An inspirational true story about love and living well with a terminal disease by Hazel Carter – May 2023
My husband, Alan, was diagnosed with ALS form of motor neurone disease (MND) in November 2017. He was 62 and his only symptom was a weak right arm.
Our first step, once the shock had subsided, was a phone call to the MND ‘Connect’ helpline. In addition to the copious information they provided, they referred us to a specialist MND nurse (who was based at Q E Elizabeth Birmingham) plus professionals such as an occupational therapist (OT) and physiotherapist based at Marie Curie Hospice, Solihull.
It was all a bit overwhelming in the beginning but eventually, with help from these key people, we got ourselves organised.
We were also encouraged to attend our local MND Support Group meetings. It was useful meeting other families with the same circumstances as us. We gained practical advice and felt less alone.
Devastated by the diagnosis but not defeated, Alan gave up work and we set about living every moment with as much joy as possible. We dug deep and found strength. There were times when it was very tough, and I often cried through the night once Alan was asleep. But we adopted a positive mindset and that helped us enormously. It was hard being both Alan’s wife and his carer but in some ways it brought us even closer together as we made special memories that have sustained me since.
Unfortunately, Alan’s condition deteriorated quickly. Both his arms stopped working within months. Within six months his legs were too weak for him to walk and he had started using a ventilator to aid his breathing.
After a fall in the house in May 2018, while I was out, Alan needed stiches for a serious wound to his head. From that moment I gave up work and made sure he was never left alone again. By this time I was having to handle all his personal care and we were adapting our house to create a bedroom and wet room downstairs.
Alan progressed quickly from a manual wheelchair to an electric one. This involved us buying a wheelchair adapted vehicle to prevent him becoming housebound.
In preparation for the day when his swallow might fail, Alan had a PEG fitted into his stomach in July 2018. A dietician was assigned to us and specialist feeds were organised, just in case.
In preparation for the day his voice might stop working, Alan banked his voice and the team from Access to Technology set us up with an eyegaze device.
During 2018 we managed a two week holiday in Vietnam, went to Wales twice, made a trip to Scotland and enjoyed a week in a fully adapted home in Whitby.
By the end of 2018 our home had become a hospital and Alan was receiving help from two carers from an agency four times a day (five hours of care). However he was now fully paralysed and dependent on a ventilator all day and night. He needed twenty four hour care so I filled in the gaps, or I organised friends and family to help him with his every need.
Unfortunately, in December 2018 Alan developed pneumonia and was admitted to Coventry University Hospital. Once he was out of danger Alan moved to Myton hospice for symptom control.
Alan returned home in February 2018. A palliative nurse became the next member of our team, and a cough assist machine and suction machine was added to the long list of specialist equipment at our home. Specialist drugs to reduce issues with secretions, and drugs to reduce anxiety, began to be administered via a syringe driver. Alan’s swallow no longer worked.
In the spring of 2019 once again Alan developed pneumonia. This time, after a week in hospital, he went to Marie Curie hospice but never returned home. His voice stopped working in May. He died on 5th June just a few weeks before his 65th birthday.
All the time I was caring for Alan, I was also the primary carer for my mum who had vascular dementia. I went into anticipatory grief while Alan was ill. At that time, we both accessed counselling from Marie Curie bereavement team and we also had support from a psychologist. Without this help I cannot imagine how I would have coped.
During Alan’s illness several people suggested I consider writing a book having read my factbook posts. Alan liked the idea. “I want people to know what’s it’s like for you and me” he confirmed when I raised the matter. “Life’s good, it’s the disease that’s the problem” was something Alan often said to me. It felt like the right title for the book.
Every day of Alan’s illness I kept notes. After he died, covid arrived so I had time, and a considerable amount of material to draw upon, to create the book. Initially the book was 177,000 words long. It’s taken 3.5 years to refine it to 139,000 works (around 350 pages).
Dame Professor Pamela Shaw (who is very involved in MND research) wrote in her foreword the book is, “really informative, as well as heart-rending” and “very moving and powerful”. You can read her foreword here https://lifesgoodbook.co.uk/foreword-professor-shaw
“Life’s Good” book describes the hurdles and challenges Alan and I overcame while trying to live life to the maximum while he had MND. In addition, it tells readers how we kept our spirits up, when the going got tough and provides numerous useful tips for carers.
There are several aims for the book-
-educate the general public, those in the medical and caring professions and politicians and decision makers, about daily life with a degenerative disease
-raise funds for the three charities that supported us
-inspire families living with terminal diseases to make the most of their time.
-shine a light on all those invisible heroes – family members and friends, who selflessly give of themselves every day, caring for a loved one they cannot save
Family carers are taking on a tremendous burden at a time when they are going through one of the most emotionally challenging times in their lives.
In a lot of cases they are still working and, or managing other family responsibilities. Reform of adult social care is urgently needed.
Psychological support should be automatic, from day of diagnosis, for both the carer and the person with the disease, in my view.
My book can be purchase from https://lifesgoodbook.co.uk – 100% of proceeds is going to MND Association, Marie Curie and the Myton Hospices.
The same site can also be used to book me to give a talk about any aspect of my experience.
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About Hazel Carter
Until she retired early in 2018 to care for her husband, Hazel had a successful career in the Financial Services industry, working at senior management and director level.
Hazel lives in Solihull. As a public speaker and campaigner, she gives talks to raise awareness of the impact MND has on people with the disease, and on the family members and friends who deliver physical care and emotional support twenty-four hours a day, seven days a week, behind the closed doors of their homes. She also volunteers at Marie Curie Hospice and raises funds for MND Association, Marie Curie, and the Myton Hospices
Hazel’s story has been featured on BBC Radio and in Woman’s Own magazine. Earlier this year Hazel won the Inspirational Author 2023 Award from Ladies First, a Warwickshire based professional development network
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