Guest Post: Dementia and Me

Wednesday, 3 August 2016


I have to start by being honest/warning readers - blogging is an absolutely alien concept to me, but when presented with the opportunity to guest post on my best friend’s blog about something close to my heart, I jumped at the chance, writing until midnight when I had to be up for work at 6 (poor move, Soph). Without further ado, here is me dipping my toe into the terrifying world of blogging…

From an early age, I was fascinated by my grandmother’s stories of her life before she came to the UK. She would tell me how her and her sister stuck together throughout the process of being moved from Poland to Africa to Manchester due to the war. My grandma and her sister were basically pretty bad ass together, and such a solid unit. Fast forward around 40 years, many kids and grandkids later, and my grandma and great aunt had well settled into the UK, within a strong Polish community. 

There is no set point as to when my great aunt became ill, nor my grandma. There is no specific day that you can pinpoint the change from forgetting basic things in the weekly shop to becoming an Alzheimer’s sufferer. You simply display symptoms over a long period of time until you consult a doctor for further tests. The only way I can think to describe it is that it absolutely creeps up on you, and without observant family members, you could happily go along thinking nothing is wrong. 

Of the two sisters, my great aunt became ill first. Admittedly, we didn’t see each other much, aside from at birthdays and other family occasions, and I was still fairly young when she became ill, so I don’t know all the details. I just know that at every family occasion I saw her at for a few years, she would look different from how I last remembered her. It’s pretty much ingrained in Polish culture to overfeed women (extra padding for the winter, right? that’s what me and mum say to excuse our extra pounds anyway), so it’s not uncommon to see ladies looking healthily plump. Similarly, ladies tend to take pride in their appearance (which I’ve always loved - my grandma and great aunt were no strangers to a good co-ord and a red lip) - these aspects of appearance slipped the more ill she became. I’m not sat here slating her just because she stopped wearing her favourite lippy, but she had clearly begun to have a hard time looking after herself (something she’d always managed so well), and god bless my great uncle for trying to keep her well made up, but I don’t know how much of an MUA he classes himself as. 

Fashion comments and poor MUA jokes aside, the point is that the things we take for granted as being routine all throughout our lives become so difficult when you add dementia into the mix. Without constant care, it’s hard to ensure your loved ones can actually do the most basic of things - wash their clothes, wash their hair, feed themselves. 

My great aunt eventually reached the point where the best option for her health and wellbeing was for her to move into a home for the elderly. Due to English being her second language, she has had to move into a dementia specialised, Polish speaking home. She’s been living there for a few years now, and with 24/7/365 care, medication and daily visits from my great uncle that make her face light up (talk about The Notebook in real life, am I right?!), she’s well in herself. As a degenerative illness, there’s no getting better, there is just the option of keeping her with us for as long as possible, and as herself as possible. She has a daily routine now, and as any change in this routine, or scenery, may completely upset her, she has been unable to attend family functions since moving to the home, but as upsetting as it is, we all know it’s for the best. 

As I said, my great aunt and grandma were a close pair. I suppose it’s some sick kind of irony that Alzheimer’s also wants to celebrate that and give them one more thing in common. Again, there is no specific point that we noticed my grandma becoming ill, but we at least saw some warning signs echoed from her sister onto herself. My grandma used to be able to tell me what she’d done for the past week, and what she intended to do for the next week every time I saw her. She’d go to church, see her best friend, go shopping. Now, her calendar revolves around medical appointments, bi-weekly visits to a day centre and visits from my mum, aunt and cousin. 

Though dementia displays obvious symptoms, in that my grandma doesn’t know what day, month or year it is without a good few reminders, I think it’s the more subtle side effects that people forget about. It’s hard to hold a conversation with my grandma now, when we used to chatter for hours. My grandma used to be able to happily sit and watch kids films with me, and engage with me, talking about how pretty Ariel’s hair was, or how nice Eric looked in that white shirt (a woman after my own heart, truly) now she sits, looking lost on the sofa. 

At the risk of sounding selfish, it’s these aspects of the illness that really break my heart. I’ve been watching for the past few years as my grandma has slowly slipped away from being the person we’ve known (and loved her for). To see two matriarchs of my family, with possibly the richest, most interesting backstories I know forget parts of their history, and what makes them them has been absolutely devastating. Most people think dementia is just forgetting what happened the other year, or someone’s name, but it is so much more than that. Dementia strips the self from the body it lives in. It is not just the memories, but the person behind them that you lose. 

Of course, with the history, and ongoing story of my great aunt and grandma’s illness, there is an underlying fear for the next generation, and the one after that. When me and my mum forget the most silly things, whether it’s me forgetting what I came into a room for, or my mum forgetting what she has in the freezer for tea, it’s almost as if there is a looming cloud, the elephant in the room - are we going to end up the way grandma has? After witnessing the illness so close, though we may recognise signs sooner, it certainly makes you more anxious. 

Even with the possible risk of me and my brother having to support my mum, if, God forbid, history repeats itself, and again, the risk of inheriting the illness myself, I remain hopeful that with research into the illness, there is still hope. I’ve been toying with alternate endings for this post for longer than I’ve actually sat writing it, so let me just wrap it up by saying : for research, we need fundraising, and for change, we need awareness. This post has simply been an explanation of my experience of dementia, for further information, I highly recommend visiting the Alzheimer’s Society UK website, and while you’re there, pop in a few quid to their Donate page. 

Love, S x

Written by Sophie Nesbitt
@sophienesbitt

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