A personal account of caring for someone with dementia

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“Traditionally there has been a very bad stigma associated with the disease. People think that it is an old person’s disease and if you look alright, then you must be alright.”

A recent report released by Carers Queensland found that many carers put in approximately 3 times more hours of care per week than they would a full time job.

As part of National Carers Week we wanted to recognise this enormous contribution by sharing some stories from the community.

Graeme Noonan and his wife Vicki live in Tweed in Northern NSW and met back in 1978 at an Oktoberfest tasting at the Exhibition Building in Melbourne.

 “I met Vicki in 1978. We chatted a bit and decided to continue the evening at Lord Jim's hotel in Carlton. We just sort of jelled and really enjoyed each other's company.”

“We talked about our likes and dislikes, both loved sport -AFL in particular. Vic followed Carlton and I Melbourne. Vic talked about how she loved Lobster - my favourite too, and when I said to her that I would like to take yabbying in the country town of Maryborough where my parents lived, she jumped at it and that was the start of our life as a couple.”

 “Vic and I were both very sporty -tennis, squash, indoor cricket etc. and loved to party as well.”

“We got engaged in 1980 and married on 19th December 1981. Vic had trouble falling pregnant for a few years but finally fell pregnant and after an extremely difficult pregnancy David was born in 1987. 2 years later James was born after another tough time and Vic was advised not to push her luck any further.

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“In 1992 we packed up and moved to Kingscliff NSW where Vicki's Mom had moved to. By that time she was the only living grandparent and we wanted the boys to grow up around her. The rest is history!”

Diagnosis at 58

Vicki, once a primary school teacher, was diagnosed with younger onset dementia at 58 in 2013. Her husband Graeme has been her primary carer ever since and kindly shared his experience and insight from caring for someone living with dementia.

 “Vicki suffered a few strokes in the early 2,000’s and we knew something was not quite right a few years before her diagnosis when she was having problems with her memory and problem solving whilst still teaching.”

“When she was first diagnosed, we really didn’t know much about dementia and how it would affect our lives.”

Breaking down the stigma

“Traditionally there has been a very bad stigma associated with the disease. People think that it is an old person’s disease and if you look alright, then you must be alright.”

“Because dementia is not a condition that is visible from the outside, most people think there is nothing wrong with her and from our experience, we’ve found a general lack of understanding and awareness within the community, such as in shopping centres and on public transport.

“It affects everything you can imagine. In the shower one time she couldn’t remember how to open the screen door for example and couldn’t work out how to get out of the shower which was very distressing for her. She also has trouble differentiating between the cold and hot water taps and the shampoo and conditioner bottles. She was washing her hair with conditioner for a while.”

“Because Vicki finds it difficult to make decisions, whether it’s buying a pair of shoes or picking out a new dress, I often have to explain to the sales assistant that she has dementia and they often don’t know how to help.”

“There was an incident once when she got on the bus and she couldn’t remember where to get off. Obviously she froze - the bus driver looked at her, she looked at the bus driver and everyone on the bus started to look at her and no-one knew what to do which made her even more anxious.”

Building awareness

“More awareness would help to build an understanding of how people could help in these situations. It is not a contagious disease.”

“More education and awareness in schools would also help, particularly with secondary school children, who may have a family member, such as a grandparent, or even a parent, living with this condition.”

“People living with dementia have a lot of fear – fear of shopping, of making a mistake. They start to lose their self-confidence and feel that they are a blight on society and are not good enough.”

“More understanding and acceptance would make them feel part of the community.”

“They need to be made to feel safe and that is much of what I do every day; I try to reassure Vicki because the more she gets things wrong, the more anxious she gets and the more it affects her.”

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“If there is one thing I would like to share with other carers it is this. We do this because we still can."

Moments together

“We still enjoy moments together. There is a park with a lake next to the clinic that she sometimes goes to and we go for a walk with the dog and look at the duck and swans. There is also a bird sanctuary a short walk away from the clinic that we sometimes visit. She loves the outdoors and looking for whales and dolphins. Or we sometimes just sit down and have a cup of coffee and talk or enjoy a takeaway meal together.”

“They are small things but they help her feel better. Too much activity around her can make her feel anxious and agitated.”

“My time is now more limited. I use to be able to take off a few hours at a time to chill out and do a bit of shopping or meet some friends for a beer. Vicki’s always been very good with making sure I have time for me. But as Vicki’s coordination is affected more and more, I find I need to be there constantly for her now.”

“If she is home and doing ok I might pop out quickly, but I would still feel very responsible if things went wrong. I want to be around because she gets very anxious very easily - if there is a knock on the door or a sudden noise coming from the neighbour’s house.”

“We’ve found simple things can help. For example, we’ve drawn up a list of things she likes to do and stuck it on the kitchen cupboard so that she can refer to it like artwork, puzzles, crosswords, colouring in, playing cards or playing with the dog.”

“Being a carer is not so much physical strain, as it is a mental and emotional strain.”

“But we’ve had great support from Alzheimer’s Australia and learnt a lot through different groups we have met with. It helps to be able to relate to other people who may be going through the same thing.”

“At times we’ve found it to be quite a lonely disease for both parties. I come from Melbourne so we have no family here. It turns out that a lot of the people I thought I could talk to about this, I can’t. Not because they are cold hearted, but because it is too difficult for them to understand and there is a stigma associated with dementia.”

“If there is one thing I would like to share with other carers it is this. We do this because we still can and I would like to help other people by letting them know that they are not on their own. If we all share the workload we can help each other out. Just take one day at a time.”

 

About Younger Onset Dementia

Younger onset dementia is a term used to describe the onset of symptoms of dementia before the age of 65. Based on research evidence, it is estimated that more than 26,600 people in Australia have younger onset dementia.

 

Support available

Alzheimer’s Australia provides individualised information and support to improve the quality of life for people with younger onset dementia. For more information you can call the National Dementia Helpline on 1800 100 500 or visit www.fightdementia.org.au

Alzheimer’s Australia (Qld) and Alzheimer’s Australia NSW also offer training courses for family carers. Our carer programs are designed to help you and your families with practical strategies for managing day to day. For more information please visit www.fightdementia.org.au and select your correct state.