Hogeweyk
Type
Article
Category
aged care

Dementia is not a democracy: looking for freedom in an old folks’ home

‘Who am I?’ Betsy is calling from across the corridor. Sometimes it is ‘Where am I?’ The plaints come together, along with worried queries about how she will pay for lunch.

When the nursing staff ask her what she wants, Betsy has an answer: ‘I want to go home’. ‘But this is your home,’ is the reply from nurses and carers.

Sadly, no it isn’t. An old folks’ home, aka an aged care facility, is only ‘home’ by default. People living in them are all too often missing their real home life. Sometimes a wishful plea to go home is a wistful form of defiance.

You are probably now feeling the icy fingers down your spine that accompanies the thought of dementia. We know there is an increasing likelihood we will experience it as we live longer. Even so, it’s curious how sharp the fear of dementia is, compared with that of death. An experienced nurse tells me of seeing several people at the end of their lives. All of them said ‘it was time’ for death. This calm response contrasts with the dread associated with dementia.

That needs explaining. On the face of it, the prospect should be less dreadful, given life at least remains. But what is lost is identity. Why is the thought of losing this more frightening than the thought of losing life itself?

*

When people try to leave here, it isn’t at random. I was sitting at one end of the dining room as a member of staff called out that a certain resident was ‘trying to get out of the building’.

Although it isn’t unreasonable that the staff call out such things, I found it all disturbing, as I do the apparent quiescence of the residents.

Like Betsy, many of us often want to go home. This desire isn’t just sentimental, and is more likely to arise during the person’s former working hours. Say, eight am to five pm. At five pm, they see the staff numbers thinning out and the lighting dimming. From a long experience, this is associated with going home.

It is tempting to see this as a liberating impulse, but I know about what happens if you follow this impulse. In late 2016, I spent days in a state of delirium at Royal Melbourne Hospital, with all sorts of adventures going on in my head, my identity – like my location – highly doubtful. I thought the nurses were trying to imprison me, so I tried to escape from the hospital building. Had I succeeded, I would probably have blundered into traffic, endangering those around me and myself.

Delirium is not a democracy. Neither is dementia. Nor can it be, at least not at its core. People who misread reality should not make decisions. Which is not to say nothing can be done. We can make the surrounding society more democratic. We can make the surrounding territory less hostile. We can provide better funding. For instance: do hospitals really have to be built next to traffic?

*

Shortly after my arrival at my current residential care unit, it was Remembrance Day. As an internationalist, the pending event made me nervous. Usually, dodging awkward occasions is easy if you have other things to do, but I had none. As I was so new, I felt I couldn’t afford to antagonise people. When everyone stood up, I would be exposed if I didn’t join in, so I decided I would wing it and stand. The event started, a group stood up to the strains of God Save the Queen. Then the dulcet tones of Advance Australia Fair. Here was the existential moment. I waited a moment and nobody stood up! Peer pressure couldn’t work – too many people in wheel chairs.

*

Dylan Thomas wrote:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

I wish no-one a conflicted death, but I also see the power of the poem. Barry, for one, is not happy to go gently. Barry is a fighter. At his worst, he fights for his favourite chair, blocking the aisle and raising his voice. At his best, he stands up to oppose injustice, as he did when I, a newly arrived resident, missed breakfast. Barry protested in a loud voice and saved me from a hungry morning.

Breakfast is a battlefield whose places are contested. At the same time, the delivery of food is a system of control and pacification.

One injustice can’t be avoided and Barry talks about it where most of us keep a discreet silence. It’s death. And yet hardly anyone seems to mind. Just as well, for an aged care facility is inevitably focussed on death. In an attempt to mitigate this, managers hire empathetic people who know how to spread joy. However, there is no dodging it when you would like to move to a new room – but it’s currently occupied.

*

Walkers have a status effect. In our minds we can still move freely, but now we suddenly find ourselves burdened with a walking frame, which has to go everywhere with many of us.  If you leave your room without one, persistent voices echo: ‘Where is your walker!’

*

There are men and women here, many of them single. When for a time I found someone to hook up with, there would be a simple but awkward question: where to go? Looking around here I find myself on an airport-sized field of singles units. Although the prospect of romance at first seems uncomplicated and prejudice against sex among the elderly is fading, there is still a dilemma given the various medical issues we have: the minefield of consent. How do we establish consent if we can’t remember?

*

The timetable is based on most residents going to bed by eight pm or so. Getting us back to our rooms is part of us being counted. It is control of time and space. However, it’s been many months now since anyone tried to make me go to bed at eight pm.

