Life Beyond Dementia

By Kate Swaffer as told to Helen Signy

A disturbing diagnosis triggered a deep resolve to keep living.

Life Beyond Dementia

I was 49 when I was first diagnosed with dementia. As a retired nurse, it’s the only disease I know of where you’re told to just go home and prepare to die via aged care – not to fight for your life.

That’s what I ended up doing. I am living every day as if it’s my last, fitting in as much as I possibly can, and squeezing all the juice out of every lemon. Now I see dementia as a gift. It’s given me a clarity about life I didn’t have before.

When younger people experience cognitive changes, they’re told it’s because they are middle-aged, working, bringing up kids, paying mortgages. “You’re stressed, you have hormone changes, maybe you have depression.” Research shows that most people under 65 don’t get their diagnosis for three to four years after they first start discussing symptoms with their doctor. But for me it was a little different.

I had a busy life, with two teenage boys, a job and my university studies. I’d needed brain surgery a couple of years earlier, when I was 45, to fix a brain malfunction that I was born with. At one of my regular six-monthly check-ups with my neurologist, I mentioned I’d been noticing some changes in my language and maths ability, and was having some episodic short-term and long-term memory loss. I’d started to see numbers back to front and was having trouble with simple maths. Suddenly I couldn’t spell ‘that’, and I couldn’t differentiate between different spellings of ‘their’ and ‘there’. I’d also started getting lost occasionally on campus, but had thought all of these symptoms were a side effect of the brain surgery.

I’d worked some years before in a dementia unit, but even I thought that only older people get dementia. I never thought for a second that I might have it. Dementia isn’t going into the next room and forgetting what you went in there for and remembering later. Every­one gets memory loss with ageing, just as your eyes deteriorate and your skin goes saggy. Dementia is when cognitive changes are so great that they get in the way of you being able to get on with your usual daily activities or life or work. I was compensating, but it was really starting to impact my life. I sent out a quote that was completely wrong – I saw the numbers the right way round but I wrote them back to front. I also got badly lost in the Barossa Valley and ended up in a farmhouse with absolutely no idea where I was.

There were lots of things they had to rule out, so it took 18 months to get the diagnosis. It’s hard to forget that day. I was told I had a form of frontotemporal dementia, specifically in my left temporal lobe. There is no cure, nor for me, any medication that could change the progression of the disease. The only option offered to me was to give up my pre-diagnosis life, get my end-of-life affairs in order, and acquaint myself with aged care.

I was stunned, and I cried for weeks. I had a driving test and jokingly said to the examiner when he asked me how I thought I had done: “Well I didn’t kill you, did I?” I was totally unaware that he had not felt safe! I lost my licence as I only scored 35 per cent in the test. I had little insight that I’d lost my capacity to drive.

 

Everyday life became more of a struggle. My world was disappearing – the world I used to know, the capacity I used to have, my memory that used to be so sharp. I’d pick up a research article at university expecting to read it for the first time and I would see I had written notes all over it. Bits of my long-term memory started to be rubbed out. I could not remember being at a girlfriend’s wedding, even though I’m clearly in the photos, yet I do remember her father’s funeral six weeks before that. I also started to lose my spatial awareness, misjudging glass doorways. The acquired dyslexia impacted things such as reading signs back to front and it became dangerous to cross a busy road.

The other thing I noticed was stigma and fear in the community, the misperception that all people with dementia are end-stage. People started to disappear from my life. I’ve heard this again and again from people with dementia living all over the world. It’s not through unkindness; it’s just that they don’t know what to say. Others started talking to my husband and not even looking at me.

There is a misperception that people with dementia can’t communicate, can’t understand or won’t make sense. We may have dementia, but this does not make us stupid – or deaf! But this disengagement only teaches us to be helpless – if you’re struggling to speak and your partner keeps talking over or correcting you, it’s easier just to say nothing. So many people with dementia take on learned helplessness, and are often isolated and lonely.

Then I started searching online. I was inspired by an interview with a US clinical psychologist who was 62 when he was diagnosed with dementia. He’d found writing a journal to be therapeutic, so I started my blog – ‘What the hell happened to my brain?’ It helped me to get the angst and fear out.

It took me six to 12 months to stop being stubborn about accepting help. It’s like when you first start needing to use glasses; at first you resist but then you realise they can be life enhancing. I pulled together a number of aids that help me maintain independence, such as laminated help sheets for when I can’t work out how to make a cup of coffee, or to remind me to turn off the stove or how to use the shower. My husband and I have agreed that he should never do things for me that I can still do for myself – I need to work really hard to remain independent for as long as possible.

