Kirsty Elgar explains how she moved in with her Nanny Jean, who had dementia, and helped to care for her.
How was your nan diagnosed?
‘It took a couple of years for Nanny Jean to be officially diagnosed with vascular dementia, as she was so lucid for so long that she refused to be assessed or take a memory test.’
Looking back, were there any signs before that she was in the early stage of dementia?
‘Yes. In July 2012 I moved in with Nanny Jean to help around the house after a series of falls. I had selfish reasons too though – I needed a place to live in order to save up and go travelling! It turned out to be an arrangement that helped us both in ways we weren’t expecting. I’m almost certain that Nanny Jean already knew something was wrong, it’s just hard to hear that you are losing your mental capabilities.’
What happened after diagnosis?
‘I started to do more around the house as it became apparent to me that Nanny Jean required more than just a cohabitant. It never crossed my mind that I shouldn’t do it, despite being told by many people that it wasn’t right for me to give up my life, put my dreams on hold and that she wasn’t my responsibility. For me, it was something that required very little thought.’
How did you tell other people and what was their reaction?
‘Many people didn’t understand that dementia is not as simple as forgetting things, there are many other layers and extra complications. The best way I can describe it to people is through a post I saw on Facebook once which said that dementia isn’t just forgetting your daughter’s birthday, it’s not knowing you have a daughter.’
What were the main challenges you faced and when did they happen?
‘At first it was only small things, such as making sure she was drinking enough and taking her meds. Then the smaller things started adding up, and became more of a full time job. We began to argue a lot too – I’d go to bed fuming at something she’d said and I’d still be holding it against her the morning after.
‘The only way I could cope with this was by splitting Nan into two people, the ‘Nanny Jean’ that loved and cared for me, and the ‘Dementia Nan’ that would throw spiteful remarks my way, and who would soon forget who I was.
‘I started blogging to vent my frustrations and found a great network online of fellow carers, and people with dementia. We supported each other night and day (mostly at night, as there is not currently a 24h helpline, and night time is when most of us let our guilt and frustrations take over). Nanny Jean enjoyed hearing my tales of how internet famous she was becoming, and would revel in guessing how many people had read our latest blog post. I coached her in how to write on a laptop and prompted her to write a few posts herself.
‘Fortunately I had previous experience of working as a carer and this came in useful when Nanny Jean started needing help with bathing. Sharing this experience brought us closer, she was able to open up and no longer felt embarrassed to tell me she had forgotten someone’s name or how the people she interacted with on a daily basis were related to her.
‘Then in 2016 I received a dream job offer – working as a catering assistant at Disneyland Paris! I genuinely felt torn. So much of me had wanted to stay with Nan until the end, but I didn’t know if I would ever get another opportunity like this again so my Mum has stepped up to help with her care. I spoke with Nanny Jean many times during her clearer moments and of course she granted her approval, basically ushering me out of the door.
‘She told me she would miss me, which I knew she meant but I was also aware that, thanks to the dementia, she wouldn’t even remember us living together. The selfish part of me wanted her to remember me, to give me some acknowledgment of our time together. But for the most part I’m glad. She didn’t miss me, or feel sad or alone because she knows no different life than the one she had at any given moment.’
Did any services made a difference?
‘After Nanny Jean’s diagnosis we were put in touch with an Admiral Nurse who genuinely kept me sane during my worst moments. With her support, we eventually moved to be closer to my mum, Nanny Jean’s daughter. This meant I could get a job, have a bit of a social life and still maintain a great relationship with Nan.
Did any products or gadgets helped?
‘Nan tried colouring books (though she struggled a bit with it), she liked knitting and she enjoyed looking at the memory book we created together. She also really liked making the occasion vlog with me – which she allowed me to put on YouTube!’
Any advice you’d like to share?
‘Go with the flow. Whatever is real in that moment is real for that moment. You learn a lot about yourself when you stop worrying about the past or future and learn to live in the now.
‘Take time out. You may not think you need or deserve it but it will make caring so much easier if you spend a little time on yourself
‘Research. Even something as small as searching for #dementia on Twitter found me a whole group of people who could help me understand more about what was happening to Nan. Knowing what to expect will make things a bit easier.
Has your experience of living with someone with dementia changed your perception of it?
‘Yes, I understand now that dementia affects every person differently and can teach you a lot about yourself as well. When I read my blog back I am ashamed of how much I complained, because I had so many wonderful times, laughs and smiles during my time with Nan.’
What lessons have you learnt?
‘I learnt how patient and gentle I can be when I’m not thundering about like a bull in a china shop. I’ve learned that even in the darkest times, when I wanted to run away and never look back, that the smallest gesture such as a cup of tea could bring me right back round. And I learned not to live life so pessimistically. Dementia doesn’t have to be the long goodbye as so many perceive it, for me it was a great introduction to many sides of Nanny Jean that I wouldn’t have learned about otherwise.
‘I also finally learned to believe in myself and my capabilities, and in doing so achieved two life long dreams. I got to work for Disney and I kicked myself up the backside and sat down and wrote a book about caring for Nan, which is something she had always urged me to do through fits of giggles when we were wondering why there was an iron in the fridge.
‘Nan passed away peacefully on March 8 2020. I still miss her every day. But she was always so keen to share her story and that is something I want to continue doing, to help prepare people for what they may one day experience. And most importantly to help people with dementia to live well with it.’