Despene Sattler has spent much of her adult life looking after sick relatives.
Her journey as a carer began in 2000 when her mum was diagnosed with stage four metastatic melanoma. She died in 2002 and then 10 years later her dad was diagnosed with colon cancer and moved in with Despene.
He died five years later and Despene had a short reprieve before her husband of 25 years, former radio broadcaster, Howard Sattler became ill.
Howard died on 11 June of a rare degenerative neurological disorder.
It’s something Despene doesn’t want to face again, but says fate plays a hand that doesn’t give carers much choice.
“I feel as if I’ve been in this job for most of my adult life,” she says.
Since losing Howard, Despene has become an ambassador for Carers WA, which recognises National Carers Week from Sunday, 10 October to Saturday, 16 October.
Despene says the role of carer changes from person to person.
“Mum, dad, husband, it is all different,” she says.
“To be honest you don’t know you’re a carer, it just comes naturally, you just do what you have to do, you look after them and make sure they are fed, you cook for them, you do little jobs for them and take them to the doctors, but you don’t realise you are doing it.
“Then, many years later, when Howard was diagnosed and there were doctors’ appointments and physio appointments, there was the hyperbaric chamber, and I found myself totally and utterly engulfed in what was going on.
“But I didn’t consider myself a carer, the only time I started to think about myself as a carer was when I started to burn out a little bit and I was getting so frazzled, which was where Carers WA came in.
“They were recommended to me and if it wasn’t for them, I would never have made it through.”
The path to becoming a carer is a slow one and Despene says it’s something that happens gradually.
“At some point comes a realisation that the person you are caring for is going to die. I had six years of knowing that,” she says.
Coping with that realisation is difficult.
“I went through a period of severe bereavement, particularly when Howard had the second diagnosis that his illness wasn’t Parkinson’s disease.
“In my head I’m thinking he’s going to have a shake and tremors, he’s not going to be able to walk properly, but we’ll be fine.
“But it didn’t pan out that way because it wasn’t Parkinson’s, it was something far more hideous, called supranuclear palsy, which is literally a death sentence. They say it’s six years from diagnosis to death and typical Howard, he fought the odds and stretched it out every step of the way.”
Despene says it was cruel watching Howard unable to do things for himself, diminishing day-by-day.
“Then you go through a period where it becomes the new norm, and you don’t notice as much, you don’t see the decline.
“People who would come to visit, I could see the look on their faces as they walked into the lounge room to see him sitting on his recliner, and I’d have him up dressed and looking the best I could, and they’d walk in, and you could see their mouths drop – and I don’t blame them because it was a shock.”
Looking back over her journey Despene says that in hindsight she would have taken more care of herself.
“I think I’m suffering the consequences now. I’ve caught the ‘flu because I’m run down and I should have taken more time out for myself.
“That’s not to say that I didn’t take time out, I did put Howard into respite a couple of times and went away with my girlfriends down south, which was good because I knew he was safe if he was in respite, but there’s no other way of doing it, there’s no magic wand.
Despene recalls phoning her Carers WA caseworker and saying she couldn’t sleep and couldn’t eat, felt agoraphobic and couldn’t leave the house.
Her caseworker found respite for Howard, told Despene to pack him a bag and for her to take some time out to rest.
There is a danger that people can feel guilty about putting somebody they love into respite care, but Despene believes it’s something that is important for both carer and loved one.
She says to always check out the respite home, go and have a look at it and talk to the nurses, find out if they have activities and make sure you are comfortable with the level of care being offered.
“The last thing I wanted was for him to be stuck in a room by himself and not mixing with people.
“The respite home had lifestyle carers, who said they would get him out of the room and get him into the main room interacting with other people – and in fact he enjoyed his time in respite – he didn’t want to stay there forever because I promised him I wouldn’t put him in care and that he could stay at home.
Now that Howard is gone, Despene says her next lesson in life is to rediscover her own identity with life after being a carer.
To find out more about Carers WA go to www.carerswa.asn.au.