Carers – where lockdown is the norm

Sir, – At the beginning of the second week of Ireland’s lockdown for Covid-19, I experienced a strong sense of déjà vu. There had never been a lockdown of this nature in my lifetime. But then I realised that I had indeed lived in lockdown before, for almost six years, when I was a sole family carer for my late mother who had stroke and dementia.

Our lives changed overnight when my mother became suddenly and critically ill. After 12 weeks of hospitalisation, during which time she had a stroke, she returned to my full-time care. That was the end of life as we knew it. We were confined to our home, together, and we left it only to attend necessary medical appointments.

My mother could not be left unsupervised for even very short periods of time so we did our grocery shopping online and I lost all face-to-face contact with my friends as I could not leave the house.

Days merged into weeks, weeks into months, and months into years.

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As my mother’s condition deteriorated and she developed dementia in 2004, our lives became unimaginably difficult. We did not sleep in a bed for a single night between 2004 and 2007 when my mother finally was admitted to long-term nursing home care. My mother paced the house all night, confused and disorientated, and I walked with her. The total and relentless exhaustion was indescribable. The heartbreak was devastating. The isolation and loneliness left me feeling totally alone in the world, abandoned and afraid of what the future would bring.

My mother carried a Mother’s Day card, which I had given to her many years before her illness, in her handbag. Every day she asked me what it was and who it was from. Every day I explained to her that it was from her daughter, me. But she no longer recognised me as her daughter. She always asked me to read it to her. And hearing the message of love that I had written in that card brought her such joy. It was the only thing that brought her any kind of joy as she lived in a world where so little made sense anymore and where she recognised nobody. I stood before her, her adult daughter, reading a card that I had written to her, but she did not know who I was.

Then I began to put short notes inside the card so that the next time my mother asked me to read it to her, I could read a new message with my daily thoughts to her. I could tell her that I loved her so very much and that I would always be there for her. That was the only way that I could communicate with her, as her daughter.

Our rescue dog Annie saved us from losing our home and our lives on four occasions when my mother started fires in the kitchen by placing cooking oil in saucepans and placing them on the cooker over maximum heat. Annie sensed and brought the imminent disaster to my attention if I happened to have fallen asleep in a chair from total exhaustion. That was the level of stress and danger that we lived with daily. It was only in the final six months of my mother’s time living at home that I heard about the Alzheimer’s Society of Ireland and asked if they could help us. They were wonderful and responded instantly to my request. They were able to provide four hours of home respite on alternate Wednesday afternoons, which was a priceless gift to us.

I saw a wonderful carer on those afternoons who understood what we were going through and who understood our plight. I could have a normal conversation with her. And I wept when I said farewell to her as she left our home on those afternoons because I knew that I would not see another person until she returned in two weeks’ time.

We lived like that from 2001 to 2007.

There are an estimated 335,000 family carers in Ireland in 2020. Collectively they save the State €10 billion annually because of the care they provide at home. Over 61 per cent of them provide 100 hours or more of care every week. Many of them live in lockdown with no end in sight.

Please, let us all remember them. They are a tireless and dedicated workforce. Sadly, they are also invisible to most of us. Forgotten lives. This has to change. – Yours, etc,

BERNADETTE BRADY,

Rathfarnham,

Dublin 16.