I had only been working in London three days when I first met Neal. He was 6’4”, the size and stature of a rugby player, cheeky smile and being our print supplier, had brought our design team bottles of wine for Christmas. He would often take us out for lunch and I got to know him really well.
A while later he asked me out. We were having a great time, we were away for weekends and he was very popular and had loads of friends.
But only six weeks into us going out he fell ill and was diagnosed with a malignant brain tumour. It was a shock to us all as he’d been so fit and well.
An operation and six months of chemotherapy and radiotherapy later he was given the all clear. We celebrated more in relief than in cracking open the champagne. It meant we could resume with our lives and later that year Neal asked me to marry him. As we looked forward to getting married, he noticed side effects he’d had previously from the tumour and brought his MRI scan forward. Sadly his hunch was right, the tumour had returned but this time it was inoperable. He told me I didn’t have to marry him but I loved him and told him we would make the most of the time we had left together.
“I refused to let illness dictate our lives.”
Later that year we were married and saw the day as a celebration of our lives together, however long we had. I also noticed how our love deepened as we dealt with the illness together.
Five more years of chemotherapy resumed for Neal and we were at Charing Cross hospital every Tuesday for years. Neal then had a stroke and was left severely disabled, unable to speak and with a feeding tube. My beautiful big strong husband was reduced to not much more than a body in a hospital bed in our living room. I had given up my job to care for him 24/7.
Caring for Neal is probably the hardest thing I’ll ever do. Not only did I have to deal emotionally with not knowing how long the love of my life had left, it was physically demanding. I had a monitor on each night due to his choking fits and ensured he was washed, dressed and hoisted into his wheelchair every day with the help of some wonderful professional carers.
“I made myself responsible for my husband’s life.”
But the years of caring took their toll on my own health, both emotionally and physically. At times I felt isolated, behind closed doors, just existing for another. Most friends and family didn’t really understand what I was going through. Although Neal was the one with brain cancer, I still woke up to the illness every single day for 13 years. It may not have been in my head but it still affected every part of my life.
I finally became physically unwell and unable to care for him any more and Neal had to go into a nursing home whilst I recovered.
During this time, I realised I had been there for Neal and others but had not really been there for myself. I was great at people pleasing! Ensuring everyone else was OK but it was almost like I wore a mask – pretending I was fine because I didn’t want others to see I couldn’t cope.
“After all, it was Neal who was unwell, not me!”
After finding clarity and catching up on my sleep on a silent retreat, I realised I hadn’t been there for me. I needed to be kind to myself, be more honest with others and ask for more help. A few weeks later I resumed with looking after Neal at home but this time I was also caring for myself.
“My insight and knowledge started to help other carers.”
Other carers came to me and I offered my help and knowledge which also helped them. For some, this insight significantly improved their lives and I realised I could help others ensure their health and wellbeing whilst they still cared for a loved one.
On the 6th September 2015, Neal sadly passed away, four days shy of his 56th birthday. He is not suffering anymore and I know I gave him my best and my love.
So many of us will become carers at some point in our lives and I am here to offer my insight and support to help them not only to remain healthy but to enjoy life.
“If you are caring for a loved one it is time to start caring for yourself.”