Stephanie Le Geyt, 27, shares her experience of caring for her mum Denise with her father and two sisters. Denise was diagnosed with early-onset dementia at the age of 53.
How was your mum diagnosed?
Mum was worried about her memory and started going for various tests from early 2009, sometimes with my aunt, and was officially diagnosed with early-onset Alzheimer’s in the summer of 2010 with my dad beside her. I was 22 and I’d just graduated from university but I honestly don’t remember the precise moment I was told about it – I think, perhaps, I’ve blocked it out – but I do remember Mum and Dad both insisting that me and my sisters Jax and Kimberlie shouldn’t worry that we were going to get it. Apparently, Mum’s first concern had been that she might pass it on to us, which was typical of her because she was so kind and caring, but doctors had assured her that wasn’t the case, and that her diagnosis was just horrible bad luck.
Looking back were there any signs before that she was in the early stages of dementia?
Whilst the diagnosis came as a complete shock because she was so young, it did also make some sense. She’d become moody, scatty and forgetful over the last few years and her inability to remember the punch line of a joke had become a bit of a family joke in itself. Mum was an incredibly smart woman – as a child she’d been put in a class two years ahead of her year group because she was so bright. So on reflection I do wonder if she’d been ‘getting around’ her failing memory for a long time.
What happened after diagnosis?
As a family we went into proactive mode, trying to work out how we would manage it. Mum’s symptoms were still mild although by the time she was diagnosed, she’d already quit her job as a physiotherapist (in December 2009). She’d found the paperwork was getting too much for her, but I think she was also aware that she didn’t want to play around with other people’s health when she wasn’t 100%.
She was prescribed Aricept which I’m sure helped to slow down her deterioration. After about six months though she decided it was time to retire, and would just potter around at home while Dad was at work. He’d phone her to remind her to eat lunch or keep appointments, but she didn’t really need any more support than that. Our aim was to help her have as normal a life as possible, whilst constantly adapting to her changing needs.
How did you tell other people and what was their reaction?
At first I’d say, “Mum has Alzheimer’s but you wouldn’t know it.” I suppose I was in a bit of denial but it was partially true because she did manage to hide it well. To people who didn’t know her well she may have appeared a bit shy and hesitant, but she still laughed when others laughed and was physically active. People we told were generally very kind, thought they were full of disbelief, their first question was usually, “but how old is she?” and I could see them struggling to do the maths. Some old family friends drifted away, because I guess they couldn’t handle it. But we each have our own very strong support networks – and each other. Mum and Dad have also made some great new friends since.
What were the main challenges you faced and when did they happen?
Deciding when Mum should stop driving was one of our biggest challenges. She’d always driven and it was very important for her and Dad that she remained independent for as long as possible, but it was so difficult to judge whether she was really well enough. In fact, it was a constant worry whether she’d hurt herself or someone else. The doctor just left it up to us to make the decision and we probably let Mum continue driving for longer than she should. The moment we all knew she had to stop was when a mechanic who’d been doing some work on her car phoned Dad and said, “I don’t know what’s the matter with your wife but she shouldn’t be driving.” On reflection, I suppose it took an external person to say what we’d all feared.
A period of time when Mum refused to sleep was also incredibly difficult for Dad. He’s an engineer and was working full time, and for about 10 months Mum was up and down so often during the night that it impacted on his health too. Now, thankfully, her sleep has settled down.
Maintaining their social life was a challenge too. Mum and Dad were both pretty frustrated by the fact that the people they met at dementia support groups were all 20 or 30 years older than they were – they were facing different challenges to my mum’s early onset condition. Eventually, Dad set up his own support group for younger couples called The Dire Straits. They meet in pubs, go to gigs and have meals at each other’s houses and it’s been fantastic. I’d say they have a better social life now than they did before!
Creating a daily routine which keeps Mum safe and happy is a constant challenge. Dad now works four days a week and carers come in to look after Mum when he’s at work, but there are still short periods when she’s alone and while we have mum-proofed the house there can always be accidents. My sisters and I help as much as we can – I go home a couple of times a week to give Dad a break – but caring for someone with dementia isn’t straightforward, it’s messy and each day it’s messy in a different way. One of the hardest parts for me has been learning to live with constant worry. I often find myself wondering, will something go wrong today?
Mum is now in the mid to late stages, and she isn’t the person she used to be. Each time I see her I think, ‘it can’t get much worse than this,’ but then it does. Dad has said recently that it’s like watching a car crash in slow motion. Mum’s still fighting it like the trooper she is but it’s tough not knowing what’s going on in her head as she can’t communicate very well.
