Widowed to Motor Neurone Disease: Rachel’s story
June 2025
When WAY member Rachel’s 45-year-old husband Mark was diagnosed with Motor Neurone Disease (MND) in 2020, she became his full-time carer and as the 6’2’’ former Royal Navy specialist deteriorated before her eyes. To mark Global MND Awareness Day, Rachel shares their story…
We knew from that moment Mark was diagnosed with Motor Neurone Disease what the outcome would be. It's not like other diseases such as cancer where it's possible to find a treatment if you get an early diagnosis. It was frustrating at that time that Mark's diagnosis was delayed due to the coronavirus pandemic but whether he had an early diagnosis or not was irrelevant.
That's why it's important we raise awareness of MND and get funding for research. We need to find a decent treatment for MND and, eventually, we need a cure because it was the most horrific and traumatic thing to watch him slowly die for two years. Bit by bit everything was taken away from him and, by the end, he was completely locked in.
Five months before he died, he had not movement at all, apart from being able to blink his eyes. His legs went first, and then his voice and his swallowing and then eventually he lost use of his hands and his arms.
The essence of him didn't change; he was still Mark. He was completely remarkable and the most gentle and loving man. He had such a graceful acceptance of the whole disease. He was aware of everything that was happening to him, and he could feel his body just deteriorating. I was losing my husband literally in front of my eyes…
I remember realising at one point that I didn’t feel like his wife any more. I felt like his carer. And I actually became his voice too, advocating for his care when he no longer had a voice.
The thing about MND is you don't get a chance to be sad about all the things that are lost along the way as you are so busy dealing with the next thing. You always have to get over something else.
It meant I never got a chance to be really sad about the fact I couldn't hear him say 'I love you' anymore or that he couldn't hold my hand or give me a cuddle. You don't have a chance to grieve for those things as you are so busy doing everything that needs to be done. It was an absolute privilege to care for him but the disease took him slowly, insidiously and traumatically.
Mark died at home, like he wanted to, on Maundy Thursday – 14 April 2022, two weeks after our wedding anniversary. He was on end-of-life care for 10 days, and it was traumatic. But when he died, there was relief. It sounds strange, but neither of us had to go through it anymore. And selfishly, I didn’t have to watch the person I loved most in the world waste away in front of me.
What no one tells you is what happens after. You have all these medical teams supporting you, checking in daily, and then the moment he died, they disappeared. Literally radio silence. No calls, no visits. And then they came to take the equipment – the hospital bed, the hoist, the wheelchair. Part of me wanted it out of the house because I didn’t want those reminders of illness, but when it went, I was left with just a sideboard and a settee. Our big wheelchair-accessible vehicle was taken back. And suddenly I had no car and there was no structure to the day.
Mark’s brother and sister-in-law stayed for a week and helped with the practical stuff – letting people know, organising things. Then I couldn’t bear to be at home, so I hired a car and stayed with my godmother and best friend. For a few weeks, I was busy with funeral plans, which gave a focus. Mark’s funeral was on 21 May, and then I was left in limbo.
I went back to work in July – a new type of work. I became a carer. I felt I’d gained all these skills caring for Mark, and I wanted to give something back. My main client had secondary progressive multiple sclerosis (MS), so I had this understanding of what life was like for people living with chronic conditions.
At the same time, I joined WAY Widowed and Young. Seven weeks to the day after Mark died, I went to my first WAY meet in Exeter. I cried on the drive there because I knew I’d finally be around people who understood. Family and friends had been brilliant, but nobody really got it. At that table, I didn’t have to explain myself. I could feel angry, sad, laugh, cry, and they understood. No one looked at me like I was strange. They just got it.
The Facebook group has been a lifeline too. People don’t just post when things are hard. Sometimes it’s about little wins that feel massive – like the day I planned my meals for the week and shared that. Two years in, that was a big deal. People cheered me on because they knew how significant those moments are.
Since Mark died, I’ve tried to focus my energy on raising awareness and funds for MND. I’m running the Great North Run this year. Mark’s body stopped working – mine still does. I feel it’s appropriate, especially as I’m about to turn the age Mark was when he was diagnosed. The MND Association gave us brilliant support during the illness – practical advice, financial signposting, emotional help. But my connection now is about fundraising, research, trying to help find that cure.
One thing I want people to understand is how traumatic caring for a terminally ill partner is. Nobody prepares you for it. And because it’s your spouse, of course you do it – you just do it. But then it’s over, and you look back and think: that was horrific. I can’t remember the last time Mark held my hand, or kissed me, or hugged me. There’s no chance to grieve those losses along the way – you’re too busy doing. And when it stops, the enormity of it hits. I’ve had a lot of therapy and counselling. Recognising the trauma, asking for help – that’s so important.
Peer support is vital too. MND is relatively rare, so not many people lose a partner to it. But to have people who understand what it’s like to care for someone with a terminal illness, whatever the disease, that’s huge.
If I can help raise awareness about MND, I’ll feel I’ve done something. It’s a diagnosis that healthcare professionals dread because it’s always fatal, and it’s so cruel in how it takes people. I hope sharing our story helps others understand more about the realities of coping with this disease.
What is MND?
MND describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. With MND, messages from the motor neurones gradually stop reaching the muscles. This leads the muscles to weaken, stiffen and waste.
MND can affect how you walk, talk, eat, drink and breathe. Some people also experience changes to their thinking and behaviour. However, MND affects everyone differently.
There is a one in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50.
WAY members offer each other support, friendship and understanding after being widowed at a young age.
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