Over the past year, Sara and her family have been caring for her dad, Brian, who has frontemporal dementia. As we mark Coronavirus Action Day on 1 March, Sara is demanding better support from Government.
A year ago, in March 2020, my dad, Brian lived relatively independently with support. Every day, he would be collected by the local bus service to make his way to the day centre.
Dad lived through structure and routine; a love for getting outdoors and an ice cream at the park. However, overnight, this lifeline was taken away from him, and overnight I saw my dad go downhill.
As the day centre closed its doors due to coronavirus, Dad became frustrated and restless and his full-time care fell into my hands.
In April, I was left with the challenging but only decision possible, for myself, my husband and my eleven-year-old daughter, Aimee, to move in with Dad.
Juggling work, home-schooling, and full-time care, we did our absolute best.
On good days, break-times for Aimee were cuddling up to her Grandad and reading to him. For me, it was witnessing the fun they have in each other’s company.
But on bad days, Dad was up and down the stairs, pacing around the house, back across the room and unable to leave my side.
There was no support available to support Dad living with us because of the pandemic.
Due to his frontotemporal dementia, Dad lost his ability to communicate, and when his discomfort grew, understanding his needs became trickier and trickier.
With a massive neurological decline and a lack of support and guidance from the care system, it soon became too much.
Shortly after entering respite care, Dad had a number of falls.
At 6’2 he is a gentle giant, and a very tactile man however, without the correct care and attention, he can tumble very far. Within 36 hours, Dad had three falls.
Negligence in the system resulted in a battle to visit him in hospital and an even longer battle to place him in a different care home.
One year since the start of the pandemic
While a year on, both Dad and I feel more settled, now the challenge we face is distance, a lack of connection and the deterioration that COVID-19 has caused to Dad’s condition.
With an old head on her young shoulders, Aimee would love to bake for Dad and the other residents, or simply get to know those who sit with her grandad just like she did. But the Government’s recent guidance is simply not enough for me to let her know with certainty when this can happen.
Kids don’t see the difference, to her he is still just her grandad.
This year, I have seen care in every form. The care my daughter gives to my dad, the care Cathy, a Dementia Support Worker at Alzheimer’s Society, has given me, but also the care provided by a system that has been stretched to its limit by the pandemic.
Now, I’m calling for better care from the Government.
Almost a year into the pandemic, I don’t want any more time wasted.
A withdrawal of support, neglect and poor communication from many services has pushed Dad further into his dementia.
Enough is enough
People living with dementia, their loved ones and their carers, remain hardest hit by the heartbreak and loss of coronavirus. This is mainly as a result of a social care system that is not fit for purpose.
Local and national action is needed to ensure that, never again, will people affected by dementia face such hardship and loss.
Stand with us
Support Brian, Sara and Aimee today to ensure people affected by dementia, who have been worst hit by the pandemic, are prioritised in recovery and care, now and indefinitely.