Have any services made a difference?
Yes, we have a very good GP and we get a lot of financial help from the Local Authority. At one point we weren’t happy with one of the care agencies we were using and it was super stressful. Now, after six years, we’ve ended up with the best team ever, they are a bunch of incredible women who take her out and often get her laughing and dancing. She’s got a good care plan.
What about work? Have employers been sympathetic?
Generally yes, but it does vary. I wouldn’t say my Dad’s company has been as flexible as they ought to be considering he’s given so many years to them. One company I worked for was brilliant. My manager told me, “You work to live, you don’t live to work,” which was great advice and insisted I worked from my parents’ home one day a week, which was a fantastic help. The next company I worked for was different and didn’t want me to leave half an hour early, one day a month, so I could go home and give Dad a break. I left after six weeks. My current employers are much better. I’ve only worked here four months but I already feel supported. If I need to leave early, providing my team knows about it, it isn’t a problem. I like what I do and I am quite ambitious but Mum and family are my life.
Personally, I think it’s best to be open with your employer about the demands of being a carer. If they’re good employers and value you, they will work out a way to get the best out of you, while still allowing you to be where you need to be. If they don’t respond in this way, then if it’s at all possible I’d try to find another job. The dementia journey only gets harder and you don’t need negative people around you when life is already this tough.
Have any particular products or gadgets made life a bit easier?
Yes, there are so many!
A double shower
Getting Mum showered had become really dangerous, but having a double shower fitted, with anti-slip mats and grab rails has transformed things – now they can both shower together relatively safely and calmly.
We probably use this more now than ever. Dad Facetimes Mum every day at lunchtime, and we also use Skype a lot. When Jax was in Kenya last year she’d leave Skype video messages and Mum could watch them over and over again. At Christmas I made a home video mash-up which she loves and we often leave it playing in the background.
We realised that Mum would only eat off white plates so we’ve now got loads of them!
We’ve had several phones which have all helped at different stages. We had one which used photographs and Mum just had to press the button next to the photograph if she wanted to speak to one of us. It was amazing, but Mum can’t really use a phone now.
Big red book
We have a lot of carers coming into the house, so it’s essential that everyone communicates properly, all the time. Dad has a big red book which everyone writes in, explaining what Mum has done with them, what she’s eaten, how she’s been feeling and any medication she’s taken. It’s simple and it works.
This is one of my most recent purchases. Mum isn’t eating as much as she used to so I’m hoping this will at least help her to boost her fruit and veg intake.
Has your experience of living with someone with dementia changed your perception of it?
Yes, I get annoyed now when people say dementia is just part of getting older. It’s not. It’s a disease which wears away at the brain, it can be eradicated, we just haven’t found out how to do this yet. I’m also more aware of how much people fear it too.
What lessons have you learnt and what advice would you pass on to other families?
Watching Mum gradually deteriorate is very upsetting and I’ve learnt that there’s no right or wrong way to deal with that sense of loss. I tend to put my feelings about that in a box to deal with later but I suppose the main things I’ve learnt are:
Don’t bury your head in the sand, as tempting as it is. Instead, prepare for the next stage so that if things go wrong, you already have a plan in place to cope. The earlier you sort out the financial side the better. We sorted out Mum’s Lasting Power of Attorney quite early on and I’m very thankful for that. Generally, the sooner you introduce your loved one to carers and services they might need later, the easier it will be for all of you to adapt.
Make the most of whatever brings them happiness
Mum loves ice cream and dancing so we try to do those things as much as we can. Seeing her smiling and happy, and knowing she still has the capacity for happiness, makes us feel happier, too. Make sure you take lots of photos to capture these happy moments. Try not to get upset if they won’t eat a meal they used to enjoy or sing a song they always loved. It might make you feel better if they did, but would it really make them any happier? Perhaps they’re fine as they are.
Value your family
I’m really close to my sisters now which definitely helps. I speak to Dad every day – he’s been grieving for six years but still keeps going, I don’t know how he does it. Emotionally it’s always going to be hard. You see the worst parts of yourself as well as the best parts but the journey is a gradual one, and you have time. If you lost a loved one tomorrow you may be full of regrets that you didn’t spend enough time with them, but I won’t have that because I see a lot more of Mum than I probably would have if she was well. Not many 27-year-olds go to see their mum twice a week, but I do and in a funny kind of way I think that makes me lucky.