Dementia – it will come to many of us in varying degrees, and it has come to my mum in recent years. I’m no expert in these matters, and my experience is purely personal, however it has been a steep learning curve for me. When my mum was diagnosed with Vascular Dementia in 2014, I really had no idea what lay ahead for her, nor me – I am her only surviving family member and so am solely responsible for her welfare, her safety, her health, her happiness and what I seek to create for her; a rewarding and wholesome life. I circle around her, scooping up the debris, sorting out the misdemeanors, picking up the pieces from her mishaps as her dementia develops and she inadvertently creates havoc amongst those around her. Although I spend plenty of time ironing out the complexities of life for her, making it all simple and manageable, we also have together time, just as it should be. Looking after a loved one with dementia is perhaps the hardest thing I’ve ever had to do, as I see the mum I know and love slipping away from me as I attempt to keep life in the demented lane as non-demented and as ordinary as possible. Surprisingly, our biggest challenge so far, has been the lack of understanding of Dementia in society generally with most people thinking it’s simply a loss of memory. There’s often no comprehension of the confusion it brings, the hallucinations, the conversations full of nonsense which superficially appear believable to the unsuspecting recipient of her news – my mum can happily describe a trip she had yesterday which never happened, only I know it’s not true – and I’ve learnt to let them go to spare embarrassment. Taking her to medical appointments has proved troubling too, dealing with clinical professionals who have little experience and no training in dealing with a demented patient.
We have a good support network, paid care workers, my husband, sons and daughter in law all help along the way, but it is the subtleties of every day life with mum that make it difficult and for some of these it is only I as her daughter who can pick up on them. My mum was, and still is at age 85, a very beautiful lady, so I ensure the daily routines which have always been important to her are maintained; her colour coordinated outfits chosen, her favourite shade of lipstick applied, nails painted, perfume sprayed liberally. We have a little mantra before going out, ‘lips, hair, perfume’, I use it to settle her mind and remind her all is as it used to be, as she would never have faced the world without her make up pre dementia – unlike me!
We still do the things we’ve always done, mother and daughter shopping trips, lunch out and, with the help of my dedicated husband, we even manage the occasional holiday all together. We go to places she and my father took me to as a child, stimulating memories for her and me, and both enjoying the togetherness it brings. Last year she met Shakespeare in Stratford, recently we took her to Cumbria, where she met Wordsworth and even learnt to use Google Maps to navigate us, stimulating her brain at the same time as giving us pleasure and satisfaction that we are helping her to maintain her place in the wider world. We include her in weekend activities when her disabilities allow, she loved the Conwy Feast recently where she ate her first ever street food, fried plantain for lunch! I take her (and her friend) to the dementia friendly screenings at the local cinema, we’ll be seeing White Christmas (singalong version!!) very soon.
The purpose: the sheer joy I feel when I see her face light up when a long gone memory pops into her mind, and of course to create new ones, if only for me.
People try to show support by expressing sympathy, but the reality feels very different to me – simply put I would not have this any other way. Obviously I wish mum was living life without this dreadful illness, but we are where we are, and overall she is just a family member who needs extra help, more input, and as much time as I have to give. The same went for my boys when they were young, they were my complete focus in life – their welfare paramount – and an elderly family member with dementia is no different. My role is to make sure mum is happy and cared for. Life in the demented lane is not all bad, it’s just been a matter of familiarising ourselves with the thought processes in mum’s head, becoming more accustomed to her new ways of seeing the world, then adapting, changing lanes, but recognising it’s the same family member we know and love, just with different needs.
Adjusting to a life with dementia in the family has not been an easy ride, but it’s a ride we are on together and in my mum’s company is where I want to be.
To become a dementia friend and understand this condition, look here https://www.dementiafriends.org.uk