TV personality and builder Craig Phillips reveals his experiences of caring for his mum, who has dementia, and why he’s determined to stay positive
Since winning the first series of Channel 4 TV show Big Brother back in 2000, (in which he famously gave away his £100,000 prize to a child with Downs Syndrome) builder Craig, 44, has become a spokesperson and fundraiser for several charities. Craig also appears regularly as a presenter on TV makeover shows and runs his own construction training academy.
However, for the past decade his success has been tinged with sadness. Aged 59, Craig’s mum Brenda was diagnosed with early-onset Alzheimer’s. Now aged 70, Brenda lives in a care home and is extremely frail. Here Craig shares his experience of the dementia journey…
How was your mum diagnosed?
It took a long time and included various tests and examinations before we had the official diagnosis of Alzheimer’s. Mum was only 59 and had recently retired so it was really, really sad.
Looking back, where there any signs before that she was in the early stages of dementia
Yes, we’d suspected it for quite a while. I first picked up on it when Mum was about 57. I was working away from home on a TV makeover show and used to phone her three times a week. She loved to hear what I was doing and who I was working with and we’d have nice long chats. Then I’d phone again a couple of days later and we’d have exactly the same conversation because she hadn’t remembered the first one. I laughed it off at first but it did become worrying.
I started to ‘test’ her memory, purposefully asking her questions about things we’d spoken about earlier, which probably wasn’t the right thing to do but I needed to know the extent of the problem. Sure enough, she was remembering very little. I told my sister Bev and then we both told our stepdad Robbie. Within a few months they’d both begun to notice that Mum wasn’t just a bit forgetful, there was a serious problem.
What happened after diagnosis?
Nothing much changed. At first Mum laughed the diagnosis off and said there was nothing wrong with her. I don’t remember the word ‘Alzheimer’s’ being used much at all. Doctors would just say, ‘You know your memory is getting worse, perhaps you should take some medication to help improve it?’ It took a couple of years before she started to realise something was wrong. That’s when she started to get frustrated and really scared, which was upsetting for all of us.
What were the main challenges you faced and when did they happen?
Like most families we tended to act after a moment of crisis. In the same way that people buy a burglar alarm the day after they get burgled – when they really should have bought it the day before!
Persuading Mum’s husband, Robbie (my step dad), to accept help was difficult. He wanted to do everything for Mum himself and had the very best intentions, but as Mum’s condition progressed it became more and more difficult for him to cope. It was only after Mum had a couple of trips to hospital that he finally agreed she needed professional help and he let us bring in some great carers to support him. At first, it was only for an hour in the morning and evening, but gradually it increased.
Robbie hated the idea of Mum going into a care home too – nobody wants their partner to have to leave their home – but he wasn’t in the best of health himself. One night Robbie was trying to help her up the stairs to bed when Mum took a tumble – it wasn’t a major fall, but Robbie wasn’t strong enough to pull her up so she stayed on the floor until the ambulance arrived. It could have been a lot worse, but it was enough to make Robbie realise Mum needed full time care.
The main challenge right now is simply getting Mum to eat. She’s only 5ft 1 and was never a big lady but she’s lost so much weight in the last 12 months and it can take hours to get her to take a few tiny spoonfuls of food.
Emotionally of course it’s been heart-breaking. Mum was such a bubbly, vivacious person who went through some very tough times. My Dad was killed by a drink driver when I was 13 and she’d had to cope on her own after that, sometimes holding down three jobs at a time. Looking back, I do wonder if the trauma of losing dad in such a horrible way caused some damage to her brain, I’ve read some research which suggests this can happen.
I also wonder if she retired too early. She’d worked in the bar industry all her life and was very sociable. When she and Robbie retired they sold their pub and moved from an area where they had lots of friends to a quieter, wealthier place where they didn’t know many people. Mum stopped socialising and became a bit reclusive, and I couldn’t help wondering if this played a part in her illness, but of course I could be totally wrong and we’ll never know… But whatever the reason, Bev and I know we’ve lost our mum and have been grieving for the loss for a number of years now.
Have any services made a difference?
Bev and I went to a carers group which was very helpful. The staff at Mum’s care home are also fantastic. Bev went to school with some of them and we know they genuinely care. Mum has a good routine and she’s very well looked after. We trust them – that’s the peace of mind we want.
Have any products or gadgets made life a bit easier?
In the early days we bought Mum jigsaws to help her focus and tried all kinds of activities to stimulate her mind, but after a couple of years they didn’t work anymore. At one point she did spend a lot of time cleaning though. I even wondered if she was getting Obsessive Compulsive Disorder because she’d wipe the table down ten times when it wasn’t dirty. But Mum was always a very house proud person and so maybe she was just reverting to an old familiar behaviour which gave her a sense of satisfaction.
Has your experience of living with someone with dementia changed your perception of it?
I have to be honest, I’m frightened of it. I know it can be hereditary and the statistics are scary. But then nobody lives forever, so I just hope it doesn’t catch up with me as quickly as it did my mum.
Any tips for other families or advice you’d like to pass on?
Stay positive. In the years since Mum was diagnosed we’ve had many, many nice times with her and it’s important to stay as positive as possible – for everyone’s sake – and to focus on what you can still do, rather than what you can’t.
Don’t waste time checking your emails or looking at your phone when you’re with them. Cherish every moment you have, even when you find you can do less and less. Last summer we were able to take Mum to the park in her wheelchair, the summer before we were able to get her in the car and take her further afield. Now Mum can no longer walk or talk or sit upright. My aim this summer is simply to get her outside on the patio in her electronic chair so she can get some fresh air on her skin and a change of scenery.
Don’t dwell on the future. Remember everyone’s dementia journey is different and scare stories about what ‘might’ happen later don’t help, they’re just depressing. So don’t focus on how it could end…what’s the point? When the time comes, you’ll cope, just like we are doing now.