The Roads are Unmade and Unmarked

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Leannes’s story is one of heartbreak and resilience. Her’s is one of 6 in a series we published during Dementia Action Week 2022 called – Things I Wish More People Knew About Dementia.

The Roads Are Unmade and Unmarked by Leanne Cull

There are many illnesses that get a lot of publicity and about which most people are aware. We know about the many types of cancer, for instance, and that today many cancers are cured, others are treated and the persons’ life is prolonged. And then the aggressive forms that move rapidly and end a life.

But what do the majority of people know about dementia? Most think it is what happens to granny when she gets old. We laugh because she went to the supermarket to buy tea- bags andsugar and came home with six packets of cornflour. And again, we chuckle because she put the teapot in the fridge. Is granny going senile or does she have dementia?

But how many people know that dementia is not confined to the elderly? That children have been diagnosed with this incurable disease? And that there are over a hundred forms of dementia. That the word ‘dementia’ is generic, it covers a very broad spectrum of its various forms.

I wish more people knew that dementia is a sneak! It creeps in and makes itself at home without anyone being aware for some time. Gradually we notice little things, a forgotten appointment from someone who never forgot. Becoming absent minded from a person with a razor-sharp mind. And misplacing things. As these and other signs become more pronounced, we think to mention them to the doctor.

I wish more people knew that dementia is a road trip, the roads are unmade and unmarked, full of potholes and unexpected turns. 

There is no map for this journey, we travel in the dark.

If more people knew about dementia there might be more support for the one holding their hand on this long road. If they knew what is like to watch your life partner slip away, until you are left with the outward shell. The intelligent, funny, caring person fades and asks for chocolate when they never liked chocolate!

There is no book of instructions for this complicated disease. 

We can Google and read about the stages of dementia, and then discover that dementia does not follow the rules! We can identify stages one and two, then jump to four, what happened to three? If more people knew how hard it is to supporting someone with this disease, to watch their brain get more tangled, to watch, for instance, a prolific reader no longer be able to remember what they read yesterday, and no longer be able to decipher the written word is heart breaking.

Watching helplessly as they start to slur their words, or need a bib at mealtimes, and lose control of their bodily functions, it is like their life being wound back so that they are babies again, needing as much help and carenow as they did in their infancy.

For the carer/ partner it is devastating. One can only watch on helplessly as the disease runs its course. It is a full-time job, looking after a person living with dementia, no longer able to seek their advice, instead having to be the decision maker, no more ‘we’ just ‘me’. So often feeling overwhelmed but there is no time for tears. No more sharing – just caring.

I wish more people knew this about dementia.

Leanne Cull

Thank you Leanne for having the courage to tell your story.

Our Umbrella Dementia Cafés bring hope, connection
and a better quality of life for people and their care partner experiencing dementia in their community.

www.umbrelladementiacafes.com.au

If you need urgent help or want some advice about dementia, contact the National Dementia Helpline

Free call: 1800 100 500

Webchat: dementia.org.au/helpline/webchat

Email: helpline@dementia.org.au

The National Dementia Helpline operates 24 hours a day, seven days a week, 365 days a year.

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