85% of people in the South East do not have Lasting Powers of Attorney in place, documents that can be invaluable should you lose capacity.
Sussex has the highest prevalence of dementia in the country, with more than 26,500 people living with dementia. My Grandma was part of this statistic before she died in November 2015.
Her symptoms really started to show a few years prior to her death after she unexpectedly suffered a heart attack in her doctors waiting room.
Very quickly the woman who was a constant source of help and support in our lives began to turn into someone who needed us to take care of her like she had always taken care of us.
My three siblings and I only had one set of grandparents, they were such a wonderful part of our lives that I didn’t even know until I was older that most people had two, we missed out on nothing.
My Grandma, who moved to England in the early 1940’s, lived in Hove and would come to our house three times a week at least. She’d get the bus and the train and often stop off on the way to our house in Broomfield Avenue and buy us a bag of jam doughnuts from Mr B The Bakers. She told us all individually that we were her favourite (it was definitely me though), she turned up at every school play, read our school reports with great interest and would write to her family in Ireland to tell them how fantastic her children and grandchildren were. She was always taking photos of us and having us to stay at her house. She would ply us with sweets and take us to the Odeon to watch films whilst she ‘rested her eyes’. I remember having to twirl in front of shop keepers as she wanted to show me off. Grandma was a constant support to my mum who was busy looking after four children while my dad was at work. We could do no wrong in her eyes and we loved her as fiercely as she loved us.
Then dementia stole her from us.
Grandma quickly lost all concept of time, she thought I was still 14 when I was in my 20’s, she was gobsmacked when I was pregnant because of this! My mum found certain times very hard, she was helping Grandma sort through her clothes when Grandma said ‘’thank you, you’re just like family’’, goodness knows who she thought my mum, her daughter, was. I remember Mum telling me that she wanted to say to Grandma ‘’you look like my mum, you sound like my mum but what have you done with my mum?!’’
My Grandad bore a huge amount of strain looking after my Grandma, even though he was in his late 80’s and had various health problems of his own. We arranged for carers to come and help look after Grandma three times a day, but this wasn’t always enough. We were often called out of work to go and look after her or to help her up after a fall. The day before my older brother’s wedding my Grandad popped out for five minutes, if he ever did this he would leave my Grandma a note telling her he would be back soon. On this occasion despite Grandma having the note she left the house and went wondering, tripped in her garden and was found lying with a broken hip requiring emergency replacement surgery on my brother’s wedding day.
She would say inappropriate things to people leaving us to apologise. Marks and Spencer seemed to be her favourite place to pass comment on strangers, after watching a woman try on a jacket she proclaimed ‘’that would look nice… on somebody else’’!
Having someone in your life with dementia certainly makes you find your sense of humour in dark moments.
The only saving grace was that when my aunt died of Cancer in St Barnabas Hospice, she didn’t have the capacity to grasp the sadness of the situation, that at nearly 90 she had outlived one of her children. What would normally be the greatest pain imaginable didn’t seem to move her. In fact, she was laughing on the way to Worthing Crematorium.
In the final year of her life Grandma was in and out of hospital regularly with various illnesses. My second child was born in late October, I will be forever grateful that she met and held him. Five weeks after his birth on 27th November my husband took a call from my mum to say that Grandma had died. Anyone who has lost an unwell elderly relative will tell you that despite anticipating their death, nothing can prepare you for it. Grandma had thankfully died at home, on her sofa in her conservatory and all her remaining children and grandchildren were able to go and see her and say goodbye.
Her funeral was conducted by Ian Hart Funeral Services. On the day of her funeral Ian told my mum that he had placed my Aunts ashes in my Grandmas’ arms so that they would be buried together. My brothers and husband helped carry my grandmas coffin in to the Church and my sister read a poem.
Seven years on we talk about Grandma all the time, there are so many occasions where we think ‘she would have loved this’ or when we talk about the fun we used to have or laugh at some of her more outrageous moments. We try to remember her how she was and not how she became. She will always be missed by us. We are a normal family who were dealt a brutal blow in caring for someone with dementia.
Dementia simply doesn’t discriminate as to who it affects. Please don’t think that it won’t be you or someone you love and fail to prepare to either look after or be looked after. Being able to make decisions for my Grandma was so helpful at a time where added stress really wasn’t needed. Lasting Powers of Attorney are such a fantastic tool for families like mine where someone has lost capacity. Plan for the worst, hope the best and organise yours sooner rather than later.