Reflections of a carer

So here I am at 5 am, a regular time for me these days to be awake, contemplating the mountain of priorities I have ahead of me for the day. In the many conversations I’ve had with colleagues, members of the public, policy makers, researchers , practitioners and academics in my role as Director of a national research centre, I’ve come to realise how important it is to share our collective stories about our lives to learn from and empower others. So here is mine. I do hope it’s not a ramble!  Its purpose is to raise awareness of the importance of living in a compassionate world where we treat each other with due consideration, care and kindness.

In a world that is consumed with a preoccupation for either celebrity or performance management, there often seems little room for compassion for others. Society is quick to judge what it doesn’t understand if it can’t be boxed, measured and contained. IMPACT doesn’t count if it’s not a number.  Career politicians lack the insight into the grass roots experiences of their community constituents.  Yet for those people in society trying to balance the reality of multiple identities ( worker, mother/father, carer etc), the reality of trying to balance complex and often competing roles can be a struggle.  On the surface we may appear calm, controlled, driven, but underneath we may be peddling furiously to stay afloat. In reality many businesses, companies and organisations miss these important human signs, especially if they have a policy that covers it off and a box can be ticked that says ” yes we support people in caring roles”.

So what about me?

I am 51 years of age, leading a really important national centre for applied research that I’m really passionate about as it focuses on making a difference to the lives and experiences of practitioners and the public receiving care and treatment across health and social care sectors. I have had the privilege of working in many countries over the years as a nurse, and practitioner researcher and my innovative and entrepreneurial spirit drives me to make a difference in life with and for others.

I became a carer four years ago when my mother, now 77, was diagnosed with mixed dementia. She has been living independently but as time has gone she has needed more support at home. For four years I’ve managed her care long distance from my home in Kent travelling 250 miles to see her every month and calling her every day without fail.  This has required complex planning with a wide range of health and social care support services and I often wonder how the public copes with navigating a system that puts up barriers that disempower rather than enable families and carers to cope.

A couple of weeks ago mum came to live in my home having decided that she wanted to be with me and my brother. She made the decision over a year ago when my brother was left fully paralysed after a back operation left him with an infected spinal abscess which compressed his spinal cord.

Last July I was stationed in Aberdeen at his bedside in intensive care for 8 weeks waiting for him to pull through.  I took over managing his affairs and whilst running my office out of his home, had to set about selling his home, car, move his possessions into storage, manage his financial affairs and coordinate his long term care. It’s been a tumultuous 12 months but he pulled through and I managed to get him repatriated to the  NHS in England ( he has no wife or dependents) and he’s been in the care of the amazing team at Stoke Mandeville National Spinal Injuries Unit ever since. So I’ve been haring up and down the glorious M25 motorway for the past 7 months but it beats flying to Aberdeen to see him. As his power of attorney I have continued to support him with decisions and participate in his care, treatment and goal planning and we speak everyday without fail. I am so very proud of him. Soon he will be moving to a step down rehab service near to me and my mum and once fully discharged will be able to see us regularly under his own steam. I’ve been managing a complex investigation into what happened clinically and why it happened in the background.

Two weeks ago I took three days off work to manage two mammoth house moves for my mum and myself in a hectic work schedule. I’ve done it many times over but this time it’s different as I’m grieving the loss of my mother’s life in a way. I’ve put my heart and soul into finding a new home for her that will ignite her interests in all the things she loves and am renovating part of my home to ensure she is safe, comfortable and it’s a home from home for her. In doing all of this I sold my forever home in order to support her.  Typically the builders haven’t finished yet ! In the midst of all this my remaining sibling who lives on the other side of the world and visits once a year for a week, hasn’t rung to ask how any of us are doing. I find that the hardest thing to cope with out of everything else.

So what’s the point of sharing all this with you?

It’s so important that we look out for others in our local communities and be attuned to giving something back to people who may be lonely or alone . Remember you can be in a room of family and friends and still be alone.  You don’t have to give to receive but give because you genuinely want to help others.  It’s important to stop judging each other and be attuned to the stigma and labels we consciously or subconsciously give to people and how this creates biased behaviours. I notice this a lot in my life when out with my mum and brother.  People stare or give you a wide berth, pity you or simply don’t care or cater for your needs. We’re determined for example to name and shame every business in our home county that has poor facilities for disabled people in a new Facebook campaign coming soon!

Over the past year I’ve learned a lot about my own inner resilience but also about others both in my family and in my local community and workplace. Workplace support is so crucial but often absent, family support is vital but often lacking, community support is essential but often cuts in council spending have wiped out any hope of access. Looking out for other carers and understanding the importance of having access to support networks is essential. More and more young people are finding themselves in carer roles as cuts to funding affect support for loved ones living with physical or psychological challenges.

So what are the three take away messages I want to share with you?

1. Be genuinely attuned to the responsibilities that your friends and work colleagues hold in their lives and treat them with dignity, respect and compassion.

2. Ensure that workplaces genuinely offer flexible and adaptable working policies that cater for individual needs with good access to support services when needed.

3. Be authentic in your actions and look for opportunities to give something back to help others in need, it may only be a cup of coffee and a listening ear that’s required.

Finally as I am finishing this my mother in law has been taken very unwell so a fresh set of circumstances and challenges are layering themselves on top of my already complex life. Still I’m up in 15 minutes to ready myself for a full work schedule today hoping that my Duracell batteries can propel my inner innovation steam room for another day.

My thoughts go to all my fellow carers out there and I am mindful that there are many dealing with equally complex issues often more isolated than myself. So look around you today wherever you are and reflect on how you might help support others, if only for a few minutes.

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