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CARER STORIES All Advice Is Well Meaning
CARER STORIES All Advice Is Well Meaning
| All Advice Is Well Meaning |
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| Tuesday, 01 July 2008 22:01 | |||
 Ray has spent many years working as a mental health professional. But like most other carers, he was never prepared for the role he was coming to play as a carer for his partner of 33 years."It is something that creeps up on you. We were going along fine when all of a sudden... Bill has had chronic bronchitis, Chronic Airways limitation, and it just escalated and got worse as they do. "I cut down on work 3 years ago, just to have more quality time. Between then and now, I don't believe i could take on a full time job anymore. I could, but I wouldn't feel OK doing it. There would be several moments in the day when I would not feel OK with it. I would lose a good work/life balance. For me I'm Bill's carer, I care for Bill and if the shoe were on the other foot, I would really hate that. So in some sense I count myself lucky that I am fit and able to care for him. "I was raised with an alcoholic mother who was often extremely out of control, so my life taught me a few things about needing to take the reigns. Probably from about 16 I was really a carer at home, so I had some experience. I really don't think that working in the health care system taught me very much about being a carer. I worked with carers all the time, but I worked with carers in mental health, which is different from chronic illness. "Someone else identified me as a carer only 18 months ago. It actually took that long. In fact recently a friend of mine asked me why I have not applied for a carers benefit. Why haven't you considered it? I just simply hadn't thought it. Now I am actually on a carers payment. For the first time I have accepted that help, which I found was a difficult decision. "I have never in my life had anything to do with Centrelink until I applied for carers assistance. I have to say that that ride and that road was made very smooth. They were sensational. They even said to me at one point, when I dropped in some papers, the lass said, this is not the end. You don't have to stop work to do this. You can do some work. She even asked me what I did and she said I have a sister in that business, I'll give you her phone number. I think my treatment at Centrelink was above and beyond. "We have a good family GP, who is great and listens and trusts your opinions. I think this is very important. Recently we had a situation where Bill was acutely ill. We had to rely on emergency medicine at the local hospital and I was very disappointed by the treatment."  In shifting away from his career focus, Ray found that there were many challenges. But none that were so great as to deter him from making the much needed changes in his and Bill's life. "Changing from worker to carer certainly put a different light on things. I could not easily change my decision about work from then on. I was at a point where some time in the near future I would have been forced to make the decision anyway. But I always thought, I'm a free agent, to do whatever. Being fully identified in a caring role changed that balance. It changed my sense of getting on with it. I no longer felt that I could easily get on with it. I had to look at what was in front of me. "It was daunting at first. I was letting go of a potential career path. I prided myself on what I did and I did it bloody well. I invested a lot of myself in my career. Now I had to put that on the shelf, which was hard. But then I did not have to think about building relationships and a career back in mental health, which was freeing in many ways. "In the beginning it scared the boots of me. It made me feel miserable at first. Not about the fact I had to care for Bill, but that I had to let go of something that was important to me. I had to let go of options that had defined a lot of who I was. "I do have more time than I need to fulfill my caring role. Time to myself was one of the things I was determined to keep. If I was not going back to work, I was determined to do something meaningful with my other time. If I didn't have that, life would be very tough. I really feel sorry for people who don't have something else and have to juggle 24/7 care for someone they love." Ray finds a great deal of identity and friendship from staying active in his community. But frustrations arise when what was once common is now a traumatic experience. "I try and maintain a balance by doing a few things in my community. I joined U3A which I have found to be very worthwhile. That is nice exposure as I like telling and hearing yarns, which really costs me little. I write a story once a month and share that with the group, so it is a lot of benefit and only a small cost. I have always been a political animal and when I ran into a few like minded people I have been looking at getting involved in local council in some way. I would like to contribute at that level of government as part of my spare time. "Though even spare time is difficult to manage when you need strict planning to get around. Our lives now are extremely limited when compared with what went before. For example just getting on a plane is a nightmare. Getting on a plane means we need to organise oxygen which requires a process. We tried to get to Adelaide when Bills brother was dying and the process just took to long. We did not get there in time. It took us four days just to get the certification for taking oxygen on the plane. Everything has to go to so many different people. When you get to an airport with someone who has difficulty moving, you are sent from one point to another and back again. By the time you get on the aircraft everyone is exhausted. It is not anyone being obstructive, it is just going through the processes you need. Because of things like this it is difficult to plan time away. All the things you took for granted, like jumping in a car and going away, can't happen. That is the same for everyone. So the spontaneity is the thing you miss. "The truth is I have not been exposed that much to agencies or situations that identify me as a carer. We are at the happy point where we don't need intervention. We have been able to manage our own situation without going under. My recent trouble with emergency treatment for Bill was the first time when I felt like I was going under, I very nearly lost it. I just wanted some on to look after him. Anger always rises from fear or hurt and I felt hurt that the system that I had given many, many year to had dropped us like a hot spud. That may not be entirely fair, but that was my perception. I was fearful that I would not be able to cope. Add fear and hurt and you get a cranky bugger, which is out of character for me. Today things are more back to normal and my perception of that disaster was incorrect. But at the time it is hard to see a way through." When asked about changes in his friendships and people treating him differently as a carer, Ray feels that he has been very fortunate. "I don't know if anybody took time to identify that we were becoming more socially insular, so the transition to carer was not so different. I have had a lot of support from my sister who is not far away and we had a lot of support from friends. We were lucky enough to have some lifelong friends who spent a lot of time with us in the early days when we realised we were not free to do what we wanted. They made the time in their life for us which was very heartening. People obviously perceive that the situation is different now and they forgive that and get on with being a friend in a way that still works for us. "I get more advice than you could poke a stick at. I could start writing a column with all the things I have been told. Generally speaking it is always well meant. People are thoughtful and good, they generally want to be helpful. That is a premise I have lived my life on. I feel I could give some very useful advise with what I know now. I taught nurses in mental health for many years and reflecting on the last few years I can see that you have to know the carer to make the treatment more meaningful. "Carers need to hear that they are not alone. There are others experiencing the same thing. They also need to not take it personally. When the person you care for is not making it easy, it is not about you. It is probably about them. So take a breath. "I would like to do more for carers, so I hope that I can get involved in carers groups in the future. There is a special bond between like people, people who experience what you do, so I think carers networks are fundamentally important."
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