Alan Gray (57), who worked as a Quality Manager for a large IT company, was diagnosed with MND in January 2017 and Bev, who was a teaching assistant for children with additional support needs gave up her job to care for Alan.
Beverley (54), who lives in Denny near Falkirk, recalls when Alan was told he had MND, “From the day Alan was diagnosed I found it very overwhelming. I couldn’t sleep and lost my appetite. Reading anything and everything on motor neurone disease - it was all too much. It was at this point we decided that we would take the illness one day at a time and one obstacle at a time.
“At first Alan was able to work from home and I worked part-time in education. However over the last year and a half as the illness has affected Alan’s mobility and energy levels he has had to give up his work, and I decided to give up my job so that we could still spend time together as husband and wife, before I become his full-time carer.
“The first few years after his diagnosis nothing really changed. Fortunately we stay in a bungalow and have made other adaptations to the house to make everyday tasks easier for Alan, enabling him to still keep some independence for as long as possible. We have been very lucky as we were financially able to do this and having read so much, the theme of trying to be one step ahead of the game continually came up. Looking back, making the adaptions early was definitely the right thing for us to do.”
Many people caring for the person they love don’t think of themselves as a ‘carer’. However, it is important for you to see yourself as a carer to understand your rights and so you are aware of the help that is available. Beverley shared with us some of the support she has found particularly helpful since she became a carer.
She said, “I love the complementary massage therapy that is provided through MND Scotland. My 45 minutes of relaxation (falling asleep usually), allows me to recharge my battery. Unfortunately, because of coronavirus this service has been put on hold, so I’ll be looking forward to getting that back when it’s possible.
“I did once attend a local carers meeting, but I found that for me personally at that time, it had a negative effect. It may be something I may need in the future so I wouldn’t rule it out and it’s good to try things to find out what works best for you.
“For now the MND Scotland support group which I attend with Alan provides me with a chance to meet others in a similar situation and allows us to encourage others and share tips, experiences and usually who has the latest gadget. Again because of coronavirus we have a video support group every week instead, which has been really good. We’ve been meeting new people from all over Scotland and everyone affected by MND in Scotland is welcome to join – we’re a nice bunch I promise!”
While there is range of good support available for carers, Beverley highlighted there is still work to be done to ensure carers are valued and supported.
She said, “I think carers are undervalued financially. A quick calculation of the carers monthly allowance broken down to a 35 hrs week means a carer is earning £1.92 per hour. That’s assuming we only care 9am to 5pm, five days a week! It is not a situation that any carer chooses to be in, but through the love for the person we care for we just don’t have any control over our circumstances. I made the choice to give up my employment as I want to be able to spend as much time as possible with Alan, for as long as we can.”
Reflecting on her experience Beverley has found keeping a positive attitude and finding time for herself has helped with her transition into a caring role.
“I would tell other carers to keep a positive attitude. I think if the person you care for is having an off day just let them have it, don’t take it personally. Don’t lose contact with your friends. For me it helps me recuperate, a quick WhatsApp or zoom chat with the girls keeps me rational. I am also fortunate that as part of the church I have a weekly chat with my friends in our prayer group.
“It’s very hard to watch the person you love slowly lose their ability to do the simplest of tasks. Sometimes other people don’t realise that it’s not always possible to be as flexible as you would like. The person we care for will always be our first priority. Being able to switch of from caring and having sometime to just chill helps with my own health and wellbeing.
“Before lockdown I went swimming on a Monday morning and walking with friends on Thursday and Saturday mornings before Alan got up. I really miss these couple of hours for me time. Unusual for Scotland, but the lovely warm weather has allowed me plenty time in the garden instead.
“There’s also the challenge of being a family, trying to keep life as normal as possible. Our two boys have been furloughed and our daughter was home from University during the lockdown which has meant that we had an opportunity to spend quality time with one another, playing board games, online quizzes. Looking through old camcorder tapes. Making memories.
“Right now I want to spend as much quality time with Alan as his wife, as a family, doing as much as we can while Alan is still able to do. I do think keeping a positive attitude really helps with our health and wellbeing.”
If you are caring for someone with MND find out what your rights are as a carer and how MND Scotland can help make life a little easier. Visit our Carers Hub or get in touch by calling 0141 332 3903 or emailing firstname.lastname@example.org.
Craig Stockton | MND Scotland