Isle of Wight AV Ann Marchant between them are in touch with seven people on the island with MND.
“I think the experience of caring for Dad probably gives me more understanding of the emotional side of MND, an understanding of the changes and challenges families affected are going through,” says Geraldine. “Experience of the physical side of the disease and knowledge of where to go for help has gradually built up through experience. No matter how much training you have, there is no substitute for doing it for real.”
Ann and Geraldine work as a team, running their own island MND helpline from Geraldine’s home.
“It works very well. Both of us visit specific people but we make sure each other knows how they are getting on, so that if one of us is away, they don’t get neglected.”
Like the other visitors, Geraldine uses several methods of contact – telephone, home visits and email.
“If we know about someone newly diagnosed, I ring them as soon as possible and then arrange to visit after that. Often, when you’re diagnosed, you don’t know where to turn, so a visit early on seems to help.”
“It is a very rewarding role. It gives me a tremendous boost when I have done something or made a difference. We always visit on the person with MND’s terms. One lady I visit has never wanted MND mentioned but now she has come to terms to her diagnosis it has unsettled her and we are pulling out all the stops to address it.
“One widower I visited had his phone numbers stored in the phone memory and when I realised I was second on his list after his daughter that made me feel very humble, and grateful that he valued my role.”