Wendy was only 58 when she was diagnosed with dementia.
This brave lady has written a book about her disease. I was listening to Radio NZ this morning and heard an interview with Wendy who spoke of her life now.
She seemed to normalise the disease.
A disease that has been feared by most of us as we age.
She spoke in such a logical way and explained that there is is a beginning, a middle and so much life to be lived till the end.
I heard her positivity and remembered my late husband’s words as he battled cancer.
He also believed that tomorrow was not promised to everyone, but while he was alive he was going to be happy and enjoy the ride.
Dementia the terminal disease
Dementia is a terminal disease but so is living says Wendy. She explained the things that have helped her along the way, and she held my attention.
She spoke about how her senses were affected, about not feeling hungry or thirsty anymore and having to remind herself to drink and eat.
Everyone with dementia has a different journey, but Wendy tells how different things like colours have a huge affect on her.
A black TV screen switched off looks like a black hole to Wendy but a black mat felt like a hole that she could fall into.
That must be frightening.
Also when her daughters dressed in black clothing, sometimes, she only sees heads walking around the room as there is a void were the black is.
The brain changes
With dementia brains don’t seem to interpret the signals anymore she says.
She found that she battled with patterns on clothes or on carpet, as it can seem as if there is something moving on them like insects crawling about. Her eyes do not interpret the information correctly when in that moment.
Dementia is an invisible disability
Wendy said she gets lost and disorientated sometimes when out and about, but her community now makes her feel safe.
In the village where she lives, they notice if she is disorientated and they help her. They first met her when she used to take photos of everything and she became known as “The camera lady”.
Wendy can recognise the signs now and accepts and adapts to the situation when in the moment. When she begins to feel disorientated she looks for a smiling face to ask that person to point her in the right direction.
She has learnt not to panic and to question whether it is real or whether it is dementia playing tricks with her brain. Photos help her. They seem reassuring.
Dementia causes personality changes and Wendy experienced a change in the way of now liking hugging and touching.
Wendy said she never was a “touchy feely” person but now she loves to be hugged, and her family enjoy her hugs too.
Wendy has normalised dementia. She wrote her book to help others.
She tells us that sometimes it is hard to understand why a loved one with Dementia is feeling fearful or panicking, and this could be a sign that their needs are not being met.
Family who are supporting their loved ones need to try and live in the moment of their loved one with the illness.
If they are fearful of a fire nearby when there is none, it is better to comfort them and say that you will go and look to check that everything is okay, instead of telling them that they are imagining it.
They need reassurance as their world is very different from everyone else’s. Their reality could be insects crawling all over the carpet, when in fact it is just a patterned carpet. Their eyes tell them something different.
Her advice is that if you want to help a loved one with Dementia then try to live in their world for a moment, as they cannot live in yours anymore.
Reassure them. The power of touch and a gentle smile will go along way for somebody who has lost the ability to talk.
It can mean the world, just like it does to a baby when they are learning facial expressions and tones and voices.
If you want to hear the podcast click here
And if you would like to read her book I have put a link for you -click here
Remember, the dementia patient is not giving you a hard time. The dementia patient is having a hard time.
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