Olivia Barnett was only 19 when her mum Miriam was diagnosed with a rare form of Alzheimer’s. Here, Olivia reveals how she coped
How was your mum diagnosed?
Mum had lots of tests and scans at the hospital, including a lumbar puncture. I often went with her but for some reason on February 19 2011 she went alone and was diagnosed with a form of Alzheimer’s called Posterior Cortical Atrophy. I vividly remember her arriving back home and handing me a leaflet about PCA that she’d been given. I remember saying, ‘are you sure?’ and she replied, ‘Yes.’ I was 19 years old and her only child. We were incredibly close and I can’t imagine how difficult it must have been for her to tell me that news.
Looking back, were there any signs before that she was in the early stages of dementia?
Yes, she hadn’t been herself for ages and found it increasingly difficult to do stuff like phone a plumber if the boiler was playing up. I’d try doing it myself but then she’d lose her credit card and we’d have no way of paying for it! I was only about 16 but I knew about dementia because my Granny had lived with it. I assumed Mum was far too young to get it though, so when she started showing similar symptoms, shortly after Granny’s death, I put them down to grief and depression. I also blamed stress; she had a high pressured job as a BBC journalist. It was only when her personality began to change that I started to worry. Mum had always been such a kind, optimistic person so when she started getting moody, irritable and withdrawn I knew something was very wrong, I think she did too but she tried to hide it from me.
What happened after diagnosis?
Mum was in a bit of denial, determined to carry on as normal. She continued working for a while – I was always worried about her commuting but she refused to stop. Fortunately, I was still living at home with her on my gap year, I’d had plans to go abroad but I just couldn’t do it and spent the first six months with her, Googling everything I could about dementia and trying to find ways to help. Mum insisted I still went to university the following year. ‘I don’t want you to waste all your young life being my carer,’ she told me, and eventually I agreed, but it was the hardest thing I’ve ever done.
How did you tell other people and what was their reaction?
I’m quite a private person and I didn’t want anyone to pity me so I told very few friends my own age. Looking back, if Mum had been diagnosed with a brain tumour I think it might have been easier to talk about, and for my friends to understand, but dementia still has quite a stigma so I was worried they wouldn’t know what to say or do. I suppose there was also part of me that just wanted to fit in and be a normal teenager. When I went to uni I didn’t want to talk about it either… but if I did get emotional and open up (usually after a few glasses of wine) people were generally lovely. My Dad was great too, he really helped. I’m much closer to him now as a result.
What were the main challenges you faced and when did they happen?
At first the challenges were mainly practical. For example, Mum quickly forgot how to tie shoe laces or use a phone. Boredom was a big challenge too. She’d always been an avid reader so I continued buying her books to read, until one day I saw her reading a book upside down and realised I’d have to think of something else. Mum didn’t feel that she ‘fit in’ at social events or groups. ‘I’m in my fifties, I don’t belong here,’ she’d say.
Being younger also meant we both got some very strange looks if, for example, I started helping her to eat in a restaurant, or if I shared a cubicle with her in a public loo. Mum looked too young to need assistance. And if I got irritable with her when we were out shopping, it was awful. One day, I got annoyed with her for standing too near another person in a queue for the till. ‘Mum, you’re invading her space, please don’t,’ I said. ‘Olivia will you stop being such a pest,’ she replied, which was fair enough I suppose!
Eventually I discovered a great way to help her when she was feeling frustrated and stressed…we’d make water bombs and throw them around the garden. We both really loved doing that!
Mum also insisted on going for walks on her own which was very worrying. Sometimes I’d try to follow her but if she spotted me she’d be furious. Other times I’d end up calling the police if she didn’t come home.
When I went to Leeds University the main challenge was finding a suitable carer and trying to focus on studying when caring for Mum seemed so much more important. As a result, I travelled from Leeds to London frequently and worried about her incessantly.
As Mum deteriorated the challenges became different. When it became clear she’d need to move into a nursing home I felt angry, she was too young to be in a nursing home. It meant selling our home too which was pretty intense.
Mum was in the care home for three years. It’s was a lovely home and her practical needs were taken care of, though the challenges for me were more emotional. Finding ways to connect with her, or getting any kind of reaction, however small, were my biggest challenge. I never stopped trying.
Did any services make a difference?
We went to a local memory cafe which was a good support. But other services were either too far from home or weren’t suitable for her because she deteriorated quite fast.
Did any products make life a bit easier?
An automatic pill dispenser made checking Mum’s medication less stressful, I also bought brightly coloured crockery so that she could continue feeding herself for as long as possible. A large button phone came in useful too when I went to university because I called her every day. I bought her a busy cushion for Mother’s Day this year which she likes to stroke and cuddle.
Has your experience of living with someone with dementia changed your perception of it?
Definitely. I would never have known that people in their fifties could get dementia – and nor would any of my friends – if it wasn’t for Mum, and there are whole swathes of people just like me.
What lessons have you learnt and what advice would you pass on to others?
Mum’s dementia taught me to be more patient, to value the people I care about and let them know how much I care, while I still have them. And although a dementia diagnosis is really tough, it isn’t the end. One of my happiest memories with Mum took place a few months after she was diagnosed. It was a boiling hot June day and Mum, Dad and I went to see Elton John in an open air concert. When he sang Are You Ready For Love the three of us started dancing like idiots, just as we always would have. I still laugh when I think about that day – because it taught me that the fun doesn’t have to stop.
For more information on Posterior Cortical Atrophy, click here. For more information on Younger/Early Onset dementia, click here.
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