Hi! I’m Grace, I am 15 years old and I have just started volunteering at Bright Shadow and Katy has asked me to write a blog post about my experiences of having a grandparent with dementia.
Although I didn’t understand a lot of what was going on at the time, my mum has recently explained more to me about my granddad, who passed away 4 years ago. I now know that he had lots of little strokes over a number of years, and a more serious stroke when I was quite young in his cerebellum. After this stroke he was diagnosed with vascular dementia which is quite common and is caused by an impaired supply of blood to the brain. My granddad’s wife had died a few years before so he was living on his own at home, but later moved to a care home in Essex. During this time I remember lots of travelling to visit him, my mum spending some weekends away and my parents having to make lots of decisions, although I didn’t fully understand why. Like thousands of other people, my granddad’s deterioration hugely impacted my life. 1 in 14 people over the age of 65 have dementia, a disorder causing memory confusion, personality changes, and impaired reasoning. This can hugely affect the friends and family of a person with dementia and cause a lot of sadness, fear and anger.
As my granddad got worse, talking to him became very confusing! He would often say odd things or seem different than I remembered him being in the past, although I’m glad that he never reached the stage of forgetting who I was. I think the most upsetting memory I have of this was when my younger sister and I made him a card with drawing of his old house and our memories of times we spent with him at the beach and were told by our parents that he might not remember or understand exactly what these pictures were. I also remember having to hold his arm while walking with him and thinking how odd this reversal of roles was. I was used to Granddad holding my hand as we would stroll along the high street or beach, used to him being strong and secure and protective.
My granddad often told us about things he had been doing or activities he had been participating in at the care home, the one I remember the most being when he made lemon curd and we got to try some! Although it was great to hear about these activities, it would have been really lovely to have been able to join in or participate in something with him. Sitting in a bedroom or the care home coffee shop and talking with my granddad for several hours wasn’t easy, and I can imagine how great it would have been to be able to engage with him in a different way, by doing things, especially as his dementia grew steadily worse and long conversations became increasingly difficult. Rather than spending time talking to him, my sister and I would often run around exploring the care home, escaping the difficulty and upset. I wish now that I could turn back time and engage with him in some fun way, making the most of the short time I had left with him.
My granddad had lots of passions and hobbies during his life, including golf, painting and gardening, but as he deteriorated these were almost taken away from him. Sports were no longer possible as his physical health worsened, his hands were no longer steady enough to create the beautiful pictures he used to and moving to a care home meant leaving his beloved garden. However, making lemon curd at his care home gave him new skills and passions, rather than focusing on what he had lost due to dementia. It has been really interesting getting to know about the work Bright Shadow does, focusing on the here and now rather than on the past. Although reminiscing is important and can be lovely, for other family members it can be so upsetting when someone you love dearly can no longer remember all of the memories you have created together, which is why I think focusing on the present is quite a cool idea.
My number one tip to care homes regarding visitors would be to have activities at weekends which families of residents could join in with, especially focusing on children, who struggle to talk to or engage with their grandparents. We lived 2 hours away from my granddad’s care home so could only really visit at weekends, and I don’t remember being involved in any activities there during the 4 years he was in care. Even if the care home or centre is unable to run events with visitors, having dementia-friendly activities available which children can participate in is a great idea.
Thank you so much for reading this post; I hope it has given you a sense of what it is like for grandchildren of people with dementia.
If you are visiting a relative with dementia – whether in their own home or in a care setting – why not try one of our Bright Box activity kits? They are specially designed to help people with dementia and their families enjoy spending time together. You can watch Rachel’s story here about how she and her Mum found new ways to spend time together thanks to a Bright Box. If you are a care home, why not get some for visiting relatives to enjoy when they come to see their loved one?
If you have a story similar to ‘Grandad, Dementia and Me’ and would like to feature on our blog, then please contact us to share it.