I was friends with some of the lecturers at university. We discussed the idea of neuroplasticity, that all the symptoms I was experiencing were just disabilities that could be managed through the university’s disability support unit. They organised disability supports, and also a buddy to help me find my way around campus, and software to manage the dyslexia. They helped me to keep living my life.

Since then I have gone on to complete a Masters of Science in Dementia Care and commenced a PhD in dementia in 2016. I have also published two books about dementia and two poetry books as well as continuing with my blogs. In 2014, I also co-founded Dementia Alliance International, an advocacy organisation for people with dementia. I’m now 58 – it’s nearly nine years since my diagnosis, and I give conference presentations, and am continuing with my studies, writing and poetry.

The way I have survived is very different from what I was told to do. I have self-prescribed brain injury rehab. I have changed my lifestyle to be able to come off my blood pressure medication, got fitter, and I now rarely drink alcohol. All these things have the potential to reverse or slow the progression of dementia, especially if you are in the early stage.

 

There is a gross underestimation both in the community and the health sector about the capacity of people with dementia to contribute, to participate and to understand. Almost no-one is diagnosed end-stage with any disease, including dementia.

However, things such as reading have become more difficult now, and I have trouble following the plots of TV shows and movies. But with professional help, I have been able to keep finding my words, and to advocate for people with dementia. I had speech pathology from very early – usually with dementia it’s reserved for the later stages, when you can’t swallow. It has taught me to use my inner voice to search for the words I need. It’s like my words are up there on the ceiling like helium balloons, and I’m constantly searching for them. Managing the symptoms as disabilities is very tiring. But it’s better than not living – and functioning – as well as possible.

If we go on holiday, by day three I can’t remember my husband’s name. I’m like a newly retired person who has no idea what day of the week it is. So I keep myself very busy every day, I rarely stop. I’m like a swan – I look calm on the surface but underneath I’m paddling hard to stay afloat (to function). If I stop paddling, I will sink.

We have to change how we think about dementia. Forget about the human cost – we can’t afford the economic cost to keep telling people to go home and become dependent on their families and the health system, as is currently happening globally. I’d like to see the healthcare sector stop prescribing disengagement and start prescribing rehabilitation and healthy lifestyle changes, as well as proactive disability supports for the symptoms of dementia, in the same way they would if I’d had a stroke. We need to have buildings that are dementia enabling – we have ramps, why not colour contrasting lines on stairs so we can find our way down? We need to demand support to keep living as independently as we can, for as long as possible. Our symptoms are disabilities to be supported, rather than a death sentence. With all these things, it is possible for us to reclaim our pre-diagnosis lives, and to improve our quality of life and wellbeing significantly, at least until the later stages of dementia.

My biggest passion, which is also why I campaign for a human rights-based approach to dementia, is to empower and teach people diagnosed that they can live with dementia, not only die from it, and to educate healthcare professionals it’s also possible.

There are lots and lots of things about dementia that can be really sad. There are many days when I sit on the back step and cry. And it would be easy to get lost in the sadness of dementia.

But I can’t cry all the time. There will be enough sadness down the track. For now, I am just trying to live. Really live.

Drawing on real stories, Diagnosed With Alzheimer’s or Another Dementia by Kate Swaffer and Lee-Fay Low focuses on managing the symptoms and living a productive life. New Holland Publishers, 2016, RRP A$29.99

 

How to Live a Better Life With Dementia

While Kate Swaffer recognises that living with or supporting someone with dementia is not easy, she stresses that laughter and love will get you through. She offers these tips on how people with dementia and their families can live better.

  • Manage your symptoms of dementia as disabilities and demand proactive rehabilitation and disability support.
  • Talk about it. Tell your family and friends how they can support you to remain independent for as long as possible.
  • Reclaim your pre-diagnosis life – don’t go home and simply get ready to die via aged care.
  • It really is possible to live a meaningful and productive life, even with dementia.
  • Manage your lifestyle and health. Stop smoking, be active, eat healthy food.
  • Get your end-of-life affairs in order – whether you have dementia or not!

 

Where to find help

We recommend you consult your doctor if you are worried about memory or cognitive changes. For support if you have dementia or someone you care for has the condition, you can access help from the following organisations:

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