There is no way to sugar coat this topic. Dementia is a horrible and brutal disease that robs too many people of a gentle and graceful exit from life. It is also a difficult disease for family to cope with. When parents stop recognising children, when even the most routine tasks become terrifying and baffling for your loved one and you must watch them suffer the fear and loss.
My husband’s aunt Leona has Lewy Bodies Dementia, a form of dementia that shares symptoms with Parkinsons Disease and Alzheimers. She has hallucinations, difficulty with coordinating movement, and now a great deal of difficulty speaking. For a woman who dedicated her life to caring for others it is very hard to watch her suffer such a lonely and isolating disease. I visit most weekends when I am in Brisbane. I chat, keep it upbeat and try to act like all is normal, but always drive away feeling as if I have picked at an open, never healing wound again and it can leave me feeling so angry and despairing for the rest of the day.
It’s been a five year journey so far, and with each stage we have looked for different ways to engage with her and calm her. Her family and her childhood have featured strongly in the things we talk about that help to reduce her stress. I wanted to make her something beautiful for her room (those nursing home rooms can be very hospital like!) that would be familiar, so I decided to make a memory quilt.
Memory quilts are made for all sorts of reasons, weddings, births, anniversaries, so there was lots of good information on what to do. I gathered black and white photos from the family and included pictures of her on the farm as a young woman, her parents and the new generation of children. The photos can then be printed directly onto white fabric with an inkjet printer. The fabric patches were pulled from leftovers and stashes with a few extra purple (her favourite colour) fabrics purchased and added. I hand quilted with a fine cotton yarn for speed! It isn’t the most precise quilt I have ever made, but it has made a wonderful talking piece for her room, visitors and staff able to ask about the photos. Her vision is deteriorating and the quilt has faded a bit, but it’s still a beautiful handmade piece in her otherwise fairly sterile room.
As her disease has progressed, Leona fidgets and pulls at fabric most of the time, feeling textures, tying knots in and scrunching up sheets and clothes. I started to think about a new quilt – a fidget quilt for something to do with those hands.
Now I spend part of my time in Canberra and I work fulltime. My wonderful mother and her husband have adopted Leona as a friend, and visit her most weeks too. My mum has spent her life working in early childhood, and in the latter half of her career with young disabled children. It has given her wonderful insight into child development, developmental psychology and disability. She was quickly on board with the idea of a fiddle quilt, and after a few discussions about what and how, she undertook to make the quilt! The result is wonderful, as that lifelong crafting skill came together with an understanding of diversional therapy and supporting people with special needs!
The quilt is made from a pillow case and scraps! The idea is a nature scene and features a zip up log (with snake inside), a nest with crocheted bird and a hollow with crocheted mouse (made from The Yarn Bar’s Kilcarra Tweed). The really clever part of the quilt is the leaves and tabs that can be picked at and fiddled with. I’ve seen other fiddle quilts online and they come in a variety of patterns and designs and I would recommend anyone planning to make one really just focus on the recipient, what they are doing with their hands, what they can see and what is familiar. Mum thought to add crinkly plastic in some of the leaves for texture and sound (like baby toys) but she couldn’t find the right plastic!
I know for some dementia suffers, the simple act of holding and unwinding the yarn while their loved one knits can be engaging. Perhaps for those who are still mobile an apron with things in pockets and textures on the apron. I guess you can just try these things and see if you can create something that brings some small joy or comfort each time.
For all the heartache this disease has brought, it has also been a chance for my mum and I to work and share together. Maybe it is also a reminder of how precious family and life are and how fleeting each stage of life can be.
I would love to hear other people’s experience of crafting something for their loved one with dementia or perhaps another mental illness or other debilitating disease. I’m always looking for new ideas.