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.
Epilogue
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
Pingback: Living alone with dementia, by Dr Judy Galvin #DAM2015 Day 27 | Creating life with words: Inspiration, love and truth
A beautiful guest post. Finding this at a time when my friends and I are beginning to have conversations about wanting to continue to live alone even through disease, frailties, loss of friends to death…a gift today. Thank you for the time you put into your blog, and for sharing this important piece of work. ❤
My pleasure, and thanks for your kind words x
Pingback: Vivere da soli ed essere malati di demenza -
Thank you for sharing this xx
Pingback: Advantage and disadvantage of living alone with dementia | Which me am I today?
Pingback: DEMENTIA MEETING # 2015
Pingback: DEMENTIA POLICY Tips # 2015
Pingback: DEMENTIA CHALLENGE # 2015
Pingback: LIVING WELL WITH DEMENTIA # 2015
Pingback: VASCULAR DEMENTIA CONFERENCE # 2015
Pingback: EXPURGATE – DEMENTIA TREMENS (2013) # 2015
Pingback: HEAT TARGETS DEMENTIA Info # 2015
Pingback: DEMENTIA SUMMIT DECEMBER # 2015
Eloisa, thank you. Of course you can use the article if it helps to spread the message. Some of my dearest friends are Italian – Lettesi, from Lettopalena in Abruzzi. Lettopalena was totally destroyed in 1943, building by building. My doctorate,back in the 70s and early 80s traced the migration and resettlement of the community in Australia, via their social networks, between 1949 and 1956 – a remarkable, resilient and delightful community. Sadly some of my Lettesi friends now share the experience of living with dementia and we do keep in touch; and I still receive phone calls at Christmas, Easter, and on my birthday. Very special people. Special friends
Thank you Judy, and Eloisa… spreading the message is indeed, very important.
Hi Kate and Judy,
I’ve just translated and posted the article on my blog. This is the short link: http://wp.me/p4jsA7-lI
I left out the epilogue because it focuses on specific issues pertaining dementia support services in Australia.
A big and grateful hug to you both xoxo
Thanks for sharing this in Italy Eloisa… see you in June perhaps!? xox
Thank you Judy. I am really glad to hear that we share an Italian connection! Personally, I think that special friendships are what make life worth living, especially when life throws you a curveball.
As soon as I publish the translated article on my blog, I’ll link it here for your and Kate’s reference. Thank you again to the both of you. Your words have power to help a lot of people. xoxo
It sounds like a meeting for a few of us would be fun! Preferably in Italy too, I’d say.
I’ll be there for a week in the middle of the year, so if you are anywhere near Milan or Lake Como, do let me know xox
I would love to meet you!!!!
Milan and Lake Como are only a couple of hours drive from my hometown. When you have more details of your trip, please do let me know so we can arrange a get together like the Romans do 🙂
xoxo
Email with dates on its way! Let’s make it happen, and thankfully, you can speak some English xox
I look forward to it! Buon San Valentino xoxo
A hard subject to write about, but the author does a fantastic job.
Indeed… and perhaps you might like to talk to me one day about writing a comedy based around dementia? It would, in fact, be a very useful slant on the experience, as it is is not all like the media makes it out to be! I’ve been trying to write something, based around the Three Stooges… would love some help!
Absolutely! We’re all about teamwork and helping here at the Pile! Reach out to us via the website.. we’d be glad to help.
Will do, and thanks!
I believe this will be my future and the future of many women in my age cohort. I also believe it’s even more critical for a person living alone to plan for elder years than it is for those who are “coupled” or who have family who may potentially care for them, although I see plenty of evidence that potential natural carers are not always able or willing to take on care partnering roles leaving many people in the “living alone” boat.
Kate, on the subject of children of people with early onset dementia, I recently connected with Montreal-based documentary filmmaker Chris Whynn who is producing a film called “Much too Young;” his facebook page is here: https://www.facebook.com/pages/Much-Too-Young/696273550442357; you may want to take a look.
Thanks Susan… and going from being a couple, to alone can happen in a blink, so we should ALL prepare for ageing. I think for example, that our kids should be learning about Advanced Care Directives at the same time at school they learn to vote and drive a motor vehicle… starting these tougher conversations early, helps later on.
I totally agree with you Kate, and as with many things it’s easier said than done. My mom had a legal document outlining her wishes for her care. Nevertheless, my brother and I ended up in court… Sadly, for my mother, I lost.
Let’s hope the next generation does better than ours!
how sad… 😦
Reblogged this on a dog's breakfast.
Hi Kate what a great insight to a person living on their own. This is what I really worry about. Although I have a loving family I know they have commitment bringing up their own children. Should anything happen to my husband I know I would find it difficult to cope alone..I also agree about research. Most exclude people unless they have a carer. Even if it is an exercise programme. We need to fight more around the world for people who live alone with dementia. Reseach for all with dementia is very important. xxxx
Thanks Lesley, and yes, a very important voice and message. Let’s hope more people living alone with dementia speak up as well, which I know is happening, but the more who do, then collectively the stronger the voice. xx
Hi Kate, thank you so much for posting this article. I think it carries a powerful message that deserves to be spread around as much as possible. Including in my country, Italy.
I would like to translate it into Italian and post it on the website of my blog, novilunio.net
Do you know how I can obtain Dr. Judy Galvin’s permission?
A big hug from Italy
Eloisa
I am almost 100% certain she will approve, but I will email her tonight and ask, and add another message here tomorrow or as soon as I get a reply… and thank you. A big hug from Oz x
Excellent! Thank you Kate
I’ve asked Judy to post her reply to your request here but when it comes through, I’ll try and remember to highlight it for you x
Reblogged this on george rook and commented:
People with dementia who live alone… It’s harder for them.
definitely… although I know there are some couples who would dispute that, due to the significant tension having dementia in the household can cause…
As someone also living alone with Alzheimer’s I can only agree wholeheartedly with this wonderful blog. I too am working hard to change the attitude of those who fail to see us.
Great news Wendy, very glad it has been helpful x
Thank you for posting this 😀
My pleasure, a VERY important message x
…..it’s that word…..Dementia…….frightens everybody away…….I am NOT mad…..and I am living with this disease very well thankyou….
…..a very nice blog Kate……….PS…please tell her about my website..
Thanks Tony… and will do. And NO, we are not MAD, it is NOT a mental illness. In fact, I’d prefer it if it was, as it then would be treatable and not terminal…
Dearest JUDY
You are inspirational and very much loved without and with dementia.
Mary xxx
Yes Mary, I totally agree xx
The advocates you seek are continually coming forward, your plight will not be lost among the many relevant issues. Try to trust that we will battle for continued improvement in the delivery system until such time that individual needs are met. Jan Pitts
Thanks Jan, and yes, we are all in it together, supporting each other as much as possible xx
Reblogged this on Fran's World of Wonder.