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Challenges of a Carer

Personal Stories

Challenges of a Carer

There is a saying - Life begins at forty. Three months after I turned forty, my new life began. In 1986 my husband had a serious accident whilst pursuing a life-long hobby of photographing steam engines and was diagnosed with ABI.


I was unprepared as to what lay ahead and the challenge of becoming a carer was an unknown quantity. Previously, I had confronted many challenges and conquered them; but here I was at the grand age of 40, facing the most daunting challenge of all - two teenage girls and a brain damaged husband who was now like another child.

Barry spent 15 months in Penrose House, the Head Injury Wing at Baillie Henderson Hospital in Toowoomba. As he made improvement, he became very frustrated and confined like a caged animal, so I brought him home to live. My first reaction was that I had dug a hole and was buried in it - trapped - never to see daylight again. That day my most daunting, unknown challenge began.

Barry was an Army Officer and flying instructor before his accident and these regimented practices remained as part of his muddled life. In the early days life was quite chaotic, trying to keep within Barry's routine scopes and being a "Mum's Taxi" for the girls, whose lives still had to be considered. Barry couldn't understand that there were four people living in the house who needed a life. It is common for victims of ABI to have limited insight into the feelings and needs of others. Slowly a routine emerged; but I felt constantly stretched to the limits and at times the loneliness was overpowering.


For the carer and the immediate family it requires much patience and understanding to cope with an ABI person who has little or no short term memory, mood swings, unbelievable obsessions and a total personality change. Because of this total change to the person the carer becomes very isolated as the months and years slip by. In the first few weeks I received a lot of visitors and support but found as the weeks and months turned to years, friends and family dropped by the wayside. They had come to realise that he was not the man that he was before the accident, even though he looked the same.

Deep down though, an ABI person is still very intelligent. Their knowledge is locked away, like a computer that cannot be accessed without the right code. In Barry's case, sometimes the trigger of a few words, a picture, or a face can be the code to open up a Pandora's box of memories for a few hours and I need to be a very switched on cookie to be able to answer all his questions. Of course they usually relate to something that happened 20 or 30 years ago, and my poor old brain cells have trouble remembering that far back sometimes. Barry then gets frustrated with me, because I cannot remember what he wants me to or I cannot
It requires much patience and understanding to cope with someone who has acquired a brain injury understand what he is trying to relate to me.



Unfortunately Barry does not retain most of what he was told and by the next day it is all forgotten again. His short-term memory loss is becoming more pronounced as the years go by. Mind you, if he is asked any thing in regards to airplanes or steam engines, he shows no hesitation and is spot on with his answers. These interests are stored in his very long term memory bank, as they have been his life long hobbies since childhood.

Barry is a volunteer tour guide at the Museum of Australian Army Flying at Oakey and tourists have no idea that he has an ABI. Through routine, repetition and his retention of long term memory knowledge of the Military and its aeroplanes he has been able to make a life for himself within the Museum environment.

By now you are probably thinking "Gee she is lucky". Yes, I am lucky and I know it. Very Lucky. I am extremely humbled when I hear of the atrocities that some carers have to cope with. I think life has got easier for me - or maybe after all these years I am getting more adapted to coping with Barry and being stuck in a rut of a life - but there are still many down sides.

Barry has no taste and doesn't know what different foods are called. I have to make sure all food is fresh and safe in the kitchen. He has a habit of every time he walks through the room of getting something to eat - either a piece of fruit or cake and turning the kettle on and forgetting about it, so we have an electric one with an automatic cut off. He has no sense of smell, so I have the same predicament with odour and have smoke detectors in the house in case of fire. His time management skills are non existent, he gets part way through doing something and then becomes side tracked, starts doing something else, and it is hours or days before he gets back to what he was originally doing. When we are going for an appointment, I have learned to tell him we are leaving at least half an hour before we are due to go - and we still run late.

Because people speak so quickly on TV, in meetings and in-group situations Barry only picks up every second or third word, so he misses a lot of what is being said. I might add this is extremely frustrating for me when we are watching TV because he keeps asking me what is being said, or what does a word mean. So by the time I have told him what was said or explained to him what a word means, I usually miss the punch line of the story and miss out too. He also has an annoying habit of flipping through the channels during ads, and by the time he gets back to the channel we were watching, it is well into the next scene.

He becomes very upset with me when he thinks that he has not been told something. Unfortunately this has developed into such an obsession that he believes that I never tell him what is going on. I make a point now of making sure that he has written it down when there is something that I know he has missed or not understood. He is not deaf, just slow to pick up dialogue.

He has little comprehension of the value of money and asks me for "little bits" when he wants any. I think he imagines my purse is a bottomless pit.

Barry also has numerous neatness obsessions around the house, which took me a long time to get used to; because before his accident he was such an untidy man. We would have the neatest rubbish bin and dirty clothes basket in Oakey. I'll bet your knives, forks and spoons aren't in nice neat piles like ours are in the cutlery draw. Plastic shopping bags? - they are folded into nice neat little squares. I'll bet your Chronicle isn't taken out of its plastic wrapper of a morning and with pains taking precision ends up with a neat crease down the middle of each page before you get to read it - to name just a few. What happens to the plastic wrapper? It is folded into a neat square and stored in nice neat little piles.

The biggest down side of my life of course is that I have lost my best friend, my mate and my lover. I am still married to the man who looks like the man I married but he is no longer that person.



Many with a brain injury have a split personality, who folks see outside the house and whom the carer lives with are two different people
challenges and conquests are ongoing. I had been so preoccupied with giving my children and husband the best of care that I finally realised that in those years, no one had "cared for the carer". Now that both girls have made their own lives and have families of their own, I can begin to focus on my own needs.

I have learned to better cope by fulfilling myself outside the house with yet more challenges, in my volunteer work.  One of my interests involves running a Carers group in Oakey, where we have 10 to 12 Carers who meet monthly. We have variety in our meetings such as speakers, picnics and outings. The main theme for our meetings is fun and laughter. We leave our stresses at home for a couple of hours. We each take a plate to share for lunch and end up with quite a feast. Over lunch we have our "bitch session" to get our problems off our chest. In the five years we have been meeting we have got to know each other well and feel totally at ease when talking over our problems.

My husband became brain damaged from a freak accident. No one could have predicted that it would happen and in my wildest dreams I'd never have thought it would happen to us. Believe me, life with ABI is no fun. The carer is probably just as much the victim and while he or she keeps on smiling and coping, they are taken for granted by everyone.

It is essentially part of our society that if one of us is disadvantaged to the extent of needing total care, care will be given. In the majority of cases the primary care giver is an immediate family member. This is as it should be - after all mutual support within a family is also part of our society. But surely the question can be asked - "How much of a carer's life has to be lost in caring for somebody who has lost part of their life?"


I suppose it is fortunate that no one can predict the future. I had confronted challenges and conquered them in the past. I have coped reasonably well with the challenges of the past sixteen years and I pray that the good Lord still continues to give me the strength, courage and wisdom to face the challenges in the future. In closing I would like to quote a poem that was published a few years ago in the Headway Magazine:

He's not quite the same
But it ain't him to blame
He wasn't to know in the prime of his life
That the sickness would eat at his brain
So now I'm his mother
Where I once was his wife
For the sake of his future
I must forfeit my life.


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