Martyn Feather has cared for his mum Jean since she was diagnosed with vascular dementia five years ago. Jean is now in the later stages of the condition but Martyn continues to find ways to brighten her days. Here he shares their dementia journey
How was your mum diagnosed?
She was diagnosed in 2011 but it took a bit of time, several months I think. First we went to her GP then we were sent to a specialist who confirmed she had vascular dementia.
Looking back, were there any signs before that she might have dementia?
Yes, the diagnosis wasn’t a shock, I’d already seen it coming. As well as having memory issues, Mum had also developed a distinctive ‘shuffle’ when she walked and had forgotten how to use familiar household equipment like the washing machine. Mum’s brother had died with Alzheimer’s a few years before so I recognised some of the signs.
What happened after diagnosis?
We carried on as normal. I’d already moved her in with me because I was worried about her living alone so our living arrangements didn’t have to change. As for Mum, she continued to deny there was anything wrong.
How did you tell other people and what was their reaction?
Some people were great and some just didn’t understand and/or simply found it too difficult to deal with. Fear, perhaps.
What were the main challenges you faced and when did they happen?
Initially it was all about keeping her safe. She couldn’t cope with cooking anymore and fortunately didn’t protest too much when I took over – she was quite happy to watch TV while I made the dinner. She also had a habit of going out on her own and getting lost. Once, she woke up before me and went out. She was found by our local postman who brought her home. We used to joke that she’d been delivered by Royal Mail!
Mum insisted on opening her own post which I could hardly object to, but like a lot of vulnerable people she got caught up in a dodgy mail order scam, becoming convinced she was going to win lots of money. No matter how much I tried, I couldn’t reason with her – it was so frustrating, especially when she kept writing cheques believing she was going to win a prize… It was only when she was admitted to hospital with a urinary tract infection that I was able to intercept her post and put a stop to it.
The UTI kept her in hospital for three weeks and her condition worsened considerably. When she was discharged she was so weak she was virtually bed bound, I was given a hoist and various other bits of equipment to use which was quite intimidating at first, but I just had to get on with it.
Four years later Mum is 89 and remains bed bound. The main challenge is keeping her stimulated which requires quite a bit of imagination and ingenuity. I’ve found many ways to give her day meaning and structure. She has a doll which she absolutely loves, music, DVDs and lighting and they all help to make this possible. I now work from home so I can be with her all the time. My desk is in the hallway next to her bedroom so I keep an eye on her all day.
Have any services made a difference?
Agency carers visit Mum four times a day to support me and help with washing and changing.
Have any particular products or gadgets made life a bit easier?
A baby doll – I spotted this realistic looking baby doll in a shop and bought it instinctively. It was only later when I was looking through family photos and came across one of me as a baby that I realised the doll I’d bought was strikingly similar to me! Maybe that’s why I chose it – and why mum loves it so much. We call the doll Charlie (my late father’s name, not mine) because it’s a name that she’s familiar with. She talks to Charlie, kisses and cuddles him, tells him how good he is and occasionally tries to feed him. To say she is incredibly protective of him, would be a major understatement. If she gets upset or agitated, Charlie is there to help calm her and distract her from whatever is causing her distress. When people visit, they’re also amazed by the positive effects Charlie has had on Mum. I know some people don’t like doll therapy, believing it’s demeaning, but as far as I can see dolls seem to bring out the nurturing, protective instinct we all have (men included) when we sense vulnerability. So I’d definitely say give it a go.
Lighting – I use a lot of different coloured lighting systems in Mum’s room to provide visual stimulation. As well as fairy lights, I have a projector that creates patterns on the ceiling and a remote control colour changing light bulb that goes through a cycle of 16 different colours. I’m a graphic designer so I’m used to thinking visually and enjoy coming up with ways to entertain, calm and soothe her.
Music and TV – Mum still enjoys TV but if there’s a programme on where people are shouting at each other she can get quite stressed because she thinks they’re in the room, so I try to avoid programmes like that, especially in the evening when she needs to wind down and relax. She loves violinist and conductor Andre Rieu and becomes quite animated when I put on one of his DVDs. I also have a playlist of her favourite music on Spotify which she likes.
A day clock – I actually made my own day clock using a digital photo frame (as a graphic designer, it was quite easy for me to set up the images) and she finds it very helpful.
Has your experience of living with someone with dementia changed your perception of it?
It’s made me understand how complex dementia is and that we still have a lot to learn about it. Most of us going through it now are learning as we go along, but I think I was lucky to already have some experience with dementia before Mum was diagnosed. Apart from my uncle who had Alzheimer’s I also encountered dementia when I was a child of eight or nine. A friend’s grandmother had it – although it was called senile dementia back then – and I used to spend time visiting and playing cards with her. I learnt quite early on not to be afraid of dementia – which is really important, I think.
Any tips for other family carers?
Get out as often as you can. We have a reasonably sized supermarket within walking distance so instead of doing a weekly shop I make sure to go every day and buy what we need. I’m lucky enough to live by the sea so I go for walks along the beach whenever I can too – getting outside and walking is a great mood lifter, it also helps you to get things in perspective.
What lessons have you learnt?
The person you know and love is still there, so whenever possible try to see beyond the disease. Mum always had a wicked sense of humour and despite her increasing frailty and age, her humour can still sometimes shine through… However fleeting those moment are, I make sure to really enjoy them.