I was surprised at the amount of attention one of my recent tweets received. It was about the positive impact of a reminiscence activity on my mum.
Since mum has been home I have been painfully struck by the impact of vascular dementia on her memory. I thought I was prepared for the time when she no longer remembered me. What I didn’t expect is that her memories would come and go.
Sometimes she doesn’t know how I am related to her, thinking at times I am the paid help. Sometimes she isn’t aware she ever married. To help out, I have started referring to my father as ‘Haydn, your husband,’ but that backfired when she was surprised that I didn’t call him dad. What has been most distressing for her is when she can’t remember her parents and has no sense of where she came from. Usually this happens in the mornings. “I don’t know who I am anymore,” she told me yesterday.
Losing Her Identity
Another time. “I don’t know how I got here. I never questioned it because I thought this is a lovely life and I didn’t want to go back to what was home.” She looks furtively for clues in her bedside drawers. “And nobody enquired about me. It’s not that I want to go now, but I can’t go on living like this. I don’t know what home is. I’ve been wondering where I come from…”
More often it is less dramatic. She has simply lost the last thirty or so years. To fill in the void that is her life, I’ve started talking her through the objects in a gift I created for both parents. It is an old printer’s tray in which I have placed images and objects that represent significant moments in their fifty years of marriage. For their first date to see the classic film, “Gone with the Wind”, the compartment contains an image from the film surrounded by red cinema curtains, with two heads close together in the front row. I enjoy recounting how they argued on this first date, which was very nearly their last.
When I talked her through each compartment (see below) in the box recently, she said, “You brought him back to me.” At this we both cried and then hugged.
Creating a Book About Mum’s Life
Bewildered at her loss of memories, last week Mum said, “I feel dead inside.” Yet when I got her to help me arrange photos for a book about her life, I was surprised by the transformation. Once started, she could recognise the people in the pictures, even if she was hazy about exactly who the people were. As we scanned photos and examined them enlarged on the screen, she became animated and engaged, clearly in touch with her past again. I was so encouraged about this way of helping her recover her sense of self, I reported the success in a tweet. From the response, it is clear lots of people have done similar things for their loved ones.
Zooming In on the Past
Mum’s early photos are currently arranged haphazardly in several albums. They jump around between the decades. Some of the earlier photos are small and faded. By scanning them in, adjusting the quality and enlarging them we can see details we didn’t see before, and we can dispense with the magnifying glass. Arranging them chronologically helps create a clear sense of her life story. One day I will no longer be my mum’s main carer, and I am keen to pass on resources and tips to help future carers. The book will form an important part of this package.
I am sure there are great materials around to help people create life books for their loved ones living with dementia, but after a quick online search I couldn’t find them. Here are a few references and tips that I did find.
- The Life Story Network provides tips and a simple facility to help you record your own story or that of a loved one.
- Dementia UK have developed a helpful Life Story template (in Word) and provide guidance for using this (in a PDF).
- Here is another guide to help make a Memory Book.
- Unforgettable sells two products to help families create a life story book. 1) My Life Story Book 2) Talking Photo Album.
Also, in response to my tweet I learned about new software to help people and carers record life histories. It’s a “social media style app to help people create a profile for an older relative, add photos to a chronological timeline and to tell the story behind them in words,” explains creator Owen McNair. “It is different to Facebook in that you can backdate posts to make the timeline truly chronological.”
I like the look of this and will explore it further. But in the first instance I want to create a physical book. Something mum can hold and look at without anybody’s help.