LORRAINE, carer for her husband

“I didn’t know I needed help.

My husband was diagnosed with Alzheimer’s Disease after a series of mini mental tests indicated a rapidly deteriorating cognitive situation.

I have been registered with Carer Support since this sudden and unexpected situation led to our registration with My Aged Care and the overwhelming number of phone calls, meetings, information packages and sessions, assessments and a growing list of phone numbers given to me to call “for the help you will need to access”.

I received a copy of Carer Supports “Sharing Sheet” and selected the Caring Companions group. From the very beginning, I found it to be an oasis of calm and quietness in the midst of what was becoming for me a chaotic, and at times out-of-control situation. I have continued to value that quiet and calm space. I enjoy its lovely morning teas, the changing faces of the people who come each month who know exactly what I am experiencing in my now changed life and with whom I can connect because of my shared experiences with them.”

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AMY, cares for her auntie

“I find it difficult to categorise myself as a carer. I’m really just looking after Auntie because I love her.”

Family is a high priority within her Vietnamese culture and as the eldest child, the responsibility traditionally falls to Amy to care for her sick relative. The choice to take up this mantle is something she considers a privilege and she values the fact that she can contribute to family life in such a significant way.

“I speak English better than the rest of my family, which gives me a unique role in translating between doctors and family members. I make sure Auntie understands her medications and diagnosis.”

Beyond this, she does her Auntie’s shopping, prepares her meals daily and provides transport to her many medical appointments – all while working full time and enjoying life as a newlywed.

“My Auntie feels very sick and struggles with depression and when I am with her I try to make her happy! I make her laugh and cook things I know she will really like.”

At times Amy finds it difficult to get support from her family.

“I am young and in their eyes it is my duty to care for her without complaining, but my husband is so understanding and is a wonderful support to me.”

Amy is adamant that she doesn’t want to have any regrets:

“I want to enjoy my Auntie while I have her with me and give her all the support I can. When she is no longer with us I will know that I did everything I could to make her life better and show her how much I love her.”

ATHINA, carer for her brother and daughter

If you want to know what it’s like to be a carer for most of your life, just ask Athina.

Her brother George had a severe intellectual disability, and while her hard working parents were supporting the family George would only listen to her.

As such, much of her young life revolved around his care, sacrificing many social opportunities young people usually enjoy. Years later, the birth of her second child Renee again placed her in the position of carer.

“When I first found out that Renee had Rett Syndrome, I was devastated; I couldn’t get out of bed for four days. My mum came over and said to me ‘I am the only one who truly knows how you feel,’ and she reminded me that many people lose a child in many different ways. She really put it into perspective for me.”

Athina has been highly conscious of the impact upon her son Nathan and thought carefully about his level of involvement. Renee adores Nathan:

“He is her favourite person in the world, she just loves him! He adores her too and I feel that he has learned a lot from Renee. He has learned patience and tolerance that maybe he wouldn’t have had.”

Athina attributes her inner strength to her positive, proactive approach.

“Having George actually helped because as soon as I realised Renee was disabled I kicked into plan straight away. There is more help available now than what there was with George. I knew that I had to get some services in place because I knew that I would get tired.”

“We have really good friends, I’m really lucky my Mum and Dad are still alive, I’ve got my sister and I’ve got a great kid so I don’t whinge. I also see kids who struggle more than Renee, or families that have two kids with disabilities. I always try and look at life like my cup’s half full, not half empty.”

CORAL, carer for her husband

“Brian had always been an outgoing person who was a wonderful dancer, played drums in a band, played golf; he was an active person.”

All of this changed as Parkinson’s disease began to affect his body. Coral’s response was to take action.

“I started reaching out for support and making a plan.”

Coral is adamant: “If something has happened that’s going to change the way you live, get out there, ask questions and find out where to go for help.”

Now that Brian has been classified as high care, Coral has help in place which enables her to care for Brian full-time with as much structure, services and support as possible. However, it is still difficult to experience the changes in both her husband and the life she knew.

“We both used to work and enjoy a lot of friendships. But some friends couldn’t cope with the changes in Brian and eventually they have taken a different path in life and so have we.”

Coral has found that being part of a coffee group with other people who have someone to care for has given her the opportunity to express herself and share her experience.

“We talk about caring – the good, the bad and the heartbreaking things.”

Coral’s capacity to face up to the truth of her situation is what she considers her key to survival.

“Don’t be in denial about what your life is going to be like – be honest with yourself and others about it. You need to be assertive and say what you need, tell it how it is!”

DIMITRI, carer for his daughter

My name is Dimitri Karabetsos. I am 46 years old. As my name suggests, I am from Greece. I was born in 1963 in a country on the other side of the world. I finished school and got a degree in Computer Programming. As I started working I had to go into the army. Army is compulsory in Greece so I served in Special Forces as an elite diver, skier and air diver for 27 months that included very hard training.

Just before the end of my army duty, I met a beautiful girl and fell in love, but that girl was from the other side of the world in a place called Australia that I knew nothing about. But as they say, love works in mysterious ways, so two years later I married that girl from Australia. Her name is Athina.

A couple of years later our son Nathan was born. A healthy little boy full of beans who changed our lives. We wanted another child so our angel Renee was born five years after Nathan. She was so beautiful, cute and curious like any other healthy baby.

When she was around 18 months she was diagnosed with Rhett’s Syndrome. Rhett’s syndrome is a childhood neurodevelopment disorder characterised by normal early development followed by a loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, gait abnormalities, seizures, and mental retardation. It affects girls almost exclusively.

