When she was a younger child, Jasmin didn’t really understand that her dad had an illness that was going to have a massive impact on her life

It wasn’t until 18 months ago, on her fourteenth birthday, that Jasmin suddenly realised that her dad was very ill indeed.

“I had made a pinyarta for my birthday party and I wanted him to hang it up for me outside under the pergola.  He could hardly stand up and his arms were very weak,” she said.

“I had never seen him so pale and lethargic and I was worried he was getting the flu. That’s when he told me that he had multiple sclerosis and that it was progressing rapidly.

“I didn’t know what MS was but I was shocked that he could have had a disease for such a long time and never told me about it.”

Jasmin is an only child and lives alone with her dad since her mother died when she was four years old.

She has always had a great relationship with her dad, even though both have lived pretty much independent lives under the same roof.  Jasmin has been busy with her academic studies, studying the flute and playing touch football. She has had a very active social life and spent many weekends away at friends’ places, so somehow had not really noticed the steady deterioration in her dad’s condition.

“Dad said he didn’t tell me about it because he didn’t want to worry me. There is no cure for MS and he figured that once it got bad enough for people to notice, then he would tell me. It came as a great shock once I started researching it on the net and found out just how destructive the disease can be.

“I cried for about a week but dad told me he didn’t want me to get so sad and that we had to make the most of every day from now on, and to look at the world with a different set of eyes.

“He wasn’t going to be a ‘victim’ and he didn’t want me to be one, either. Initially we spent a fair bit of time planning for the end stages of his disease – whenever that might be – and making sure I had a solid plan about who I would live with if he died before I was old enough to live independently. He made sure I knew where all of the legal documents were regarding the house and his will and all of that kind of stuff.

“It was very confronting at the time and it made me feel quite scared, but once it was all sorted, we could put it all behind us and just concentrate on living. Eventually he had to give up the business as he was no longer able to work.”

Jasmin is in Year 10 at high school and looking forward to going to university one day. Her day begins at around 6am when she gets up to prepare her dad’s special breakfast – a fresh organic fruit smoothie with added vitamins, minerals and enzymes which staff from a support agency will give him when they arrive around 8.30am to get him up and shower him, as he is now confined to a wheelchair and has limited independent movement.

When she gets home at the end of the school day, she will bring in the washing, which support agency staff may have put out in the morning, and go down to the local shopping centre to get any supplies needed for the day. Agency staff do one major shop a week and help with house cleaning tasks.

Jasmin prepares and cooks the evening meal, making sure there are enough leftovers to ensure her dad can heat a plate of food in the microwave for lunch with help from a neighbour who generally pops in at lunchtime each day.

Jasmin and her dad often watch TV together at night, or hire a DVD; sometimes they read poetry out loud – especially Dylan Thomas, who is a favourite of both.
At night Jasmin uses a hoist to transfer her dad into bed after helping him with his personal care needs.

“Shaving is still the one thing I can’t manage very well – but dad reckons I give him less nicks than the agency staff, so he prefers me to do it for him. It’s always a laugh. Sometimes we laugh so much we cry.”

Jasmin doesn’t really know what the future holds. She lives one day at a time and makes the most of her time with her dad. At times she feels exhausted and overwhelmed, but overall, her dad’s positive attitude and good nature buoy her up and make the load easier to bear. The family are investigating getting more services involved in meeting their support needs.

She hopes he lives long enough to see her learn to drive the family car and be able to take them out on trips together.