Ruby’s grandad, George, was diagnosed with mixed dementia two years ago. Ruby writes about her close relationship with her grandparents, how the lockdown has affected them, and about how Ruby copes with her emotions.
I’ve always been really close to my grandparents. We live about ten minutes away from their house so we would see them regularly.
Growing up, my dad worked in London (about an hour’s drive away), so my sister and I would be with my grandparents every day after school and during the school holidays.
Before coronavirus, my dad would drive my nanna to do their shopping twice a week. My aunt would go on a Thursday afternoon to sit with my grandad whilst my nanna went out, and I would visit at the weekends.
But since the lockdown, none of this has been possible. This has been particularly hard on Nanna and Grandad.
Grandad’s dementia diagnosis
My grandad, George, was diagnosed with mixed dementia two years ago, aged 91.
We’d noticed symptoms of dementia for about two years prior to his diagnosis. My grandad is very stubborn and it was difficult to get him to the doctors to get him a referral to have an assessment.
When I was younger, Grandad would tell me stories about growing up in Hackney during the 1930s and 1940s. His family were very poor but unaware because everyone around him was in the same situation.
'Grandad used to speak about what a treat it was when his mother would come home with jellied eels for tea.'
Everyone in my family is repulsed by jellied eels, but to Grandad there is nothing better.
He would repeat this story several times over and I would listen enraptured every time, with an ache in my stomach as I knew one day this memory would be gone.
A while ago, my dad discovered our local supermarket was selling jellied eels. Every time my grandad heard he was having jellied eels for his dinner he would gasp and say what a treat it was. Now, whenever I’m at the supermarket I check to see if there are any jellied eels, and if there are, I pick some up.
I wonder if he will be transported back to his childhood in Hackney. I hope that even if he can’t remember those times anymore, he is filled with the same happiness he would have been then. I would buy him all the jellied eels in the world if it gives him that feeling.
The impact of dementia
But over the last two years, my kind, funny, spectacularly stubborn grandad has slowly faded away, as mixed dementia spreads through his brain, erasing his memories. He is frail and has little idea of what is going on around him.
'My nanna is fighting every day, battling with someone whose actions and questions are no longer rational or logical.'
I’ve never felt so hopeless. Most nights my thoughts spiral, questioning when I first noticed he was forgetting things; why didn’t I spend that extra five minutes sitting with him; what was so important that I couldn’t go and see my grandparents?
I feel weighed down by guilt – guilt that I didn’t enjoy all the times I could have with my grandparents before my grandad became unwell, and guilt that I can’t do more to help.
I’m also grieving. I’m mourning someone who is physically here but is mentally fading from us. I have always been very close to my grandparents, my happiest times spent in their company. I feel grief for what we once had and who we all once were.
Life since lockdown
My nanna is finding the lockdown difficult. My grandad doesn’t understand what’s going on and doesn't understand why we can’t come and see him anymore.
For my nanna, going shopping and going out dancing on a Thursday afternoon were a break and a time where she could de-stress and see her friends. But now she’s at home all the time and it can be hard for her.
Grandad’s condition has declined during the lockdown.
We regularly Skype as Nanna is very tech-savvy and we have a weekly family quiz. We also set her up a Netflix account which she likes, and bought her some new books to read.
The doctor has referred Grandad to an intermediate care team and they’ve assessed him. Sadly, due to the virus, all the things that they want to do to help him and my nanna can't be done right now.
They’ve told my nanna that a day programme, respite care and three hours of a carer coming to give her a break won't be able to happen until the 1 July.
We are so grateful for any support that can be offered but it’s incredibly difficult for her and there are days that can be very challenging with my grandad.
Writing my way through
On the nights I find my thoughts spiralling, it helps me to write my feelings down.
'Putting pen to paper helps me to understand exactly what I’m feeling.'
Having a loved one with dementia can feel so lonely and scary sometimes, but writing can act as a release. I would encourage anyone who is struggling to try and write what’s on their minds.
I’ve written a poem for my grandad, called ‘For George’. I wanted to express how he is more than just one person with dementia; he is a grandad, a dad, a husband, a son, a brother. He is George and he has lived a life. I hope you enjoy it.
by Ruby Hotten
I am your sister or your daughter, you can’t remember which
But then I call you Grandad and suddenly you switch
My heart leaps- you’ve heard my silent plea
You’ve recognised it’s me
I know you’ve found me somewhere in your mind
And though you cannot place me, the feelings there are kind
You ask how I am and am I taking care
So reminiscent of who you were it’s difficult to bear
Then you are silent, even those words were a strain
So as I sit and watch you, I hope you’re not in pain
That the sadness we all feel
Is not part of your ordeal
I hope that when you close your eyes and fiddle with your hair
Wherever your mind takes you is somewhere where we’re there
As I watch I promise to myself that I will remember who we once had
I will remember you as my kind, funny, stubborn Grandad.
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