Vivian is a former primary school teacher and she met property developer Michael (75) in 1974. They married in 1975 and have three children, Jamie (40) Siobbhan (38) and Hannah (35), as well as three grandchildren, James (8), Eva (2) and Michael (11 months).
Their lives were turned upside down when Michael was diagnosed with MND – a terminal illness which stops signals from the brain reaching the muscles – in October 2009. MND can cause someone to lose the ability to walk, talk, eat, drink and breathe unaided.
Vivian said, “I first noticed that something was wrong around Easter 2007, when we had some warm weather. Michael was wearing sandals and he kept tripping up; his big toe had stopped working. I accompanied Michael for his last appointment with the G.P. as he was back and forward to different ones over a few years.
“He was told he was ‘as strong as an ox’, but after a holiday to New Zealand, he went back to the G.P. and was referred to a neurologist.
“Nine months later he was diagnosed with MND. We were both stunned, so no words were spoken on our return journey.”
The average life expectancy with MND from diagnosis is 14 months, however Michael’s illness has spanned eight years. He was diagnosed with Primary Lateral Sclerosis (PLS), a rarer form of MND. Michael joked “My mother always told me I was special.” As Michael’s carer, Vivian’s responsibilities have continually grown as the condition progresses and he has become increasingly disabled.
Since his diagnosis with MND, Michael has moved from using walking sticks to an electric wheelchair and has lost the ability to speak, to walk and to feed and dress himself. Michael was fitted with a feeding tube in 2012 and he uses an iPad to communicate. His condition also leaves him struggling with day-to-day issues such as drooling and incontinence. Eventually he had two carers coming to the house four times a day.
“Michael is very positive and is always up for a challenge. He has a great sense of humour – he is one of life’s characters. Technology has been a godsend but he does fear the locked-in syndrome.
“He will stretch his capability to the Nth degree, which can be extremely frustrating for the carer.”
MND Scotland has provided support for the couple over the years. Vivian attends the charity’s support group in Inverness and has also used their counselling service. She said “Counselling really helped me to come to terms with Michael’s diagnosis. It was an outlet to share my fears and anxieties with someone outside my own family, and help me deal with these head on.
“Going to MND Scotland’s support groups allows me to talk to other carers and also help others in a similar situation.”
As the years have passed Vivian has taken a greater and greater share of the burden as Michael’s carer, placing her under intolerable stress and leaving her struggling to manage.
“We have lots of ups and downs like in any marriage and there are lots of family issues. I feel more like a carer than a wife.”
After nearly eight years as a carer, Vivian was given a lifeline in July 2016 when Michael became a resident at the Cathay Care Home in Forres, where he receives professional support. The move lifted an enormous weight from Vivian.
The impact of Motor Neurone Disease has not only physically disabled Michael, but has also trapped Vivian, who is now fraught with worry over her own health as a carer and what the future holds for her relationships with Michael and her family.
“Initially I was positive, but after 7 years sometimes it feels impossible. He was told he could have a normal life span. Both parents died at 94. He is only 75. I am 70 and I’ve tried to deal with things as I may go first, hence he is now in a nursing home.
“Everything has been a challenge. Pre-empting issues, finding a car to take him out and how to have respite.
“Every Christmas family come for three weeks and he is the elephant in the room. It all revolves around him. Resentment starts to build up; unless your life is over too, and you are a martyr.
“Michael is inspirational, but that is not my personality. There is no light at the end of the tunnel. I do my duty; I visit and prepare things to say as using the iPad to speak is not normal conversation.
“Cancer may be abhorrent, but there is a definite outcome – getting better, or quick decline. This slow death to a locked-in syndrome is intolerable!”
Recognising the pressure Vivian is under on a daily basis, Michael said, “Everything has been challenging, it was like pulling teeth getting advice at the start.
“Laterally my wife was at wits end with the never-ending phone calls to professionals, not being taken seriously when I needed help after my feeding tube operation and nearly having renal failure, then Deep Vein Thrombosis.”
Despite the struggles during his progression with MND, Michael remains thankful for the time he has been given to enjoy his family.
He said, “I have a lot to live for as I can now exchange emails with my grandson James who lives in the USA.”
Although the burden of being a carer has been extremely difficult for Vivian it is not all bad, “I do not want people to think that life is all doom and gloom. We do have laughs. I guess as each stage unfolds we will survive it all, and keep our sense of humour. I think that’s the fundamental crux of the matter. We laugh together at the ridiculous situation we are in, knowing what was before and what it is now. So, we’ll see what comes next in our journey.”
Carers Week comes just a week ahead of MND Awareness Week (19th-25th June). Today (Monday 12th June) MND Scotland have launched a Carer’s survey to gain more insight into the struggles of people caring for someone with MND and to identify the key challenges faced by people like Vivian. MND Scotland will use this to inform their campaigning and lobbying efforts to secure greater support for carers in Scotland.
Susan Webster, head of policy and campaigns at MND Scotland, said, “Vivian’s incredibly honest, frank and moving account of life as a carer of someone with MND is humbling. As a charity, we will continue to do everything we can to support those with the illness, their carers and families. We will also keep striving to ensure that both Scottish and local government know what they need to do to improve the lives of those affected by this devastating illness.”
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