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CARER STORIES Chanakarn loses job to care for Mum
CARER STORIES Chanakarn loses job to care for Mum
| Chanakarn loses job to care for Mum |
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| Tuesday, 02 December 2008 00:00 | |||||
“Mum was living with me and my father was living with my sister and her family, as they are both elderly and need support and it is too hard to care for them both under one roof,” Chanakarn said. “Mum was fairly independent, even though she did not speak English. “Then she unexpectedly had a severe stroke, paralysing her left side, and was hospitalised. That was the start of the difficulties that ultimately led to me having to give up paid work and go on a Carers Pension.” Chanakarn found that her mother was very distrustful and quite fearful of the hospital environment. The food was different to what she was used to and made her feel unwell; she felt disorientated in the unfamiliar surroundings and no-one spoke her language. She was put on medication but didn’t understand what it was for, or the likely side-effects. “Mum just couldn’t cope and cried and called for me all of the time. I would go there before work very early in the morning with food I had prepared for her, feed her breakfast, shower her, dress her and put her in the wheelchair, and then I’d go to my office job,” Chanakarn said. “As soon as I finished work, I’d rush back to the hospital to help her with the evening meal, catch up with the medical staff, help her with physio exercises, shower and toilet her again, then stay with her until late at night, often not leaving before midnight, when she was finally asleep, because if she wasn’t deeply asleep and I left, she’d start crying out for me again. “Throughout this time it was very, very difficult for me. Mum was very sick and I had to nurse her morning and night. “It was recommended that I find a nursing home for Mum, once she was discharged, but I love her dearly and of course wanted to look after her at home. “But to do that I had to quit my job and I will not be able to return to work in the foreseeable future. I will just have to keep on going as best I can. I can’t think of any way other than giving up my work to be able to look after my Mum - especially as she doesn’t want to live with any of my siblings. I also promised her that I would look after her if anything happened and I must keep my word. “In the Asian community, we don’t like to talk about our problems openly and family business is private business. It is not considered allowable to go and ask for help - especially not to look after your parents. And there is absolutely no way in the world we would put one of our parents into a nursing home. If you did that, it would be the end of all of your family relationships. No-one would ever have anything to do with you again.” Chanakarn said that initially, when her mother was first home from hospital, she was coping reasonably well, with a small amount of paid help. Later, she used up all of her savings to modify the house and buy essential equipment like a wheelchair, shower chair, a special bed and so on. “The money ran out very quickly and I went on the Carer Pension but I found it was not enough to pay utilities, Mum’s treatments and food,” she said. “After many months waiting for an assessment from ACAT, and a year waiting for the EACH package (from Uniting Care) to arrive, I thought I was going to get some relief. Then one day just before the New Year, they left Mum and me hanging in the air, with no services and no explanation as to what had happened. I didn’t know what to do, so I had to carry on the journey alone. “I soldiered on and more than two years down the track, I was getting very tired and tried to put Mum into respite for an overnight stay, just so I could get a night’s unbroken sleep. Somehow my family found out and they turned up at the respite centre and made a huge fuss that Mum had been ‘left alone’ and that I wasn’t taking proper care of her. It was awful. (I dare not try and do that again as they have said they will disown me if I don’t look after Mum properly.) “Anyway, I struggled on until the end of that year, when Mum ended up in the hospital with pneumonia. At first I thought they were fixing her problem, then I realised Mum’s recovery was very slow, and she started acting very weirdly. “She was sick for many weeks and was deteriorating more and more. I could not understand what was happening. She continued to lose her functionality and her speech. I thought the medications she had been placed on were having a negative effect. I knew what she had been like straight after the stroke, when she could at least still talk and eat, but after a couple of weeks in hospital this time, she was more and more drowsy, lost all of her speech, lost all interest in food and developed chronic diarrhoea. “I kept telling the doctors and the specialists that I thought the medications were causing these effects but they disagreed and treated me in a very condescending way. “In the end I thought Mum would die if I left her in the hospital so I brought her home once again and went about finding a different neurologist to assess her. When I finally got an appointment and extensive tests were done, the specialist agreed that the medications Mum had been on were totally inappropriate for her and had caused a toxic build-up in her system, so a new regime was prescribed. “Mum has improved slightly since the change in medication, as is now eating again and starting to speak a little, which is wonderful. I am so grateful to the specialist who acted brilliantly and kindly. But now, after four long years, I am constantly exhausted and because I can’t put mum into respite I never get a break at all. “It is all a bit grim but I am resigned to my fate and even if I still can’t ‘smell the roses’ I am at least out of the family ‘deep freezer’. “So to all dear carers: hold on tight to your beliefs. The bad times do pass away; there is always hope! I always think of the rainbow that comes after the rains. It helps to get me through the dark nights.”
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