Voices of dementia patients disappear. Almost all of us have cameras and video recorders, but many of us don’t think it’s important to record our loved ones. Consequently, voices of #dementia patients vanish from our whole culture. A team in England is working to change this trend through the Dementia Diaries project.
The Dementia Diaries project — which originated at Leeds Beckett University in England — collected 1965 audio diaries from participants with early onset dementia. They provided participants with mobile hand sets and invited them to make audio diaries of their experiences. This work was part of a concerted effort to “develop a public record and a personal archive of individuals’ experiences of living with dementia.”
Real Voices of People with Dementia
You can explore the Dementia Diaries project by going to the online archive published by On Our Radar. On Our Radar is a “team of journalists, software architects, digital storytellers and development workers” who use the power of citizens to spark change. Their work solicits opinions from people who live at the margins of society. They publicize this material so policy makers hear more ideas as they make decisions affecting us all.
Before my mother got sick, she was very well-organized. Mom had a methodical approach to solving problems. Influential people relied on her because she was very responsible, yet also gracious. If Old Mom could speak, she’d have lots of ideas to offer leaders who must now address the dementia epidemic.
The Dementia Diaries project did us a tremendous favor by asking #dementia patients to share insights about the disease. I wish I would have done that with my mother long ago. If your loved one still talks, take a minute to ask their opinions about things and record their responses. In the future, you will value what they say even more than you do now.
Caregiver identity is subject to change — especially if you spend years caring for a #dementia patient. Some days I barely recognize myself as the person I was at the start of my mom’s illness. This week I plan to resurrect my “old self”, if only for an hour or two. On Tuesday I’m leading a Girl Scout workshop about voting.
As the Presidential election approaches, I recall how much I used to enjoy researching the candidates and talking about political issues. Maybe it’s me — or maybe it’s the candidates — but today I’m turned off by the constant media coverage. However, I still think it’s important for young people to vote. I want to help them learn how to register. I also want to teach them how to evaluate candidates and understand their platforms.
Back in the old days, I was immersed in civic issues. The declining quality of public schools disturbed me so I got involved in education reform. These days, my caregiver identity casts a shadow over other concerns. I still worry about schools, but now I have a stronger interest in health care and services for the elderly. I want to help the Girl Scout group understand how the Presidential election can influence all these critical matters.
Me Before You
My life was totally different before I became my mother’s #caregiver. I traveled across the country and around the world as I pursued my writing career. Freedom of choice was important to me. The limits of my choices were set by my bank account and my physical stamina. Physical stamina is still an important issue, but for completely different reasons. Most of my daily energy is spent supporting my mom. I lift her, hold her, and help her all day long — and during the wee hours.
Sometimes I miss my old life, but I recognize that being a #caregiver has made me a more compassionate, loving person. When your world is focused on someone else’s well-being, you can’t avoid being changed by the experience.
Every now and then I long to feel some fragment of “old me”: racing to catch a plane or planning an international trip. This week I’ll give myself the treat of one brief hour as “old me” during the #Girl Scout workshop. Can you still remember what it was like to be the “old you”? Is there one thing you could do this week to let your former self out of the box?