Making Caring Visible - A Carer's Perspective
8th June 2020 marks the beginning of Carers Week and the theme is 'Making Caring Visible'. This is an annual campaign to raise awareness of caring, to highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK. Carers Week can also enlighten others who don't think they are carers or have caring responsibility to realise that they do and access the support that they need.
Many individuals and organisations will be undertaking events (socially distanced of course), activities and sharing of information over the course of Carers Week to highlight just how important carers are to those they care for, the community they live in and the UK as a whole.
I wanted to do my part to make caring more visible but I'm not a carer myself and so felt that I could only really make assumptions about caring and what it is like.However, I have a close friend who is a carer for her mother and she has agreed to answer a few questions about her experiences as a carer which I hope gives life to what a carer experiences and how they might be feeling. Hopefully by reading this, it may make caring more visible to you, it certainly did for me when I read the responses that my friend sent back to my questions.
What Are The Biggest Challenges Of Being A Caregiver?
"This is a massive question and one better covered by an entire doctoral thesis. Where to start? On the death of my father I took over the care of my mother who has Motor Neurone Disease (MND), and has been quadriplegic for over 15 years. Looking after all her needs was never an issue for me, it was the surrounding kaleidoscopic picture that has proved, and continues to prove, so hard to contend with.
Social disengagement coupled with significant financial strain are two of the most demoralising aspects of caring for a loved one. Until it fell to me to be a care giver I had no concept that I would become so alienated or financially disadvantaged as I am today. These core elements contribute greatly to the emotional and physical stress that I have encountered, and there are no easy solutions to the problems confronted. Endless tribulations in the social care sector present as a minefield as opposed a help; and with poor resources, training, and low care standards in the community, securing a comprehensive care package is fraught with problems leaving you struggling through no matter what.
Making provision for my-self, developing a meaningful self-care strategy, promoting existing relationships, meeting new people, acquiring skills for the future leads to Catch 22 dilemmas where the demands of the care setting and the attributed economics cancel out much of what others take for granted, or suggest I should do to maintain my health and well-being. The vagaries of care leaves a mark on your mental and physical health, and the complex practical and financial issues become exhausting. This means that despite love and best efforts caring takes its toll on the carer and cared for alike and feelings of guilt, frustration, even despair, can periodically preside.
My job is 24/7 and in the main, as a carer, I am almost invisible to society - and my prospects for the future are diminished because I care."
What do you enjoy about being a carer?
"I am fortunate in that the person I care for is not only my mother but best friend. It is fulfilling providing a gold level of care to the person who has given me the most in life, and I am proud of the standard of care I provide. Through the care extended I am essentially saying thank you for all the love, guidance, support, and happiness my parent has given me throughout my life.
Being core to my mother’s life in a manner never anticipated has taught me so much more about resilience, humility, courage, determination, and the sanctity of life. Through nursing her I have come to see the world differently and benefitted from her wisdom, counsel, and unconditional love. She has given me the gift of a greater appreciation of life, where even the smallest things attract a more profound meaning. Together we have become great mental travellers, found ways of entertainingly ourselves, have favourite ‘moments’, and share looks and smiles that only we understand."
What does a typical day look for you?
"Whatever has happened during the night, no matter how poorly I may feel, the aches and pains I have, every day is a nursing day. The first 5 hours are a concentrated period of managing and performing all cares which also include additions such as body movement, physio therapy, catheter care and nebulisers, and many infection control tasks. I get to sit down when I feed my mother and we watch a documentary or drama, which stimulates us. Then there are the host of general house hold jobs to be done, it’s a bit like painting the Forth Bridge. These days I’ve relaxed the schedule enough to build in some ‘me’ time. This generally takes the form of a nap or reading something before more care tasks that lead into early evening care, dinner, and night care. At core life is consumed with securing a proactive programme of care, not to mention bids to address the emotional, intellectual, and spiritual requirements of my mother.
Following a late night care routine we perform a sweet little “good night” ritual before I fall into bed and hope that we both have a good night. If very unwell, that night will be marked by 2hrly observations and attending various demands before starting the new days care all over again. The monotony of the routine is offset by discipline, structure, and a desire to produce the best outcomes possible. Whilst others complete eight hour shifts, have breaks, and go home at the end of the day a full-time carer continues long after, and often nearly 365 days of the year."
How do you think carers could be made more visible?
"In the UK today 6.5 million people are unpaid carers to family members or friends, and even with grants, that care in-put saves the Government untold sums. It is only through political means with the potential to improve funding in the sector that the plight of many carers will improve. There is also a pressing need for more support to be given to carers after their loved ones have died, enabling them to get back into employment. An emphasis on improved training, salaries, and working conditions would do much to alleviate staff retention levels and improve the nature of services provided in the community so that unpaid carers can trust, rest, and pursue a healthier life style. Whilst different forums have done much to highlight the difficulties faced by carers today and lobby politicians, it is down to Government and local councils to give some priority to this hidden army."
