LOSING MUM: A HEARTFELT JOURNEY THROUGH DEMENTIA'S CRUEL GRIP
In this moving and personal account, Sydney author Sarah Jones shares the heartbreaking journey of her mother's battle with dementia. Through raw and candid storytelling, she explores the emotional toll of seeing her once-vivacious mother transformed by Frontotemporal Lobar Degeneration (FTLD). With a relatable blend of humour and honesty, this book offers comfort to those grappling with the loss of a loved one to this devastating disease. Here is an extract. from her new book, Dementia Who Are You and What Have You Done With My Mother?
If you’ve ever done one of those jigsaw puzzles with hundreds of tiny pieces, you will know how frustrating it is when you are nearing completion and realise there are a few pieces missing. All that work and it will never be finished.
You can see the finished masterpiece on the side of the box, but your puzzle still has gaping holes in it. A life with dementia feels like this in reverse. You start with a beautiful picture and can see clearly who the person is.
They look just like they should, the image on the box a perfect replica of what is set before you. But gradually, pieces of the puzzle are removed, tiny piece by tiny piece, until you are left with gaping holes.
This wretched disease claws at the very soul, dismantling the picture and making it almost impossible to see the essence of the afflicted person. All you are left with are lots of tiny pieces of blue that could be either sky or ocean. The picture can never be put back together again.Â
Mum was incredibly underweight immediately prior to her admission to full-time care. Months of forgetting to feed herself had resulted in a tiny, frail frame. She weighed less than fifty kilograms and had slipped down to a mere size eight for her dresses. She looked unhealthily skinny; she didn’t even look like Mum.Â
Once ensconced in Leafy Lodge though, indulging in three hearty meals a day plus morning and afternoon teas, she began to fill out and once again took on her familiar frame. While it was great to see Mum looking more physically robust and healthy, it was problematic where her wardrobe was concerned.
I would regularly receive a friendly call to ask whether I might be able to please take Mum shopping and invest in some roomier outfits for her expanding waistline. No problem. It sounds easy in theory, right? In practice, it was anything but.Â
We trudged down to the local shopping centre and into one of Mum’s favourite shops. Holding up outfits, I would ask, ‘Do you like this, Mum?’, to which she’d beam back at me and say, ‘Yes! It’s lovely!’ Great. Progress.
By the time we worked our way to the change rooms, I had an armful of potentials for her to try.Â
‘Okay, Mum. Let’s get you in here and try these things on.’ ‘What do you mean? I’m not trying anything on! You try them!’ ‘No, Mum, we’re here to get you some new clothes. You need to get undressed.’‘ I will do nothing of the sort. ’‘Come on, Mum.’‘You come on. I’m not getting undressed.’ It was a Mexican stand-off.
With her handbag on her shoulder, she had her arms so tightly folded her knuckles were turning white. My frustration levels were rising; if I’d been in a cartoon, it would have been time for the train whistle to sound and for steam to shoot out of my ears.
As I tried to wrangle her bag off her and force an arm through the armhole of a pretty floral number, we somewhat aroused the interest of the wary shopkeeper. We were virtually wrestling. Mum’s cries of protest, coupled with my dogged determination to get her into something, anything, even if it was over her own clothes, were sparking some concern, not only from the staff but also among our fellow shoppers. It wasn’t good.Â
Reluctantly, I had to back down and admit defeat. Whispering for fear of Mum’s dementia-fuelled wrath, I explained my predicament and Mum’s condition to the perplexed shop assistant.Â
She looked relieved. I took a gamble with the sizes and went with Mum to pay the bill. Mum, with a wallet bereft of all but an expired Medicare card, insisted on paying for ‘my’ things. Before I’d had a chance to say, ‘I don’t think this shop accepts American Express ... or ... um ... Medicare ...’ the beautiful shop assistant had taken Mum’s Medicare card, pretended to swipe it through her machine and handed a voucher to Mum to sign.
She winked at me and I slipped her my credit card across the counter. I could tell it meant so much to Mum to do something ‘normal’ for a change. That woman’s kindness was such a gift that day.Â
Early on in Mum’s stay at Leafy Lodge, I was hanging clothes in her wardrobe when a staff member began chatting to me about what lay ahead for Mum. She told me that eventually Mum would forget the order in which to put on her clothes.
She went on to say that dementia patients might put their shirt on, followed by their bra or singlet over the top. It was common for pants to be pulled on, only to be followed by an outer layer of underpants for good measure. Superhero dressing!
At the time, I had my doubts, thinking surely that would never happen to Mum. It was both daunting and hard to comprehend what might lie ahead.Â
Years on from that discussion, I learnt that the staff member had been right. Mum needed assistance to shower, brush her teeth, do her hair and, of course, to dress. Privately, I would have loved for those dear residents to be left to their own devices just for one day. I’d provide the capes!Â
‘Dementia Who Are You and What Have You Done With My Mother?’ is available from the author’s website, Booktopia and selected bookstores.