The frustration and isolation of suddenly becoming a 24/7 carer for her husband in an “ad hoc” and “failing” health system prompted long-standing Wellington local politician HELENE RITCHIE to tell her story and call for a Royal Commission inquiry into carer issues.
I am caring for Peter?
I am taking care of Peter
I care for Peter
Caring for me
Taking care of me
Cares for me?
I believe there are lessons to learn from my experience of being a 24/7 carer of my husband Peter during his last four years.
Caring for Peter – who had early onset (diagnosed aged 55) Parkinson’s with Lewy Body dementia – led me to write and publish our story* about the impact of complex chronic and degenerative disease and the frustrations of dealing with a failing and ad hoc health system. This story was written with the need for change and significant improvement constantly in my mind.
You, as nurses, can and do make a significant contribution to ‘caring’, and in future, you are likely to do more so as a scarce commodity in this most rewarding and challenging area of work.
My story exposes the system, and tells it as it was from my experience. The issues are systemic, and they exist daily and sometimes hourly for many, many thousands of other carers. It is about caring, systems and the quite special circumstance of caring for someone with one of the most demanding (for carers) dementias – Lewy Body dementia. Lewy Body dementia (also known as dementia with Lewy bodies) is a pernicious and unpredictable degenerative illness. My story is also about caring for someone with early onset dementia who was not yet an ‘older person’, in a ‘system’ serving a significantly older population.
We know that carers, especially those in their own homes, are the most exploited of all in the health ‘workforce’. Isolated, unpaid, untrained, inadequately supported – many do demanding, complex, and often 24/7 work with insufficient relief.
We know too that those dedicated carers in privately-owned, publicly-funded rest homes and aged care hospitals are minimally trained and paid, and in my experience, often only supported by one on-duty registered nurse at night for very many patients.
When I was asked to write this article for Nursing Review, I thought back to the number of nurses who were involved with us. They were few and far between amongst the perhaps over a hundred people. More nurses were involved with me (and my subsequent acute hospital presentations) than with Peter and me around his very complex medical presentations.
The motivation for me writing our story was to give a voice to isolated and exploited carers and the need for system change.
“The system felt like a mountain with an elusive peak hidden in fog: a mountain of slippery glass with jagged pieces rising out of it which periodically pierced my heart and stomach, and made me bleed and lose my breath, as I tried to find a way through.”
I am a registered psychologist, working in developmental and behavioural psychology, and an experienced local body politician well versed in finding my way through systems and bureaucracies.
But despite my professional background and experience, thrust as I was into being a ‘carer’ without warning or sufficient support, this new role was nearly a role too hard.
Our story not only exposes a deficient system, it also shows up deficient practice evident within it, and I hope it will provoke questioning, discussion, and debate for people working in or studying to join the ‘helping’ professions. As nurses, you must work within the system, until/unless it changes. You can be advocates for change, from within, but that in itself often presents its own challenges.
“The meaning of dementia is unknown unless you experience it.”
It is, however, very important that nurses, and those in training, who might otherwise not be able to, do try to understand the experience of the home spouse, daughter or son carer. It is also important to try to understand, as closely as is possible, the experience of dementia.
The need to support carers and the ‘cared-for’ with quality treatment and support at home will be even greater in future.
You as nurses play, and will play, a vital role.
Carers New Zealand tell us that the number of carers in New Zealand (2006 census) are at least 420,000 (not all 24/7). According to Alzheimers New Zealand, the number of people with dementia will grow from 48,182 in 2011 to a predicted 148,359 by 2050.
There is no doubt that in future this is a growing part of our health and home health/community support (ageing in place) ‘system’.
Viable system solutions are complex. Perpetual haphazard tinkering offers little solace or solution but invariably compounds the challenges. What is needed above all else is a whole-of-system approach that is integrated, collaborative, and innovative to create a viable system(s) for the future.
There needs to be a nationwide discourse and action which would give you, as nurses, and the people of Aotearoa New Zealand the ability to contribute suggestions, innovation and solutions.
My hope is that as a result of our story, and a greater voice and awareness of carer issues will see a Royal Commission set up by Parliament with a ‘bi-partisan’ commitment to take action.
This is the only real mechanism our nation has to seek people’s experiences and views and to address the complex combination of clinical, professional, structural, political, and societal issues by recommending actions to achieve lasting, cohesive, and innovative system solutions.
Nurses have much to contribute to that.
In the end society, a country, and a government, is best judged by how it looks after its weakest and most vulnerable citizens.
*Helene Ritchie’s book Peter and Me: When a Love Story Becomes a Carer’s Anguish was published last year. A registered psychologist and former deputy mayor of Wellington, Ritchie is an elected member of the Capital & Coast District Health Board and the capital’s longest serving city councillor.