RocketTheme Joomla Templates
     
Home CARER STORIES Colleen took over when her dad died
Colleen took over when her dad died PDF Print E-mail
Tuesday, 29 January 2008 04:31

womanflower.gifWhen her father died suddenly two years ago, Colleen was unexpectedly thrown into the role of being the primary carer for her older sister, Margaret, who has paranoid schizophrenia.


Colleen’s father had been caring for Marg, 56, on his own ever since his wife died several years ago.

Following his death, Colleen, 48, an occupational therapist, and her husband, Steve, were faced with the challenge of integrating Marg into their family of four children.

“Marg was diagnosed at 23, so the condition is something that’s been very familiar,” Colleen said.

“We siblings had briefly discussed with mum and dad about what would happen to Marg when they died, but there were no concrete plans.

“Marg had come to stay with us occasionally when mum and dad needed a break. Basically when dad died, although there’re five kids in the family, there wasn’t really anyone else within the family capable of, or willing to, take care of Marg—financially, having room in their house, and also being tolerant of her, and just that willingness to put up with her quirkiness and the oddities of her behaviour.

Colleen and Marg’s brother lives in Perth; one sister lives in Sydney and the other in Ocean Shores. “I guess the others just felt they couldn’t take her on,” Colleen said.

“The thing is there was absolutely no planning. Dad died unexpectedly, and it was just: what’s Marg going to do now?

“Within a week, she came to live with us. It was all a bit sudden, but at the same time, there were advantages—she could keep her psychiatrist and it was a shorter move as we lived nearby. It was the least amount of change and the least intrusive transition.”

Colleen’s two oldest children were at university, so it was herself, husband Steve and two high-school-aged sons in the house when Marg came to live.

“Steve and I had talked about it ever since we’d been married. He grew up in a similar situation,” Colleen said. “His mum’s sister had an intellectual disability and came to live with them when her parents died. He remembered growing up with her, so he was very tolerant of the whole situation with Marg.”

Colleen said her kids had grown up with ‘Auntie Margie’ too—“the mad auntie, but delightfully mad,” she said with emphatic positivity.

“I guess for me it was at a stage too where there were a whole lot of changes—my job, my daughter went to uni, my son started high school… It was, wow! A whole new year of dramatic change.

“And you just do it. The alternative is quite scary.

“At the time I was overwhelmed by the intensity of it all. Even though she’s my sister, it was different and new that she was actually coming to live with us. It was a challenge knowing how to deal with her grief—she was very dependent on dad. So the challenge was how to be open to deal with her grief as well as my own, and help Marg cope with the enormous transition.

“Our household is very busy, and change is not an easy thing for anyone and especially not for Marg.

“The other thing was there was no alternative. So whenever anyone asked, ‘How’s it going?’ I said, ‘Well it just has to go! It just has to work’.”

Colleen said that because of her background as an occupational therapist, she was fairly aware of many things about the mental illness diagnosis and about the needs of people with disabilities, so that aspect of caring wasn’t too new.

“But I guess having any new person move in with your family always has that intimate depth, that intrusion into personal and family space. But we had to remember that this was now her family and home, too, and think about how to ensure she felt relaxed and that she didn’t feel as if she was intruding.”

Work ‘n’ Care asked about challenges associated with Marg’s condition.

“She experiences lots of thought disorder stuff, so it’s things like the voices coming out of the shower—therefore she won’t have a shower very often. She’ll say, ‘No, I feel frightened’. So it’s a challenge helping her maintain her personal hygiene. We eventually agreed that once every three days was enough,” she laughs.

“Margie says very odd things, too, like ‘I’m sure I saw pop down the street today’. Marg has a continual challenge about where reality is. Sometimes, if she says something, we have to think how to respond in a way that won’t end up in an argument.

“We’re just trying all the time to balance her perception of the world and reality. It’s always really challenging. Sometimes it’s very annoying and frustrating. Sometimes when we go shopping, because she’s paranoid schizophrenic, she’ll insist on counting every item we buy. So we’ll be standing in the Woollies aisle, with people lining up behind us, and she’ll want to count everything we just bought, and she’ll challenge the checkout girl or boy if the docket doesn’t match.”

Another ‘quirk’ Colleen and her family have had to adapt to is Marg’s ‘lack of inhibition’. Colleen said, “She’ll ask really personal questions of the boys, for example, and we have to navigate that fine line between what’s part of the condition and what’s behaviour. She’s a bit naughty,” she smiled, “and does tell tales.

“Yet, I’m also always consciously trying to maintain some respect: she is, after all, my older sister. How do you say to your older sister, you have to have a shower now? This caring role is very subtle. I’m not really her mother and guardian, but I am, though not in terms of birth history.”

What about the challenge of working? “On the contrary,” said Colleen. “I would go crazy without work! I really need, and Marg needs, that space—she likes that space during the day when we’re not here. She’s worked her rhythms around ours. Work is more of a blessing for me. Also, the family needs the money. And if I was at home with Marg all the time, it would be too intense for us both.”

Colleen works with an early intervention service and with Vision Australia, and said that her employers were both very aware of the needs of working carers. She said she thought that these days, employers were extremely tolerant, with options like carer leave and flexible hours if needed. “It’s not too different from caring for the kids,” she said.

“But respite is the huge issue. We have found a lovely friend of the family who we’ve organised privately to take Marg out once a fortnight. That works really well. Personally, I haven’t done any research into respite holidays—government-funded ones. One of my sisters is in Sydney, and Marg can stay there from time to time for a few weeks, though we still have to drive her down.”

Colleen said some unexpected blessings from having Marg around were all the memories they shared from growing up, and watching Marg’s sheer delight when she wins a little money on an instant scratchie—a pet love.

It has been challenging for the boys, though. “I think I’ve noticed the difficulty most for the youngest one, who is 14. It’s been hardest on him, because being the youngest you tend to be hanging around a bit, and if he’s watching TV she’ll sit with him and be chatting, chatting, chatting. He can’t tell her to shut up: he’s had to work out how to deal with her as an adult who needs to be respected, but not an ordinary one. It’s hard for the boys just to know there’s no point getting in an argument. She’s not really capable of understanding a lot of logic.

“We’ve had to set clear limits. She’s not to go in their rooms: that’s their space.”

Colleen said having Marg around increased the whole family’s awareness and understanding of mental health and the risks of institutional accommodation: “When you put people with a mental illness together, it just doesn’t work. Everyone gets madder.” And Marg feels more secure with her family. “She says to me sometimes, ‘I’d hate living in a home. Don’t you ever think about putting me in a home’.”

 

< Prev   Next >
 

Have You Subscribed?

Our free monthly newsletter has all the latest news.