At the age of 54 I really believed that I had the world at my feet – hopefully as a 50+ reader you will feel the same. The children have flown the nest and if they are truly blessed will have children of their own and you can now settle down to spending quality time with your partner and the grandchildren, whilst still working and enjoying life with friends and family – a very nice work/life balance.
Yes, I believed that too, until one day Mum broke her hip and my whole life was flipped upside down and pretty well into chaos. The shock of the fall and subsequent operation led to Mum having Rapid Onset Dementia. I believed, wrongly, that Dementia came on quite slowly, with a few memory problems being the first tell-tale signs and then developing gradually. Not in Mum’s case: she came around from the anaesthetic and suddenly this lady who, at 90, had been bright and self-sufficient, with many friends and a better social life than me, had turned into a frightened 4 year-old who didn’t want me to leave her side – not even for a minute.
How one fall could bring about so much upset overnight I will never comprehend, but that was the situation I found myself in. I hadn’t even got any information on, or certainly understanding of, Dementia at this point, as there had been no warning signs.
I spent the next 6 months getting live-in carers to stay with Mum, whilst I was trying to juggle work and home life. I even put Mum into a care home for 2 weeks at one point. Sadly, neither of these solutions worked well for either of us. The live-in carers spoke with a strong accent which Mum couldn’t hear clearly and neither could they cook the traditional English food she loved. Spaghetti with olives and meatballs might be delicious, but Mum just wasn’t used to it. The Care Home was worse: Mum arrived back home doubly incontinent and petrified of water; I don’t know what happened during those 2 weeks (it had an Outstanding rating), but whatever it was it exacerbated both the Dementia and Mum’s need of me.
Mum was officially diagnosed with Vascular Dementia and Alzheimers about a month later by a Dementia consultant, with a MMSE score of 16 (moderate to severe Dementia). Not that a diagnosis as such helped, but it did finally put a stake in the ground as to what we were officially dealing with. Mum was offered pills that could potentially help slow down this horrible disease, but they had so many side-effects that I decided against putting her on them (given that she is sensitive to any tablets). Unfortunately the memory clinic that we attended withdrew support as we had refused the tablets: I understand this was because the clinic was ‘sponsored’ by a pharmaceutical company.
Social workers came and went, having talked a good talk, but sadly no help was forthcoming. Unfortunately, what you hear on the news is true: there is little money in the system to support the elderly with Dementia. Although Dementia is a disease, it is somehow categorized differently from cancer or other such devastating diseases.
So I realised pretty quickly that we were ‘on our own’ with no lifeline; Mum and I both had savings, but they were quickly eroded by the private cost of the excellent carers I brought in to support Mum with personal care and covering for me whilst I was working, as she couldn’t be left alone for more than 5 minutes without panicking and working herself into a frenzy.
Fast-forward four years and Mum is happily living at home with me. I turned my garage into a gorgeous single ensuite for her and she now loves telling people that she ‘lives in a garage’. (An upstairs bedroom wasn’t an option, even with a stair lift and gate, as she used to ‘wander’ at night and I didn’t dare risk her falling down the stairs and breaking her hip again).
So today we live happily side by side, with carers coming and going; I have learned so much and made so many mistakes over the years, including several errors of judgement with the carers I employed in the early days, but now we have a wonderful team of three who all work part-time and they all get on together and cover for each other.
I’m not saying that life is easier now, exactly, but it’s certainly better organised and more importantly Mum is now happier and healthier than she was, as long as someone is with her 24/7.
Routine has become the order of the day, with short trips out to garden centres or a whizz in her pink wheelchair around the supermarket and the odd lunch out or bbq in the garden.
It’s taken years of patience and dedication but if you spoke to Mum today you simply would not realise that she has Dementia; she can read and write again, is calm and happy and is no longer doubly incontinent (though sadly she is still petrified of water).
There is no official cure for Dementia, but Mum’s quality of life has vastly improved, she doesn’t call me ‘Mother ‘any more, she now recognises people, remembers names and interacts, and loves to watch the news and discuss Brexit!
If your loved one is diagnosed with any form of Dementia, your head will be spinning and you will fear the worst, but I want you to know that there is hope. I discovered that concentrating on what Mum can do, rather than listening to others telling me what she can’t, has put us in a far happier place.
But you can’t do everything at once, and you’ll need help, so take a deep breath and check out some fantastic organisations such as Action for Carers, Age UK or Alzheimers UK. For me, the most useful support and advice has come from a Facebook group called Dementia Carers Support Group UK; they are all carers looking after someone with Dementia and they are pretty much open 24/7 and they are so helpful.
Your loved one is still your loved one, never give up on them, or yourself.
Author of Pink Slippers – Mum, Dementia and Me – A Story of Hope, published by Practical Inspiration Publishing, £9.99