Young carer…… did anyone know?

My first ‘caring’ task as a student nurse was helping a man to put on his slippers. Doesn’t seem like a big deal…. but for me, overcoming the embarrassment of putting slippers onto a stranger’s feet was a significant moment. Although I soon developed the skill to bed bath, give injections and carry out all manner of caring tasks, that first encounter remains a key memory. No matter how small the act of caring, it makes a difference. But not just to the person in need of help, it makes a difference to the person who cares too.

When I look back into my childhood, I seemed to assume a role as carer very early in my life. The role wasn’t assigned to me, I just took it! Strangely enough, no one seemed to realize I had taken on this responsibility. I remember watching my two elder sisters either playing or fighting together. Everyone seemed oblivious to me looking when my elder sister got into trouble – she took the punishment  – I silently wished it would stop!

Kate, our daughter was born in 1992. I was a mature mum and had been a ward sister for many years. It meant financial sense for me to carry on working full time and for Kevin to take on most of the child care responsibilities. Although he wasn’t a well man, he did enjoy his new role and the strong bond between Kate and her dad was evident. Did I miss out on the joys of Kate’s childhood? I tried very hard to juggle my responsibilities and rarely missed the school plays or sports day. I always tried to emulate Mary Poppins and be what I perceived to be a perfect mum. Ms Poppins, however, just didn’t seem as tired and rushed as me and consequently I never reached the imaginary goal! But I tried to do my best, providing for my family whilst still securing as normal a childhood for Kate as I could, free from the worry of having a poorly dad.

Interestingly, best laid plans don’t always come to fruition. Prior to being diagnosed with MS, Kevin used to have collapsing episodes and would need me to care for him until the feeling came back to his limbs. One day Kevin came into the house and looked particularly poorly. His skin was cold and clammy and he collapsed as he walked through the door. We had become accustomed to these episodes and the doctors hadn’t been able to identify a cause. I put Kevin to bed to allow him to recover. Kate was about 3 years old. She spent the next few hours on the bottom of his bed, playing quietly with her toys. A few years later, I asked Kate why she had stayed with her dad, playing happily with her toys. ‘I thought he was dying and didn’t want to leave him’, was the simple response. Without me realizing, at the age of 3, Kate had adopted the role of carer for her dad. She felt responsible for him and still does!

 

 

 

 

A long and winding road – Arriving at a diagnosis!

‘I don’t know the reason for your pain. This is the body you were born with. Going from one consultant to another won’t alter the outcome. You need to accept your lot in life’. 

It was 1990, Kevin and I left the Consultants office. We were both dejected and at a loss. It felt so hopeless. I felt reprimanded!

I had watched Kevin suffer for years. His many symptoms and conditions were unrelenting: pain from fibromyalgia, asthma, collapsing episodes, kidney stones, hiatus hernia, deteriorating eye sight. As a nurse, I believed in relieving suffering. I struggled to understand why Kevin couldn’t be helped. With hind sight, many of the symptoms were sign posting to multiple sclerosis.

To be fair, Kevin’s medical notes are testimony to the many tests he underwent over the years. Unfortunately, no one joined the dots! Its extremely frustrating to battle against a system where a person is divided into specialties.

Kevin’s eyesight suddenly deteriorated in the mid 1990’s and he developed night blindness. Our lives were about to change dramatically. Kevin had relied on driving a car. His taxi driving licence was stopped and his independence was severely affected. It was difficult to remain optimistic.

The eye specialist carefully examined Kevin’s eyes. We already knew about the retinal damage from too much oxygen therapy at birth, but a new condition was discovered, Retinitis Pigmentosa. It transpired that this was a hereditary disease and typically caused night blindness. The consultant also expressed concerns about pale optic nerves and recommended a referral to a neurologist.

The visit to the neurologist resulted in an MRI scan of Kevin’s brain. Looking back, I have no idea why the doctors didn’t mention their suspicions. It was to be a further 10 years and the carrying out of a repeat MRI and a lumbar puncture before MS was finally diagnosed. Kevin had attended the clinic that day with our daughter, Katie. She was 10 yrs old. I was on duty as a nurse. Hospital visits were so frequent that I didn’t attend them all. The news hit Kevin like a brick. He couldn’t think of any questions to ask. The few people Kevin knew who had MS were in wheel chairs….. No, he had no questions…..

Invitation to my journey!

A healthy body had always eluded Kevin. Born in 1951, premature and fighting for life, his mum had been told to take him home and nurse him…he wouldn’t survive childhood!

I met Kevin in 1974. Despite a poor start in life and a failure to thrive, he had defied all medical predictions and was able to lead a relatively independent life. Asthma, poor eye sight and unpredictable collapsing episodes were the order of the day.

We married in 1978 and our family was completed in 1992 following the birth of our daughter Katie.

Kevin was diagnosed with Multiple Sclerosis in 2004…..

I’d like to invite you on a journey of a wife and carer of a husband with a debilitating, progressive illness. Guest blogs from Katie’s perspective will be included ……. You’re welcome to join me as I reflect on the past and look to the future.