Beyond Being A Carer

‘I guess, like most people, I never expected that one day I would find myself being a 24/7 carer. When it happened, there was no warning. It was the proverbial bolt out of the blue. Of course, when I look back something was clearly going wrong but I could not put my finger on it then or make any sense of it. My journey into dementia and dementia care has presented me with some important insights [call them lessons, if you wish] but also some unexpected and unwelcome truths. It is now nine years on and I’d like to share something of my odyssey.

On the critical day that the doctor explained the diagnosis and the prognosis of my wife’s dementia to me, my mind spun into overdrive. A new, unknown world, in a totally unfamiliar landscape, was stretching out before me. It didn’t frighten me exactly but it left me pretty apprehensive. Something of what transpired in the years after that conversation, is the basis of what follows.

At first, I was bathed in sympathy and that helped because I was floundering and needed to talk, talk, talk about what was happening. The “D” word today seems to me like the “C” word was some decades ago, dark, impenetrable and very “avoidable”. Commiseration came most often with the same, repeated sentence, “If there is anything I can do, please let me know”. Little did I realize that what it amounted to in the majority of cases was the kiss of death. I received no support and discovered that it made me feel that I was now burdened with having to ask for help all the time and that became unacceptable. That was my first “lesson” – don’t put your trust in others too easily. Further, in those early chats that I had, one question kept cropping up, “How are you coping?” The more I heard this, the more I could find no answer to it. The concept of “coping” made no sense to me at all – yet. My second discovery, as I felt my way forward? The knowledge of what coping really means only comes through practice and experience and until then it means very little.

My next insight was a feeling that took over after the first nine months or so of caring. Inexplicably, I saw how my life had been changed by it such that I was actually living cocooned in each day. No other time frame existed for me. This shocked me at first but now I see it as my survival mechanism that kicked in subconsciously and took over by some almost magical osmosis!

From that fateful beginning, I was soon hogtied by the ever-present care agencies. I believed that bodies like the Social Services, MIND and the NHS were there to make life easier, simpler. Initially it was very comforting but as matters started to become more complicated, they all departed the scene as speedily as they had arrived on it. The more I subsequently sought them, the less willing they seemed to be there for me. I began to feel that I didn’t matter in this equation. That was lesson number four – if you are given a rotten deal, challenge those organizations, even fight them if you have to, for what you believe is your entitlement and for the record? … I did have a fight. It lasted for three unnecessarily long years and found closure only after the intervention of a local MP … but why should we have to go to these lengths and feel these dreadful put-downs?

Lesson five was, perhaps, my biggest surprise. In the coping world of the carer, the withdrawal of those you need most showed me how alone I was beginning to feel and this loss was not restricted to those who where there [ostensibly] to help. I also found myself isolated via a long and subtle retreat into the woodwork of those I thought were my friends, neighbours, ex-colleagues and even relatives. How could the “D” word invoke so much loss? Its persistence for me was like a form of Chinese water torture.

My last insight was happily more upbeat. 24/7 caring for a loved one can be one of the loneliest jobs of all and it stretches far beyond any physical “aloneness”. It permeates the psychological, the social and the emotional sides of our being and few people appear to associate any of them with us or with dementia care. As carers, it is vital that we create unique spaces in our lives, solely for our retreats – and as often as possible. Moreover, it’s so helpful to seek out other carers, too. From them comes the pure empathy that we need so much in our search for some kind of therapy “highway” for ourselves. Any route to a level of mutual support is essential to our, as well as our loved one’s, survival.’