A democracy in aged care would need to work through a series of layers. The society around us would have to be more fair. It would look for better ways to finance the system. But above all it would find a way to involve residents more in decisions about how the facility functions. Perhaps one day ‘homes’ will really be more like homes.

 

There are many resources with analyses of the aged care system, but very few provide an insight into the lived experience written by a resident. Tom hopes to write more such pieces in the future. All names in this piece have been changed to protect the privacy of the people mentioned.

Image: inside the grocery store in the village for Alzheimers sufferers at Hogeweyk, the Netherlands.

Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places.

If you like this piece, or support Overland’s work in general, please subscribe or donate.

Tom O’Lincoln is a lifelong socialist and political activist who has written eight books and numerous newspaper and magazine articles over fifty years. His most recent book of political memoirs, The Highway is for Gamblers, was published by Interventions in 2017. Tom is currently living with Parkinson’s disease in an aged care facility in Melbourne.

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Comments

  1. Thank you for the insights. My partner has YOD and the stigma is appalling. He also is an intellectual and very much active as a writer, a fact many find hard to believe. Dementia is such an umbrella term and doesn’t take into account such things as cognitive reserve. The isolation caused by a lack of understanding of what people are experiencing makes things much worse so I hope you will write more about it.

  2. Thanks Tom. We need more of this. Well expressed. Resi care, a dismal end to many glorious lives. Keep writing.

  3. A wonderful piece from a wonderful teacher and one of the left’s most thoughtful intellectuals. Thanks, Tom. Looking forward to reading more of your dispatches.

  4. Loved it Tom!
    A very touching account of what many of us will have to eventually confront.
    Coming to terms with mortality is relatively easy compared to living with a loss of identity.
    I have learnt such a lot from your books and it great see you still making a valuable contribution.
    Thank you Comrade

  5. My grandmother was in care after she suffered a stroke which left her unable to walk and she had little feeling on one side of her body staff left my Nana in a bath unattended l was horrified my adopted Nana who l visit weekly is 93 she has had infected toenails growing like an old camel infected teeth shingles and cold food which l bought to the attention of staff is this age care it’s just appalling that government don’t have random checks on these awful places loved ones reside in my adopted Nana has dimentia and l thank God she has me but how many poor souls living in aged care have nobody

  6. Great contribution, Tom. I have forwarded it to others who might also benefit from it. Keep writing. Looking forward to more of it from you.

  7. Thank you Tom, a very different and important perspective on those living the experience. Keep writing from inside.

  8. Great piece Tom. It’s the first time I’ve read an article written by a resident in an aged care facility. It was thought provoking. Alan David Lodge is an aged care facility run by Barwon Health in Geelong which has a resident’s committee for residents to have some input.

  9. Thanks Tom for your insightful words. It’s great to see that you are still writing. Still inspiring people with your message of hope of a better world.
    Comradely greetings

  10. Love the sense of sober rebellion embedded throughout this piece Tom, keep it up where you can.

  11. Dear Cousin Tom, I’ve always known you as a Thoughtful and Loving person and especially as you kept a long-range and long-term relationship with my Mother. Especially in her aging years you would visit her in CA. So reading your most insightful and personal writing describing “home” in residential care is not a surprise for me. I love you all the more for it. Marj. And, Janey, Thank you!! for your love. Marj Wiens

  12. Great piece of writing and how true. It is such a difficult thing when dementia comes to a family and very few avoid it too. I hope we can hear more of this kind of writing from older citizens when there is so much to discover. We ignore their insight at our peril. Keep writing Tom. It’s so important to hear these ‘voices’ when the dominance of sterile abstractions and systems that destroy the human and social which is the mainstay of well being. We are human beings with complex needs from the cradle to the grave. This cannibalistic capitalism won’t bring it to fruition.

  13. Oops a few errors in that comment. Everyone needs a place where they feel at home and without it we are very sad. We are social beings and this mercantile mendacity is killing us in all kinds of ways.

  14. Such a thoughtful, moving and amusing piece. Well done Tom – you can still hack it.
    Yes, maybe a resident’s association might work for the residents who want it and have capacity.
    Good for you too Janey for helping anable the article.
    Love from Ruth (London)

  15. Ah, but Tom, on reflection I thought you didn’t believe in democracy. How would the proletariat organise the home under its dictatorship?
    Only pulling your leg.
    Ruth (London)

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