Finding this out was like a knife to our heart. Our dreams for our little angel just disappeared. It was very hard, especially for my wife as she has an autistic brother. In her early years she helped take care of her brother and when eventually she started her own family she then had to do the same for her daughter. But we had to be tough so we made our family full of love and hard work.

My son Nathan became very sensitive for his little sister. He looks after her, spends time with her and helps around the house so life is a bit easier for the whole family. He is growing to be a responsible adult. As well as caring for his sister, he studies law at Flinders University. We are very proud of him.

Nearly three years ago as I was working as a swimming pool installer. I got involved in a very serious car accident that nearly cost me my life. I was actually pronounced dead at the scene and later again at the hospital. Yet the years of rehabilitation and my determination has seen me back to a reasonable level. So I survived and now they are just bad memories. The last couple of years have been very hard for the whole family, especially for my wife who cares not only for my daughter but for me as well. But I am getting better every day so I can take some of my old caring role back.

During those tough moments we have, Carer Support gives us a break when we need it and help with some chores around the house. Through Carer Support, I discovered the male carer groups and became a volunteer. This gave me the opportunity to meet other carers and share my emotional thoughts and hopes. It also gives me a chance to hear the other carers’ stories.

The Male Carer Program keeps the group in touch, giving us creative days out and providing very interesting guest speakers for subjects relevant to carers.

I am very happy I am a volunteer for the male carer group, but even happier that I can give some positive output to other male carers.

JULIE, carer for her daughter

Rebeka’s Down syndrome was not immediately evident when she was born.

It took three days before Julie would learn about her daughter’s diagnosis and in her words she entered “a cloud of grief in those early weeks.”

“I was very worried about what it would mean for her and the rest of our family – what will happen to her, what will she be able to do, how am I going to do this?”

In hindsight Julie feels strongly that she had a poor mental image of what disability meant and throughout her journey she has come to see her daughter’s disability in a different light. Early on, Julie put very structured support in place which connected the family with professionals that made a big difference both to Bek’s development and Julie’s confidence.

“I could see just how much difference these workers were making and how people with disability could live a very rich and full life.”

Her introduction to the then “Frazzled Parents Group” at Carer Support opened up her world as she mixed with other families that understood, and sh became more informed about being a carer.

Julie is a mother of two (one with a disability), works full time, is often required to act as carer for other members of her family and has also been through more difficulties than one family usually has to bear. Julie’s keys to coping are as follows:

“Don’t beat yourself up about the bad days, don’t compare yourself with others, get plenty of rest…”

And she insists:

“Make sure you have a sense of humour!”

 

MICHAELLA & IMRE, carers for their mother

It has been ten years since their mum Karen was diagnosed with Multiple Sclerosis. Michaella was ony four, and says she “can’t remember her [mum] any other way.”

To them MS and its realities have been a constant companion they have learned to live with – with a smile.

Karen’s health and physical abilities can change each day, requiring varying support depending on her state. “We have to take each day as it comes,” Imre explains. “We don’t think about the future very much.”

The considerations they have to make at home differ greatly from families without disability, such as keeping the bathroom dry or the floors tidy to prevent Karen from falling, making sure she stays cool in hot weather, or helping her to stand when she “gets stuck!”. Even something as simple as opening a jar for her on days when her arms are weak makes a big difference to Karen.

“If they were not here with me I would just sit here and feel sorry for myself!”

But self pity is far from the behaviour of this tight-knit family, who prefer to laugh through it all as much as they can. Michaella feels that Imre’s attitude helps. “His humour onto mum makes me laugh which makes mum laugh and helps me to cope with it a lot easier. So it’s like a chain that goes around and around.”

Michaella worries for her mum, especially if she doesn’t answer the phone or take her vitamins, but their overall outlook is pragmatic. Both of them contribute greatly with household chores and, despite sometimes wanting a break, enjoy elements of having responsibility at home. Imre says:

“There’s definitely moments where I want less of it all but I suppose having a little bit of discipline and responsibility will help me out in the long run.”

Cooking is Michaella’s specialty and Imre doesn’t mind it either. “It helps us with Home Ec, when you’ve gotta cook stuff and you already know what to do!”

Michaella cites three things that help them to cope:

“Humour, going out with friends a lot to get your mind off of things, and do what you have to do to make your parents happy!”

TONY & NIKOLA, carers for their son

As a couple, Tony and Nikola lived a busy life filled with growing careers, study, and a beautiful baby girl.

After their second child started to show unexpected behaviours for his age, their drive and focus automatically shifted to become devoted to the development of their son. Nikola decided to be with him full time in order to provide as much love and attention to detail as she could – a decision they both believe has reaped development rewards.

“At two he couldn’t speak or walk, he didn’t even know his own name.”

Early intervention and a lot of hard work, expense and dedication from the family means he can now communicate freely and play sport like his peers. A key philosophy shared between both parents is the importance of avoiding diagnostic labels to describe their son. Tony explains, “That was one of the things that we were wary of, is avoiding that pigeon hole and bounding his potential. So from early on right up to now, we still don’t want to bound it and we work with what we can.”

Despite his improvement they feel there is more to come, though they emphasise that it will always be a journey of discovery. Nikola says:

“I so much want to just be in his mind for an hour to see the world through his eyes!”

Tony and Nikola feel strongly that communication, responsiveness and an open mind are key. “Certainly the outlook is promising,” Tony says. “He’s got plenty of potential. You can get a little caught up in compensating for his disability but there’s a young boy in there who wants to get out and discover things for himself.”