Dementia – Peeling away the layers of our lives

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Mum seems happy but I oscillate between hope and hopelessness.

What a struggle. I’m holding the fridge’s door open and looking inside the refrigerator for an apple but four packs of unfinished sliced bread and cartons of milk block my view of the fridge’s content. I remove the packs of stale bread and uncover a smorgasbord of leftovers. Pieces of cheese wrapped in cling film, an open can of condensed milk, a forgotten melon quarter, two tubs of butter – one without the lid – and countless small containers I dare not open. I squat in front of the fridge and move a few things around but still could not find the apple. Thankfully, I don’t smell rotten food but I get a whiff that mum’s chaotic fridge is an indication that dementia is doing more than eroding her memory – it’s changing her reality and making her store her apples in another world.

Lately, she has begun to fixate on things like organising the pantry (or disorganising it!), emptying the contents of her handbag as if she is looking for something, rearranging the food in the fridge and keeping leftovers. She repetitively performs these tasks and when she enters this ‘repetition zone’ it looks like she is signing off from the world we share together.

The cold air from the fridge is blasting on my face but I feel drops of sweat trickling down my spine. I close the door and lean against the kitchen wall thinking that as dementia erases most of my mum’s recollections of immediate experiences (she still retains most of her long-term memories), she is losing touch with reality and is finding coping mechanisms that look crazy and disheartening to those around her and seem to transport her to parallel universe that has its own rules and makes no sense to those around her. I find it quite confronting to see her battling the loss of memory, autonomy and touch with our shared reality.

We tend to think that memory is about remembering and forgetting but spending a month with my mother is showing me that it’s much more than that. Specialists say that memory is responsible for creating meaning and continuity. You need memory to learn, speak and form relationships. Its loss wreaks havoc in your life, your world falls apart – it becomes fragmented and incoherent. It is not just that mum has forgotten that she is doing the same tasks over and over – it’s that her world is becoming strange and unfamiliar and she has a need to keep it organised and repetition gives her a sense of order and security. If questioned why she is doing what she is doing, she might say that someone has moved the canned vegetables or she cannot locate the salt – these are enough reasons for her to bring a ladder close to the pantry and start organising its contents. Sometimes she will initiate the task without any triggers, she just feels like doing it, it feels like from time to time she has the urge to enter the familiar world of repetition.

What I find interesting about her world is that just like our normal world has the big-bang and creation theories, mum’s new world also seems to have an explanation for how it began. For instance, in the case of her leftover obsession: mum has always had the habit of keeping food leftovers, which was often a reason for arguments in the family, a habit that she cherished and was unable and unwilling to change over time. Now with her dementia, the leftover hoarding behaviour has become almost like a life mission and a reflection of her values and belief system.

“Mum, why don’t you clean up the fridge? There are lots of food there going off.” I asked her the other day when the fridge was so full I could barely close its door.

“I just did it this morning – there is nothing there going off.”

“I saw you organising the fridge, I didn’t see you throwing anything away.”

“That’s because there’s nothing that needs to be thrown away,” she said with a tone that showed she was getting annoyed, like I was missing the obvious.

“But I saw you reheating the beef stew three days in a row and putting it back in the fridge. It can’t be good anymore.”

“Don’t worry, I will eat it tonight for dinner.”

“You will end up with food poising.”

“We aren’t rich – we can’t just throw things away. I’ve always eaten leftovers and never got sick.”

When she starts with the ‘not being rich’ argument, I know it’s a lost battle. She’s right, we aren’t rich but the issue is that she grew up in a farm and had a frugal upbringing and when raising her own family, she was always careful with her shopping budget. Now that her memory is going, she is holding on tightly to old values that have long been ingrained in her brain and are more easily accessible in her memory. I now see signs of mum’s frugality beyond the kitchen – her wardrobe has stacks of old clothes, linen and a number of items that should long have gone to the recycle bin. It may be that dementia strips away layers of pretention to reveal people’s real self and if we look deep into their new world and beyond the absurdity of their freakish behaviour, we might be able to see glimpses of who they really are, even when we think we have lost them.

Although my mum’s actions are not coherent with her objective reality I’m glad she can still argue and find excuses for her odd behaviour. It shows that she still has some cognitive capacity to reason and it gives me hope that her broken memory circuits will still yield many years living with dignity, being able to recognise her family and friends, and being the happy person she naturally is. But while it’s interesting to see my mum reveal her inner world, I also question if I’m clinging to a false hope. I fear that dementia will sooner or later show its true colours and I’ll have to rely on the glimpses I get from observing her world.

I feel that this day is getting closer when mum shows that she has lost the ability to plan or to follow more than basic instructions and is unable to place a restaurant order without asking for help. I’m reminded of that when I have to repeat or rephrase sentences several times because she either can’t hear or doesn’t comprehend what she was told. Or when she starts cooking dinner just after she had agreed to go out for a meal, or changes back to her stay at home clothes just before we are about to go out. I feel this way every time she enters her world and I realise I need her memory more than she does.

As dementia continues to attack mum’s brain and force her to build a new world in a distant land, I struggle. I fear I’ll open her fridge when I come to stay with her next year and it will have become even harder to find the apple. But my greatest fear is that when I open her front door of her apartment she won’t find me and when I look into her world there is not even a glimpse of who she used to be. I hope this will not happen anytime soon.

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