What I learned from going into lockdown with my grandad who has dementia

With dementia, you never know what kind of day you’re going to wake up to. Add in a global pandemic and suddenly, nothing is certain anymore.

My grandad has always been a solid and reliable presence in my life. We lost my wonderful grandma when I was 15 – so for 10 years, he has soldiered on alone, trying to find his feet in life as a widower.

In July 2018, Grandad found out he had dementia and it truly seemed like the blow he didn’t deserve.

Due to the nature of the disease, the rate of progression is different for every patient, but we were relatively optimistic with his prognosis as the medical team didn’t think it had progressed much at first.

He was accepting of the situation and keen to not let it affect him as much as he was able at the time.

Before he came to stay with us, Grandad was living alone. He had a cleaner who came twice a week, meals were delivered daily and he had a daily companion service, which was a two hour visit to check he was eating.

Due to coronavirus, these services were due to be withdrawn because they weren’t classed as essential. Unfortunately, he also had a fall sometime in the night and wasn’t found until the next morning by his cleaner.

Because of all the risks of him being alone with no regular help, it was safer to bring him down from his home in York to our small village in Wiltshire. This happened just two days before the Government’s announcement of the lockdown on 23 March.

This was a huge decision for my mum. As a physio for the NHS, her workload had increased tenfold. She was supporting the hospital to cope with the ever growing waves of infection as Covid-19 spread and naturally, she was concerned at the prospect of her 87-year-old father being exposed.

At the same time, I made the decision to quit my job and leave London to move back home too. As a 25-year-old woman, this was a difficult decision because my independence was as precious to me as my pretentious oat milk preferences.

I returned home and set about helping Mum transition Grandad into his new life, all the while naively assuming I’d be back within the month.

Within those first few weeks, my lack of routine and ability to plan ahead put me into a deep state of anxiety. I struggled to get out of bed before midday and found myself endlessly scrolling through social media platforms – unable to see beyond the next few hours, let alone months.

Despite this, I was not totally alone. My grandad – whose own world had been tipped on its head and moved 400 miles south – was also scrambling to find a new routine in the circumstances. Every morning, he spent four hours getting dressed.

This is because one of the side-effects of dementia is an increase in OCD behaviours. It is said to be the brain’s way of coping with a lack of control – to compulsively check the most immediate memories they have stored. However, this can cause them to get stuck in patterns that last longer than usual.

For Grandad, this could be opening the same drawers three times or folding and unfolding his handkerchiefs. Admittedly, his outfits were always beautifully coordinated. 

We also had to remind him to shower an average of seven times before he stepped into the bathroom, but he always remembered to lather, rinse and repeat.

Gradually, I began to slip into his routine beside him; waking up together for a coffee in the morning sun, doing an afternoon walk around the estate and settling down together to watch reruns of Downton Abbey.

Seeing him work so hard to adjust, I began to look into ways to help him settle into his new life. Dementia UK was an extremely helpful resource – suggesting introducing new elements into the person’s routine and involving them along the way to help them gain some of their confidence back.

We’d cook together and before long, Grandad was soon promoted to sous-chef and was taste testing my Dalgona coffee phase, Yorkshire-inspired beer battered fish and chips, and my many, many attempts at banana bread.

His notorious sweet tooth had only increased with age, so usually I had to hide the sweet treats we’d made together, as often he’d forget how many he’d already had (though we’re still unsure if this was selective memory or dementia).

It wasn’t always easy though. There was a lot of shouting, swearing and frustration when things weren’t going his way. A lot of the time he took it out on my step dad and younger brother, and occasionally reverted to sexist comments when he thought me and mum weren’t pulling our weight enough in the kitchen or cleaning stakes.

However, where others were sensitive to these sudden changes in demeanour, I felt his comments roll easily off my back. I spent my days reassuring the rest of my family that it wasn’t him, it was the disease.

Our time spent together made me appreciate the art of patience in a wholly unexpected way. As someone who came from a city where everything was instantly available to you, I found myself relearning the natural rhythms of human nature.

We began to work cohesively as a family unit; supporting, listening and becoming each other’s anchors and allies, in a place where control was lost with every new day we gained.

When Mum contracted the virus – after setting up a voluntary palliative care service on Covid wards – we were very careful to separate her away from Grandad.

After four days of not really seeing his daughter, I found him sitting quietly at the breakfast table, questioning why she had kept to her room for the last few days.

He looked up and asked me, completely deadpan: ‘So, is she pregnant then?’

I struggled to keep a straight face as I explained that my 55-year-old mother was not pregnant, but just resting. He shrugged and went back to his marmalade on toast.

At the start of July and as things slowly opened back up, we took a family holiday to Poole to stay at an AirBnB, before I returned to London. It was a celebration but also a farewell – the closing of a bittersweet chapter for us all.

On the final evening, I sat with my grandad in the conservatory before dinner. As we quietly read beside each other, I leant into his shoulder for a quick hug. He pulled me in, smelling of Werthers and talc as he always did.

We sat like that for a few minutes, before I whispered in his ear: ‘Am I your favourite, Grandad?’

He threw back his head and laughed loud and long, before pulling me back in and whispering: ‘Of course, darling.’

What struck me the most about my time with him was what we might have missed had he not come down to live with us. It made me upset to think that he wouldn’t have showered, eaten, drunk or left the house had there not been someone there to remind him to do so.

To think that so many people with dementia are in that situation is honestly heart-breaking.

The moments where he was himself were still there, but they were becoming fewer and far between – I felt our relationship had flipped a complete 180 degrees, where he was now being cared for like a child and us being the caregivers. 

He will now be living with my mum going forward. They decided over lockdown to put his house on the market and it has since sold – they’ve modified the downstairs room so that he doesn’t have to use the stairs and she’s begun to look into having a carer come to our house in lieu of the service he received in York now that everyone’s gone back to work and school. 

On the train ride home, I couldn’t help but cry. Arriving back to a quiet flat, I felt a sudden pang for the comfort of home.

I’m lucky to have been able to spend that time with my grandad and I’m aware not everyone has had that opportunity. His resilience highlighted how even during uncertain times, making the most out of the hands we are dealt is all we can do.

I am extremely grateful to him and to my family for all we shared; it’s certainly not a time I will forget in a hurry.

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