As a dementia carer, it’s now clear to me that you may find yourself in an impossible situation when your familial duties are considered an inconvenience by some, especially an employer for instance.
This is the tale of a friend of mine, whose mother suffered from Vascular Dementia for more than five years before her death last year. He is still suffering a great sense of loss. But that’s not all…
My friend kept a diary of the great many hours he spent in hospitals and care homes. It was his way of staying sane. I will publish his diary to ensure his anonymity – you’ll find out exactly why as I release it to you, day by day.
I am astonished as to where carers find the strength to carry on day after day, laying their own lives to one side, watching their social group fall away and find themselves forming their best relationships with hospital and care home staff.
Then? My friend would go home to live an isolated life, washing, drying, ironing nighties and dressing gowns and cursing the weather because his tumble dryer had broken and he couldn’t afford a new one.
It is normal for a person who becomes a carer by circumstance - and not choice - to draw enormous sympathy. Or, to be honest, pity. I am certain that some of you will know that as the disease progresses a dementia sufferer will become more dependent on you and if you are working then your increasing carer role will impact on your work.
Whether you are a carer for someone with Alzheimer’s, Vascular and Frontotemporal Dementia - in fact, all types of dementia from the most common to the rarer types – your life will undergo great change.
And not everyone will be willing to accommodate you.
Thereby, gradually his daily work life, made being a dementia carer a disciplinary matter and support and initial understanding gave way to barely concealed slights, innuendo and contrived lies and indirect bullying. There were very serious arguments. But what was he to do?
What could he do? He told me that the perfect scenario would have been to give up work entirely and care for her, but like us all he needed the wage to survive.
During that time, he never received any criticism directly but always by a second party, lest he confronted the injustice of what was being said or raised observations about wanton and callous cruelty. It is all about cruelty when one purports to support individuals in principle but completely fails to do so at a personal level.
Work was not a comfortable place to be. In fact, at times it became a very abusive place. Either he was anticipating a distressed phone call or being undermined and bullied. Quite simply, life was hell. It was clear there would be absolutely no accommodation for being a full-time employee and at the same time a full-time carer.
I have no doubt that he was a full-time carer because the boss was told this by his colleagues. In the early stages of the disease, his whole conscious day was focused on his mother, alone at home. He was highly capable in his daily work - even at the worst of times - but when the inevitable emergencies arose there was a clear deep resentment at the time away from working for the profit of another.
Where siblings should have stepped in, they didn’t. They could see the gradual physical damage that it was causing their brother and did not wish to suffer similarly.
Talking to my friend, what stands out above all the suffering was his intense concern, exhaustion and his love for someone slowly and painfully fading into the shadows. He tells me that Love was the anchor to which his mother clung desperately. As her memory faded because of the dementia, that direct love became everything to her.
Carers simply do not walk away. It is viscerally impossible for them to do so. Instead, they merely collapse but keep going on and on and on. Too frequently in isolation and much too frequently to the detriment of their own health.
The diary pages to which I will link from here speak of the lack of real personal support for a carer. You will also learn that even as Dementia and Alzheimer’s Disease become far more prominent in people’s and community lives, other than make noises of support and concern, governments do very little.
It is as if politicians are passing on that responsibility to future institutions and hoping that the medical, economic and social crisis on the way won’t happen on their watch.
Too late, Folks. The crisis is here and you need to act.
In the meantime, I and my friend had to do most of the caring ourselves. But this is his diary…
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