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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Forgotten memories, unforgettable lines

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I first feared that mum’s memory lapses were more than old age forgetfulness in a brief moment of vanity last summer. I was staring at the tall, vertical mirror on her bedroom wall, pushing up my cheek muscles to hide the smile lines around my lips. Mum was watching me and said, “You are too young for Botox.” I chuckled. I wasn’t considering cosmetic intervention but at 43 and in Brazil, the land of Botox, I didn’t think that I was too young for one.

“How old do you have to be for Botox injections?” I asked giggling.

“40” she replied and I could feel deep worry wrinkles cutting into my forehead. Suddenly it wasn’t funny anymore.

“And how old do you think I am, mum?”

“Aren’t you 34?” she replied dropping her gaze.

“Mum, this makes me younger than my younger brothers.”

“Are you…36?” She asked hesitantly and I realised she had lost track of the age of her offspring.

Mum’s confusions didn’t seem normal so I took her to see a neurologist, who, after examining and asking her a few questions, explained that it wasn’t uncommon for elderly people that don’t live active lives to become very forgetful. Since my father passed away, almost ten years ago, mum has become increasingly insular, so, I put her mental confusion down to her sedentary lifestyle and lack of social life.

Despite mum’s reluctance, my siblings and I tried to help her become more active. We insisted that she used her hearing aid so she could participate more in conversations, hired a physiotherapist to improve her muscle strength and mobility and took her on outings. But unfortunately, her memory continued to deteriorate. Medical exams were scheduled and the results weren’t good. This summer when I came to visit I asked her again how old I was. She had aged me a little. According to her, I’m now 40. The inaccuracy didn’t surprise me. This time I knew that her mental confusion was revealing more than her way of living. Mum is losing her sense of time – she has been diagnosed with vascular dementia.

Vascular dementia is caused by problems of blood circulation in the brain, which in mum’s case was triggered by mini-strokes in the brain (transient ischaemic attack). These strokes cause damage in the area associated with learning, memory and language. The prognosis isn’t great. If the degeneration continues to occur at a rapid rate, the life expectancy is about 10 years. As the disease progresses she will become more forgetful, frail and, confused.

It hurts to see mum not being mum, not remembering to do the things she enjoyed to do for herself and for us. I wasn’t prepared to face her old age like this and I’m still learning to accept that our roles have been reversed and that our lives and our relationship are never going to be the same.  I miss the smell of her chocolate cake but now if I want to bring that memory to life I have to do the baking myself. At the moment it’s the small things but I sense that mum is gradually being dragged to a different dimension, a world where time doesn’t matter, a planet without a past or future. And she will increasingly spend more time at this place, often confused, frustrated and alone.

Because of the nature of the disease, I don’t know if she will ever realise that she has embarked on this journey and I wonder if she will be scared. Because I am. I’m pretty frightened to see my mum slowly being transformed into a different person. I’m scared because I don’t know how I’m supposed to follow her into her new world. I’m worried because I feel hopeless. I want to rescue mum from there but the wrinkles in my forehead are getting deeper and longer as I know there is only so much I can do. I can help slow the process but I cannot stop it.

I’m starting to unknown my own mother. Mum used to be predictable, consistent and calm but her behaviour is changing and she is losing these precious parts of her character. Now, one minute she agrees to go out with me but by the time I get changed, she’s changed her mind.  Or forgot she had agreed to anything.  Mum’s confidence is being whittled away, along with her memories. She is often responding to questions with other questions, uncertain of her own words, of facts or figures. “Mum, how much did you spend at the bakery today?” I’ll ask and she will reply “Didn’t I spend nine bucks?”

I look forward to coming home every summer but I’m starting to stress about my knock at the door being answered by a different person, by a new version of mum and that maybe that person won’t know me, or my story and the essence of who I am. I hope that day never comes, but if it does, I’ll offer her a smile because she taught me that a smile and kind words can heal a broken day. And I’ll come in and look at the tall, vertical mirror on her bedroom wall and will forever cherish the smile lines I gained because of her.