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An Unforgettable journey

When James Ashwell realised the extent of his mum’s dementia, he and his brother moved back home and promised her she wouldn’t have to go through it alone.

James Ashwell and Mum web

Keeping this promise as his mum declined steadily over the next five years is the hardest thing James has ever done.

As he found ways to cope with the stress and sleeplessness and enjoy moments of happiness and hilarity, James found a passion he never knew he possessed: to discover great products to help other people affected by dementia to cope better and know they are not alone.  Read about the five products that made James' journey a little easier »

Mum’s increasingly disorganised behaviour and moments of sadness were something I learned to live with as a teenager, blaming her hormones, tiredness or simple forgetfulness. I feel terrible when I remember how irritated I got when she developed a habit of chewing repetitively with her mouth empty.

"We knew she was ill, but none of my siblings realised just how far her illness had progressed."

When she picked me up from army cadets one day and started driving home on the wrong side of the road it dawned on me that there was more to it. We knew she was ill, but none of my siblings realised just how far her illness had progressed until 17 January 2006 – just before I turned 25. I received a phone call at work informing me that Dad had died suddenly a few hours previously. I put on my jacket, walked out the office and never returned. 

James Ashwell parents webMum and Dad had been happily married since 1968. They were a good team. Dad worked extremely hard and, aged 64, he was looking forward to retiring and enjoying his sunset years with Mum. Maybe that’s why he couldn’t bring himself to tell us that Mum had been diagnosed with frontotemporal dementia in 2003. He played it down, which wasn’t too difficult because by then we’d all left home. I was a strategy consultant, my brothers were a doctor and an estate agent, and my sister was at medical school.

"Dad's death changed everything in my life."

Dad’s death changed everything in my life. Once I’d moved back with Mum, it was clear that her condition had worsened considerably, compounded no doubt by grief. I was a gung-ho 25-year-old and didn’t have a clue what caring for a mum with dementia might entail.

I was very fortunate to have siblings all prepared to help practically and financially. My brother Mark moved back home, too, which was just as well because those first few years were absolute hell.

The first time I took Mum to the memory clinic, she dressed nicely, looked lovely and answered all the questions in the Mini Mental State Examination surprisingly well, but I was falling apart. I had a thousand questions for the doctor – including “Is she going to die?” – and only five minutes of allotted time to ask them. In fact, I felt so overwhelmed that I burst into tears in front of the doctor.

"The toughest part was the lack of sleep."

James Ashwell and family webEventually Mark and I did what most other carers do; we learnt to muddle through each day as best we could, always mindful that at least we had each other. How, I wondered, did people cope on their own?

The toughest part was the lack of sleep. Mum got day and night mixed up, and we’d find her packing suitcases for an imaginary holiday at 3am, or getting dressed for a lunch date at 4am.

Sometimes Mark and I didn’t sleep much for a week and the stress and tiredness took their toll as they do with many families. One night we had a fight about nothing – we actually punched each other – but looking back I can see that the pressures were simply too much for both of us.

"This trauma forced us to start coming up with creative ways to make life more manageable."

This trauma forced us to start coming up with creative ways to make life more manageable. I remember tying string to Mum’s bedroom door and putting it on my finger so I’d know if she left her room in the night! Looking back, it seems silly. But at the time, I genuinely didn’t know what else I could do or where I could go for help. That’s how it feels when we’re under such stress.

We also applied our imaginations to making life better for Mum. We quickly realised that if Mum wasn’t going to spend all day sat staring at the TV, we needed to find new ways to keep her busy and give her a sense of purpose. If only we could find ways to bring her back. We wanted more than anything to see her face light up, and those moments when she looked happy or excited, however brief, became precious.

"Mum and I worked together on a bucket list and did everything on it."

James Ashwell bucket list webMum and I worked together on a bucket list and did everything on it – including going to Venice where Mum did horse-riding for the very first time. But the dementia journey is long, and even if you can afford special trips and outings, you can’t spend every day doing them.

We soon discovered that visiting garden centres or going to McDonalds for milkshakes (even if Mum did insist on walking through the drive thru!) brought her pleasure too, as did jigsaws, jewellery-making, drawing and colouring books – although we all fervently wished we could find some that weren’t designed for children.

Mum declined steadily during the five years I was caring for her, gradually losing the ability to do most things for herself. But there were four siblings, and together we were fortunate enough to be able to pay for extra support from professional careworkers to help us out when things got really tough. And we still had many happy, hilarious moments with her, right to the end of her life.

She died peacefully at home on 17 February 2011, a few hours after I turned 30. She was aged just 67. If there is such a thing as a good death, I’d like to think that she had it. I’m proud that she had only one hospital admission, though this may not be possible for everyone.

James Ashwell Mum webLooking back, I realised how lucky I was to have had a mum who gave everything for her children. That’s why I wanted to give something back. I recognised how much I’d learned from other carers of people with dementia, as we shared our efforts not only to cope with the practical aspects of the condition but to seize every opportunity to connect – however fleetingly – with our loved ones as we knew them.

Ultimately, I discovered how passionately I hold the belief that it is possible to cope with dementia and how motivated I was to help other people discover products and services which could really help them.

  • This article first appeared in Caring magazine issue 41. Packed full of news, information and features on all things caring, the magazine is out four times a year for Carers UK members. To get your copy, join us.
  • James went on to found Unforgettable in 2015, bringing together specialised products, practical advice and a supportive community to help those affected by memory loss and dementia. Carers UK is delighted to have come on board as a charitable partner of Unforgettable. For more information click here.

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