Alun’s Story: The Joy, Challenge and Unexpected Rewards of Caring
From NHS nurse to full-time Carer
Julie* and Alun, from Walsall, both worked for the NHS and enjoyed family life together with their two sons. But in 2007, their lives took an unexpected turn when Julie experienced serious complications following surgery.
Alun shares how he went from being a Registered General Nurse (RGN) to becoming his wife’s full-time Carer, the challenges their family faced along the way, and why asking for support has made such a difference.
In 2007, Julie had facial surgery to help with sinus and breathing problems. Following the procedure, she developed post-surgical infections which triggered an autoimmune response, Chronic Fatigue Syndrome and a Complex Pain Disorder affecting her whole body.
When our lives changed
These conditions have had a significant impact on Julie’s balance, mobility and co-ordination. Chronic pain and fatigue also cause ‘brain fog’, affecting her concentration and, at times, her ability to process information.
Julie also lives with spinal degeneration and cord impingements, adding further challenges and frustrations to her daily life.
By 2010, her health had deteriorated to the point where she was dismissed from work on ill-health grounds. Suddenly, our family was dependent on just one income.
Trying to balance work, caring and family life
For the next two years, I continued working as an RGN. We had many hospital and clinic appointments all over the Midlands (Birmingham and Coventry) trying to finally get a diagnosis of Julie’s problems.
I worked nights so I could be around during the day to support Julie and look after our two young boys. It took its toll on me as I was struggling with very little sleep, usually spent on the sofa, I felt the weight of change, anxiety and increasing pressure.
Julie’s health continued to deteriorate, and, despite her best efforts, she was finding it increasingly difficult to look after our sons, who were then aged 10 and 8. They were still children themselves, and it was too much to expect them to take responsibility for caring for their mum.
I approached my manager to discuss flexible working options. I asked whether I could change my working pattern, reduce my hours or work term-time only. Unfortunately, we couldn’t find a solution that would enable me to balance my job with the support my family needed.
My decision to resign was made when I woke up and found Julie struggling on the kitchen floor, trying to sort the laundry and I thought, enough is enough.
For the last 14 years, I have been Julie’s full-time Carer.
The financial impact of caring
Losing our only regular income changed everything. Almost overnight, the financial security we had worked hard to build disappeared, and the pressure on our family became overwhelming.
We eventually lost our home and found ourselves moving house four times between private & social providers with all the upheaval that entails.
We were determined the children stayed in the same schools, with the same friends, they had, had, enough to deal with, without any more disruption and change. This decision sometimes meant further to travel on public transport to take them to school, at an age they were too young to travel by themselves.
We were also thrown into an unfamiliar and complicated benefits system, trying to understand what help we were entitled to while already coping with the enormous emotional and practical impact of Julie’s deteriorating health.
Following an Occupational Therapy assessment, we were referred to Walsall’s Housing Adaptations scheme and thankfully moved into a fully adapted property.
It has been a godsend.
Financially, we are now in a much better position, thanks in part to Carer services in Walsall helping us navigate the benefits system and the complexities of DLA, then PIP and, more recently, Universal Credit.
Finding support through Walsall Carers Hub
Carer support in Walsall has been a great benefit to me, first through the Carers Centre and more recently through Walsall Carers Hub.
The Hub has provided advice, practical support and, importantly, camaraderie. I’ve received help with dealing with different organisations and accessing Carer breaks, day trips and support groups.
I’ve also developed friendships with several other male Carers. The banter, friendship and mutual support make an immense difference to my wellbeing and sense of worth.
Attending the quarterly NHS self-care management group also gives me access to useful information, advice and healthcare sessions.
As a Carer, there is always something new to learn.
Planning for the unexpected
More recently, attending Forward Carers meetings prompted me to rethink and update our plans for what would happen if I suddenly became unable to care for Julie.
Our children now live some distance away, which means they cannot always be immediately available. I’ve spoken to friends who are willing to step in temporarily or in an emergency.
I’m also putting a key safe outside our home so trusted people or emergency services can gain access if needed.
I’m arranging for Julie’s medication to be organised and delivered in a way that will make it easier for somebody else to manage if they ever have to step into my caring role.
Having these arrangements in place gives us greater reassurance that Julie will continue to receive the support she needs if something unexpected happens to me.
Caring is much more than hands-on support
Taking on the role of a Carer isn’t simply about providing the physical support my wife needs.
My caring role includes:
- Ordering medication and making sure Julie takes it correctly.
- Keeping supplies, including catheters, up to date.
- Attending hospital and GP appointments.
- Advocating for Julie and helping to voice or clarify her concerns when she is unable to do so herself.
- Shopping, cooking and doing the laundry.
- Managing many of the everyday tasks that keep our home and family life running.
And after all these years, my creases are as straight as anyone’s and I consider myself a fairly accomplished cook!
The caring role is multifaceted and constantly changing. It can be challenging, rewarding and humorous in equal measure.
The joy of caring
I think being a Carer is rewarding in its own right.
My wife and I spend a great deal of time together, and our marriage is a strong one because of it.
Being at home during my boys’ childhood also meant I was able to build a great relationship with both of them. I got to take them to school, shows and events that I might have missed if I’d still been working.
Caring has taught me to enjoy the little things, relax and appreciate the people and things around me instead of always rushing from one thing to the next.
As the saying goes, “Stop and smell the roses” – even if the bloke whose garden you’re standing in tells you to get out!
Alun’s advice to other Carers
My advice to other Carers is simple: don’t be shy or ashamed to ask for support.
No one can know everything, and no one can do it all on their own.
Support from other Carers, from friends and family, and from services such as Walsall Carers Hub can make a real difference – not only to the person you care for, but to your own wellbeing too.
After all:
You don’t know what you don’t know.
Further support
Walsall Carers Hub is based with Midland Mencap’s Disability Hub located in the heart of Walsall town centre. You can find out about our support and how to access your free Carer ID card. If you would like to pre-book an appointment to speak to one of our friendly advisors, for Information and advice, contact info@walsallcarershub.org.uk or call 01922 616 798.
We are open Monday to Friday, 10.00am until 3.00pm and offer a Carer drop-in on Monday and Wednesdays, 10.00 am – 1.00 pm.
*Julie’s name has been changed in line with her wishes.
