Today I am publishing a guest blog, written by a woman I am honoured to know, and whom I often feel in awe of. Judy has given me permission to share her story of living alone with dementia of the Alzheimer’s type. My blog title uses the word dementia, as her story applies to anyone living alone with any type of dementia. There are a significant number of people with dementia living alone, and as she rightly says, currently they do not have much of a voice. The other group with no voice, are the children of people with younger onset dementia, like my sons. Hopefully, the advocacy of many around the world will start to change this, and I hope this story is shared by many. Thank you Judy, for your support, friendship, and for the privilege of allowing me to share your story here. We work together on the Alzheimer’s Australia Dementia Advisory Committee. When we are well, many of us have loved or still love living alone, but when illness or a crisis sneaks into our world, it is not always quite so awesome!
For Those without a Voice – Living Alone with Alzheimer’s
“There is a pathway of loss that begins with the words – “You do have Alzheimer’s.” Suddenly your world changes and you walk away wondering who you are now, alone in the realisation that the pathway you now walk will diminish ahead of you, the substance, the meaning of your life, recede with it. And who is there to tell? You make your way home, alone.
But you find diagnosis to be a passport to a new life, a new identity. I am no longer Dr Judith Galvin -“I am Judy, and I have Alzheimer’s” is the nametag you wear now. Fewer people will want to know you. Old friends will forget you. You will soon become redundant. This is who you are now – a person left wondering, fumbling for words, losing identity, without a shared future.
Yet, because you still can, you embrace this new identity, create a new social network. Like an immigrant you find contacts among like-minded people, people like yourself, people with Alzheimer’s, their Carers and the services – the Alzheimer’s community. You read books they have written and follow their websites. You do the “Living with Memory Loss” course, attend information seminars, Café Connect outings, and visit the library at the Memory Loss Centre.
But none of the people you ever see there are single. Sitting alone among the coupled presence of others, you keep asking yourself – “Where are my fellow travellers? Where are the others who live alone with dementia?” They are notable by their absence – outsiders, abandoned, without a voice, without an advocate – “missing in action”.
So you lobby on behalf of “those without a voice”. As a member of the Dementia Advisory Committee, you write submissions protesting their absence and their consequent neglect, not only from the above programs, but from dementia research, national data, planning documents and newly-emergent services. All had failed to acknowledge their existence and their obvious need to be monitored and supported, in a different way.
Through incidental, informal contacts, and membership of the dementia community, time has revealed the life situations of those both with, and without a Carer. You have witnessed the depth of dedication, commitment and contribution of Carers; and, in equal measure, the frightening dilemma created by their absence for those who live alone.
Though I live alone and I do have Alzheimer’s, I am fortunate that, for me, diagnosis came early, medication was effective, and the disease progressed slowly. There was time to plan ahead, develop strategies to function better, select activities I could manage, and maintain close relationships. On St Patrick’s Day I’ll celebrate 10 years with Alzheimer’s, my ever-blundering companion.
I am thankful for the time I’ve had – to reflect on memories that confirm who I am, to value and enjoy what things I could still do and to plan my future. I hope that my considered, written advice, will guide decisions to add quality of life as functioning deteriorates. Meanwhile I am grateful that in my early life I had the chance to give expression to my full potential. That experience enabled me to be an advocate for others who live alone with their dementia.
But time is a rare blessing. For the majority of those who do live alone, time is stolen quickly, residential care, within 3 years; life expectancy 8-10 years. That was my diagnosis.
Loss often proceeds too quickly, overtaking capabilities till one is left helpless, without voice, without function, stripped of all memory, intellect, and personality. Robbed of autonomy, one struggles to retain, to give expression to some semblance of one’s identity, one’s past, and of the person who remains. For those without a voice and without an advocate – those who live alone, irrespective of the rate of change, the easy solution has been, and remains, institutionalisation, earlier than is necessary.
Only in a “knowing relation” can a person, unable to articulate need, have that need identified and, through timely action, have the need met, so preventing a breakdown of care that precipitates premature residential placement. In a support role the worker could have the power to engage with the person living alone, to communicate and connect with them. Connection is spending time knowing who the person is – their personal story and how best to reach them; then sufficient time to observe, anticipate and act.
Knowing the form of the ever-changing landscape of a person’s real, though diminishing potential can enable the forging of a pathway towards a more meaningful existence.
People who live alone have been systematically excluded from a national dialogue that begins with research providing data for planning the appropriate “at home” support. The consequence has been breakdown in the pathway of care resulting in premature institutionalisation, a costly mistake, in human and financial terms. As an advocate my goal has been inclusion through structural change.
While Alzheimer’s Australia is a Carers Support Group, advocacy has been extended to those who live alone. A Discussion Paper led to a Budget Submission (2014) for 40 positions, nationally. It was unsuccessful. Recommendations from Advisory Committees supported research now being conducted by Professor Brodaty and Dr Jennifer Fletcher, at the Co-operative Centre for Dementia Research.
The research will compare the pathways of care for people who live alone, and those with resident Carer, a first for Australia. The challenge will be to access “real” data from “those without a voice”, data that is representative, reliable and valid.
Aged Care Reforms, endorsed by both parties, impose major barriers. How on earth does a person living alone with dementia access “Consumer Directed Care” at home? And destroying the distinction between hostel and nursing home will have gravely detrimental impacts.
It will condemn the younger, physically more able – those with Younger Onset Alzheimer’s and those living alone and being prematurely institutionalised, to “high care” driven management. The risk is loss of the more enlightened programs provided in lieu of psychotropic drugs for “behaviour” control; and loss of the kind of environmental design that is more homely, more enabling and person- centred.
For those who live alone with dementia, structural, inclusive change has barely begun. There is a “Buddy Program” for Bribie Island – like a diamond in a coalmine! It is one initiative of Alzheimer’s Australia’s Dementia Friendly Communities Project and relates specifically to the people living alone with dementia in that community.
While winding down my own involvement, I feel encouraged by the response and spoken commitment from a number of gatekeepers – leaders in aged care, to be advocates for change. When relaxed, listening to music, I am reassured by Leonard Cohen’s song:
There’s a crack, a crack in everything…. That’s how the light gets in….That’s how the light gets in.”
Author: Dr Judith Galvin © 2015
Member of Alzheimer’s Australia Dementia Advisory Committee