Sometimes I lose hope that dementia care will ever change. It often feels as if we’re going backward instead of forward. Then someone such as Wendy Carr inspires me and renews my hope.
When Wendy began commenting on the My Alzheimer’s Story’s Facebook page in 2018, I was struck by her practical wisdom (see one of her quotes below). It was clear from her comments that she worked in a long-term care facility, and that she was keen to create change. I wanted to know more about her, because we need people like Wendy “on the ground,” changing the system and making a difference in the lives of people who live with dementia in care facilities right now.
I connected with Wendy, and asked her to tell me more about herself; here’s what she wrote:
“I was a Registered Nurse (RN), with experience in Theatre, Ophthalmology, Aged Care and Psychiatry. I left work to care for my sister, then my mum, and then, sadly, my husband. They all wanted to die at home, not in a hospital or palliative care setting. We were able to do this with a huge amount of assistance from Little Haven, a not-for-profit we have in my area. It was a privilege for me to care for my family members at home until they died, although it was emotionally very difficult – much more so for me than if they had been in a hospital or care home. For people to die at home is almost taboo here in Australia, so those who wish to go that route have little support. My Welsh background views death differently I think.
Because I was out of paid nursing for so long while caring for my family members, I would have had to retake full training to become registered again. Financially, with three children, that was impossible. So I returned to Aged Care as a Nursing Assistant, and was offered a position in the dementia unit. It is brilliant work, albeit at poor wages. One of the things I most appreciate about being a nursing assistant is that it’s the best place to initiate change. I also love the fact that I work so closely with the residents rather than attending to RN duties that often preclude the building of the vitally important relationships with the people we care for. I could return to university now, but I’m having way too much fun in this assistant role.
I work in a large one-hundred-and-sixty bed, purpose-built facility, which is amazing for a small country town in Queensland, Australia. The facility is set in a beautiful bush environment, and is transitioning from a task-oriented to a person-centred care model. Moving to understand the person’s reality is a hard concept for some carers to grasp. Many still believe any and all behaviours are caused by “the dementia” and cannot be altered or understood, so meds or restraints are still “go to” options when staff members are challenged by the behaviour of some residents. Australia has new laws to address the use of chemical and physical restraints in aged care, which is going to be a huge breakthrough. That said, it’s relatively easy to find loop holes. As with most laws, time will tell. I must admit I am impatient with the slow pace of change.
I have worked at this centre for seven years. It is a not-for-profit, and doing an amazing job. I prefer working night shifts. Although there is traditionally less staff at night, it can be the best time to build close relationships with residents. Nighttime “behaviours” require a complete reset of our own headspace!
In short, person-centred care (or wholistic nursing as I call it), is finally making inroads, and practices are starting to change. I’m old, but I’m so glad this shift is happening because my desire to provide this kind of care is one of the reasons I became a nurse forty years ago.
Your page is so helpful in redefining attitudes especially as you had first-hand experience caring for your mother. You have helped me to realise I’m not completely mad in thinking we can do this better. Together, we can create a more positive experience for people who live with dementia, care workers and family care partners.”
We need more advocates such as Wendy Carr and Joanna LaFleur in dementia care to create new care models from the ground up! Thanks Wendy and Joanna for helping to change the face of dementia care worldwide.