If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer? This is not a position that fills you with hope for the future, gives you room for personal development, or brings the benefits of structured team work. Yet thousands of people fulfil this truly unique role; not because it was their dream job and certainly not because of the bonuses and benefits.
Caring for a loved one is a relentless, 24/7 commitment. Unless you have been in the position of having a vulnerable person depending on you for everything, is it difficult to imagine the life-changing role of becoming a carer to someone who, quite often, used to look after you. Yet this is a role that is unpaid, offers very few if any periods of respite or holiday, and makes no provision for sick leave, despite the fact that carers often neglect their own well-being because of their commitment to their loved one, making them much more likely to suffer health problems themselves as a result.
Unpaid caring is the ultimate example of selfless giving, and yet these people are taken for granted, their contribution often goes unrecognised, and many feel abandoned by the health and social care systems at the very time when they need the support of professionals the most.
Our experiences of caring for my father fall into the two most common ways in which family members support an older relative with a long-term condition. For 10 years my father’s dementia went undiagnosed, he lived at home and month by month increasingly struggled to complete simple everyday tasks. As his dementia progressed, he needed his family more and more, and we supported him as much as we could. We tried to get him the help he so desperately needed, generally failing on all counts due to the lack of understanding of dementia, until the ‘crisis point’ that I talk about here. Once that moment had passed, dad’s needs were far too complex for him to have any other option but to go into a care home.
I think many people make the assumption that if your loved one is in a home, you do not actually do any ‘caring’ any more, it is just ‘visiting’. I can assure anyone labouring under this misapprehension that if you are as hands on as we were in the last nine years of dad’s life, it is a full-time job. Granted the caring role alters, but the fundamental facets of it remain, plus you add many more to do with the politics of privately run care homes.
When your loved one is in a care home I think many people believe that all those battles for help and services, that you had when your loved one was living in their own home, magically disappear. Not so. You still have to fight for everything your relative needs, plus constantly helping and advising the care home staff, and monitoring your relative’s health and wellbeing very closely.
The unpredictability of the situation and the frequent need for out-of-hours services does not change either. I remember so vividly those unexpected middle of the night trips to A and E because dad was gravely ill; I would be tired as a rat, sick to my stomach with fear and dreading what may follow. Furthermore, because hospitals are not places where people with dementia generally thrive, you then spend every waking hour with your loved one so that you can feed them, assist with their personal care, educate the staff about them, and make sure they receive treatment that is appropriate to them.
Caring is a role that truly never ends. At every step of the way, from the early years of dad’s struggles at home, through his diagnosis of dementia and the years in care homes, to the very end, I can honestly say that caring for my dad was the one thing in my life that I never escaped from. In the meantime, I found that friends drifted away, relationships failed, my career was kicked into the long grass, and my peer group generally did not understand the devotion I felt and the duty I had.
One recurring theme I have always found talking to family carers is that however much you do, you always feel you could do more. Your maximum effort can still leave you feeling like a failure, and nothing you ever do can change the most fundamental thing that you wish you could alter, namely to take away the dementia, or whatever illness or disease they are battling, and have your loved one back again, as they were.
Given that no civilised society can exist without unpaid, family carers, it is remarkable that our supposedly very modern country undervalues this vital contribution made by the most dedicated and loving citizens that it has. The job description should read that you will be supported, helped and advised 24/7 to assist with providing the outstanding care that only those who truly care can provide. Love can do so much, but it cannot conquer all when it is exhausted, frightened, overwhelmed and alone.
Until next time…