January 4, 2020

Let’s talk about Dementia

Dementia is something I’ve wanted to touch on here for a while but it is a topic that is incredibly raw and quite difficult to put into words, especially when it affects a loved one in your family. 1 in 6 people over the age of 80 have dementia – although you can develop dementia at any age, it tends to be most common in the elderly. When my grandma first got diagnosed with vascular dementia, I searched for articles to find out more about the disease and how best to support those living with dementia but also those caring for someone with the disease. Whilst there is a wealth of medical information available, there seemed to be very little out there about people’s personal experiences, which was what I was most interested in. You can learn so much from other people and their experiences – the power of words can bring light on the darker days, give reassurance, support and ultimately more awareness about the disease and the effect it has not only on the person diagnosed but also those who surround them.

My first real understanding of dementia came through dribs and drabs of conversation I picked up from my mum relaying stories about her own maternal grandma. Some were happy memories of her childhood, being given tuppence for ice-cream, playing outside in the garden and family holidays together. Others were memories of those final years when her grandma lost those treasured memories and was entirely dependent on the care she received in a home and was unsure of even her closest family members. I was still very young when my great-grandmother passed away and in hindsight I think much was edited about her final years to protect me from the reality of the disease.

For me, my grandparents were the pillars of my childhood. They play such an enormous part in shaping you as a person, teaching you right from wrong and personally, were figures of great encouragement and inspiration. At the age of 10, I was invited to an interview for a local secondary school and was asked who my inspiration was. I imagine the headmaster expected me to say a pop icon or Blue Peter presenter (I was a big fan back in the day), but the first answer that sprang to my mind was my granddad. In a way, grandparents are figures of wisdom, they have so much more life experience and for me, always had my best interests at heart and made me believe that if I put my mind to something, then really I could achieve anything.

Growing up, you always expect your grandparents to be there, to be those consistent figures of kindness and support and to never age. It’s not until you become older that you realise that the aging process is inevitable, that it’s just the natural way of life.

My maternal grandmother has always been someone with the biggest heart. Her unconditional love for my granddad (mentioned above) and vice versa is something that I can only aspire to have when I am their age. Their love story is something that could be the basis of a Nicholas Sparks film, falling in love when they were in their late teens, eloping and building a life together out of essentially nothing. Neither of their parents supported the marriage but this year they will celebrate 60 years together – an actual lifetime.

If I only had a few words to describe my grandma, I would say she is someone who is feisty but also incredibly sensitive and kind. A beautiful soul, fond of szudukos and utterly invested in her grandchildren. Her passion for Christmas (I genuinely do not think I will ever find anyone else who gets such joy out of giving people presents at Christmas), cooking Sunday roasts, hitting the shops (possibly Marks and Spencer’s biggest fan) and pottering in the garden, are things I will always remember her by. Along with the time she fell in the pond, which still brings a smile to my face as I type this now. Even with dementia, her love for shopping has not dwindled – in fact, their house is currently turning into a florist. They like to go out each day and make an (almost) daily trip to the local garden center – my grandma adores plants but can not remember one day from the next so can’t recall which plants she has already bought. My granddad not wanting to upset her, treats her to the plants that take her fancy and as a result, their kitchen is starting to resemble an urban jungle!

Now that I live in Scotland, I realistically only see my grandma once a month and so the gradual decline is all the more apparent when I go back to my hometown. To see someone you love who was such a strong, independent lady unable to place who you are and recall those lifelong memories is really quite heart-breaking. There is so much documentation out there about dementia but very little that really prepares you for what it is like to no longer be recognised by someone you love and have such a strong connection with. I’m not sure there is anything that can really prepare you for that. As a granddaughter it’s something that is hard to see but as a daughter, sister or husband this must especially be the case. It can be difficult to separate that person that you’ve known your entire life from the person who has this disease. They become entangled and intertwined but it’s important to remember, and something I try and tell my mum often, that it’s not really her but the disease. A part of her has gone and it’s really those memories you have to cling onto.

Even harder than seeing the effect of the disease on my grandma, is the affect it has on my granddad who is the primary carer and her husband. The love he has for my grandma runs so deeply and he does everything in his power to make her as comfortable and as happy as he can. Spending a lifetime with someone and seeing them change against their will must be one of the hardest things you could ever go through. He also sees everything, the low moods, the acting out – everything that goes on behind closed doors, he bears the brunt of. Last time I saw him, he was telling me about their daily shopping trips – shopping has and I’m sure will always be, his most hated activity but it’s one of those things that still brings so much happiness to my grandma that he does it every day without any hesitation. I honestly think he is one of the most selfless, most loving individuals and I am so grateful that he’s been there throughout my life to push me in the right direction and to help form who I am today.

I’m just reading back through this now and I hope it doesn’t read as something full of doom and gloom. I wanted to capture what it means to have a grandparent who is now living with dementia, especially a few years down the line. As brilliant as Nicholas Spark’s The Notebook is, I don’t think it truly reflects all sides of dementia or the true effect this has on a family. At this point, it’s important to stress that there are still flickers of my old grandma. These moments are rare now but occasionally you catch glimpses of that strong, sensitive soul that’s still there, just buried deep. Although her short term memory is rarely there, my grandma can still recall with perfect recollection the route in the car from Brighton to London without any prompts whatsoever as well as the street names and where you could find the post office in Brighton town centre (in all honesty it is probably long gone by now but we don’t tell her that). Take her back 40 years and she can tell you the price of their first house, birthdays of her grandparents and names of distant cousins four times removed as well as her first love Mick, who she fell head over heels for (quite literally as she fell down the stairs the first time they met) and who she still loves today.

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