Juggling work, home-schooling, and full-time dementia care: Sara's coronavirus story

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.

Sara and her daughter smiling with Brian, who has dementia

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.

Two pictures of Brian with his granddaughter, Amy, enjoying a day outside

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.

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this is sad

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Well done to you both for staying strong and having the strength to take full time care on. I completely understand how tough it is. My dad has alzheimer's dementia, early onset which has been so hard! It has been so fast progressing. So hard to watch with some one who's still in his 50's.

I too now care for him full time with my mum and work full-time. Not easy at all. Services do need to improve to provide support to families and we definitely need more trained staff who understand the needs for someone suffering with this disease.

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I’m one of Sara’s closest friends and I’ve seen how this has taken its toll on the whole family, but mainly Sara and Aimee having to deal with everything on a day to day basis.
I take my hat off to Sara, she has dealt with everything face on that’s she has been faced with, trying to get on with her job and not mention being a mum, which isn’t easy at the best of times.
I think she has done an amazing job with Brian and having to make the toughest decisions that she will ever have to make for the best way possible for her dad.
I’m super proud of her and Aimee, they have done Brian proud.

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I very much feel for you as am in a similar position, as my husband who already has diabetes and was referred to hospital by our GP, contracted COV-19 after being in hospital ward for 10 days
and was there until a few weeks before Christmas after fighting for his life and has left his lungs
badly affected and with great loss of memory, and unable to care for himself.
At the present time he is in a care home, but I have been trying to arrange for his return to home, but because the care home accept other residents with COV-19. I cannot accept
him home until my sons whom are extremely vulnerable to have the COV 19, are vaccinated
but find there is no help to get this more fast tracked by the NHS and yet it was through the NHS system that took us all to where we are today, alone without husband or father and
lay the care responsibility bill on our lap!

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