Alan and I met on a blind date on June 14, 2006. He was handsome, humble, intelligent, and behaved like a gentleman.
Both divorced with no children, we knew within a few dates we were soulmates.
We married exactly eight years after our first date, and our relationship was perfect in every way as we shared a love of golf, skiing and hiking, and had similar values.
While on holiday in September 2017, Alan mentioned his right arm had been feeling weak for a month or two.
Neither of us thought it was anything to worry about, but on returning to the UK, he went to see a doctor.
After a further meeting with a neurologist and various tests – including an MRI to give a detailed picture of his brain and spinal cord, and electromyography (EMG), which measures the electrical activity in muscles, we were told Alan had motor neurone disease (MND).
MND is a progressive, degenerative neurological disease for which there is no cure.
We were told Alan had between six months and two years to live
It attacks the motor neurones, which are nerves that control movement. This means the muscles eventually stop working leaving those with the disease unable to move, swallow, speak and eventually breathe. It can affect anyone of any age or sex.
We were told Alan had between six months and two years to live.
We were both stunned, in tears because it was so unexpected. Alan kept saying ‘this isn’t fair on you’ because he was aware I was going to have to look after him as the disease progressed and would be left as a young widow.
We were only in our early sixties. We had been together 11 years and had expected to grow old together.
But we needed to get organised on a practical front – and we knew we had to make the most of what time we had left even though the sadness of the diagnosis was overwhelming.
We pressed on with holiday plans we had already booked, sorted out wills and put in place a lasting power of attorney.
We then made changes to the house so that Alan could live downstairs, turning the dining room into a bedroom, building a wet room in our garage and fitting ramps to accommodate a wheelchair coming in and out of the house.
Alan’s health deteriorated quickly, and within six months he’d lost most of the use of his arms and legs, needed a non-invasive ventilator to help him breathe and was using a wheelchair.
Initially I continued to work full time, but finally resigned from my job because I could not cope. I was also the principal carer for my mum who lived at home, alone, with vascular dementia.
During 2018, we had an amazing but sometimes challenging fortnight in Vietnam and holidays in Wales, Whitby, and Scotland – we were determined to make as many memories as possible with each other.
But by the end of the year, he had a tube in his tummy to aid feeding and was dependent on both me and care professionals 24 hours a day for his every need. We moved him from his bed to his chair, washed, dressed, and fed him; even doing simple things like changing the TV channels or scratching an itch.
We were connected with Marie Curie West Midlands Hospice in Solihull by the specialist MND team at Queen Elizabeth Hospital and the majority of Alan’s specialist care was provided by both of them.
Marie Curie was a godsend. From the outset, the charity provided us with an occupational therapist and physiotherapist to help source the equipment we needed to keep Alan at home for as long as possible.
Our home became a hospital with hoists, a hospital bed, ventilator machine, cough assist machine, medicines and a special shower chair. At this stage Alan could still communicate – but we lost our privacy because our huge support team were coming to see us at home everyday.
As best we could we kept up a social life, but progressively that involved people coming to visit us rather than us going out.
From the outset of Alan’s diagnosis, I started keeping a journal.
Last thing at night I wrote down the events of the day and my thoughts, which helped me to offload. I also kept a notebook containing details of phone calls and meetings with every health and social care professional.
Alan and I had always been incredibly open with each other, but as the disease progressed, communication became harder – and I withdrew. I was now Alan’s carer rather than his wife and began to feel increasingly alone.
Marie Curie stepped in yet again and its bereavement team said I was suffering with anticipatory grief, something I’d never heard of before. It helped me make sense of my constant feelings of sadness, anxiety and pending doom.
When Alan became seriously ill with pneumonia in December 2018, it was very scary.
After some time in hospital and a hospice, where for a lot of time we both thought he might die, he came home in February.
Our life became home-based where we received visitors, watched box sets, held hands, and talked a lot.
In April, Alan had a second dose of pneumonia and was admitted to Warwick Hospital. When he was over the worst, I asked if he could be moved to the Marie Curie Hospice in Solihull.
Alan entered the Marie Curie Hospice, 15 months after his original diagnosis. This time it was about making the end of his life as beautiful and comfortable as possible.
Alan was happy at the hospice. Friends and family visited and I was able to return to being a wife, instead of performing care duties.
He lost his voice a few weeks before he died, but the looks he gave me told me he loved me and didn’t want to leave me.
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On June 5, 2019, nearly 13 years since we first met, he suddenly looked at me differently. Nurses helped me get into his bed so I could hold him as he took his final breath. He was only 64.
Two weeks later, on June 21, we held his funeral – it was also his birthday. Turning it into a happy occasion, everyone wore colours, we had cake and sang happy birthday.
When I said goodbye to Alan for the last time, I kissed him and put an anniversary card into his coffin.
It was Alan’s occupational therapist who first suggested I write a book and Alan agreed. He wanted me to tell the world what it was really like for us.
So, after the funeral, I drove to Devon and locked myself away in a cottage with my yoga mat, laptop, and the journals of notes I’d made during Alan’s illness.
It was emotionally very difficult writing the book, which is partly why it took nearly three years. My book, Life’s Good – It’s the Disease that’s the Problem, was released on Alan’s 69th birthday in 2023.
I hope it helps people understand what it’s like caring for a loved one with a terminal disease, providing tips for carers and healthcare workers – and demonstrates the importance of carers taking care of themselves, too.
Four years after Alan’s passing, I’ve found a new purpose.
I’m a public speaker, raising awareness of Marie Curie, the importance of hospice care and about MND. I’ve tried to turn my grief and widowhood from a negative situation into a positive one.
My love for Alan is as strong today as it’s always been, but some days I miss him so much it hurts. I believe he would be amazed and proud of the book I have written and that book sales will raise £20,000 for the charities that supported us.
Hazel’s book, Life’s Good, It’s the Disease that’s the Problem can be ordered at: lifesgoodbook.co.uk. All proceeds are being split between Marie Curie, MND Association and Myton Hospice.
Founded in 1948, this year Marie Curie is celebrating its 75th anniversary. Over the last 75 years Marie Curie has been there for millions of people affected by terminal illness and those dealing with dying, death, and bereavement.
For more information and to help the charity provide another 75 years of expert end of life care, head to Mariecurie.org.uk/donate.
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