THE BLOG

Who Becomes a Caregiver?

29/05/2015 10:25 | Updated 27 May 2016

It was little things that first alerted me to my mother's change in health. Nothing earth-shattering, but the appearance of strange behaviour that was out of character. Some incidents could easily be justified by a logical explanation but others were duly alarming. Her memory was beginning to fail, yet she always managed to gracefully cover up any faux pas or forgetfulness with her sense of humour and the abundant amusing stories she told. Put all these oddities together and the picture did not bode well. I knew something was seriously wrong.

My mother had always been so capable, working hard her entire life, bringing up a family and taking care of the home. She had a listening ear, and offered good sound advice. We were five children and unfortunately three of us were born with Gaucher disease (a rare genetic disorder). Over 45 years ago, when two of my brothers and myself were diagnosed with Gaucher disease, it didn't take long to find out there was a lack of information, no specialist to turn to, no treatment available at the time, and no support for patients or their families in any form. I can't imagine the torment my mother must have silently borne, understanding she had unknowingly passed on this faulty gene to three of her children. My mother never let us dwell on our ill health or succumb to self-pity. We were never allowed to think of ourselves as disabled but followed her example of grabbing life with both hands, making the most of it, and remaining positive no matter what.

Therefore how strange it was to suddenly realise this strong resilient woman who had been a large influence in my life, now couldn't take care of herself, let alone anyone else. The tables had turned and it was time for me to look after her. I don't think until that moment I had ever given this scenario much thought. Not many of us do, for it's something almost incomprehensible that parents one day are going to need looking after, they may not always be there for us, to turn to in times of need, or welcome us with comforting open arms.

My mother was diagnosed with vascular dementia and I was suddenly cast into the role of caregiver. The deterioration was far more advanced than I had first imagined and I witnessed this cruel disease as it left destruction in its wake. Having cared for my mother in her last years, I fully understand how hard the task of carer can be. There is no let up, it's a 24/7 position, no wages, lousy conditions, and no gold watch at the end or a pat on the back for a job well done. Who in their right mind then becomes a caregiver?

I think the answer is, most of us. At some point, we find ourselves wanting to step up to the mark, and taking care of a loved one is a natural reaction, doing the best we can to ensure their last years are as comfortable and safe as possible. Without hesitation most dive in without a second thought for their our own welfare. Whilst I began taking care of my mother, my own health deteriorated and as if living with a rare disease was not enough, I was diagnosed at the young age of 44 with Young Onset Parkinson's. I kept this earth shattering news from my mother, for I couldn't bear to burden her at this stage of her life with such a blow. So the very person, who under normal circumstances would have been one of the first to know, was kept in the dark as the unsavoury thought of me needing to be cared for in the future, loomed ahead of me.

Here I am, in my eighth year of living with Parkinson's, and no longer a caregiver. I am on the receiving end, for my husband now takes care of me. What a cruel turn of fate, but this is life. A never ending cycle, of caring and being cared for. As a friend said to me the other day; "it is what it is"!
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