Ray’s Story… National Carer Week 2022

It’s important for carers to know they are not alone, after all, there are more than 2.65 million carers in Australia! They all have hopes, challenges, happiness, sadness, frustration, and success in their role. We sat down with Ray to learn about his life and journey as carer, supporting his daughter Lene who resides in Afford Supported Independent Living accommodation. We are sharing Ray’s story as part of National Carer Week.

Ray and his wife Jan support their daughter Lene who lives with an acquired brain injury. They have always been great mates and spend a lot of time together.

Pictured: Lene and Ray

How did you become a carer?

Lene had an accident in 1998, caused by an asthma attack that left her with a hypoxic brain injury. My wife Jan and I became Lene’s carers following fourteen months she spent in Liverpool hospital because Lene needed assistance with pretty much everything. We had no idea there was any support out there. I was working full time, so Jan had to do everything for the first ten years after Lene’s accident. I retired on my 60th birthday purely to help Jan, and after only a few weeks, I couldn’t imagine how Jan did it day after day by herself. But then we were contacted by a disability service that arranged for us to have some help, including someone to come into our home and assist with Lene’s personal care in the morning and evening.

It was an adjustment for everyone, not just Jan and I. Lene was an incredible athlete before her injury. She was a member of an unbeaten hockey team that played at a State-level, and a terrific horse rider where she competed in hacking and dressage events. Lene was raising a family of her own and living an independent life and then she was suddenly facing a very tough change.

What does life look like now?

Lene’s physical condition got to a point where we knew we needed more help, and she needed specialised support. It worked out that we were able to get a referral to Afford and from there Lene moved into her home in 2019. She has what she needs here to support her physical needs and she has several good carers who she gets on with.

Unfortunately, life for Lene now, like so many others after a serious accident, has gone from a 10 to a 2. Being in a wheelchair for so many hours each day presents its own problems, such as back pain and bum pain. All Lene can do now is to sit out the front of her home and watch people go past. It’s mind-numbing for her and very sad for Jan and myself.

But Lene and I have always been good mates. I took her to all her horse competitions, and I never missed a hockey match. Even now with Lene living in her own home, Jan and I spend as much time as we can with her.

When Lene lived at home with us, twenty years of our life was just focused on her. But since her move, we’ve been getting into more social activities. I even joined a country music club and Jan has joined some sewing clubs.

What have you learned about yourself as carer?

Jan and myself did what any parent would do, but with Lene’s injury it was very hard. Anyone in a wheelchair will tell you the problems associated with things like travel, shopping centres, finding a table at a restaurant, and toileting etc. At the end of the day, we got through it.

What’s your relationship like with Lene?

Her injury has changed her so much. We probably love the Lene we knew before the accident. We still love her, but it’s different because she’s a different person now.

What are your hopes for the future for both you and Lene?

Looking ahead, I mainly hope we can get physical therapy up and running in Lene’s next NDIS plan review. I would be so happy if she could regain enough weight-bearing movement to be able to get into the car and go for drives (which we both love) and to stay overnight again with Jan and I.

What message would you share with other carers?

Don’t try to do it all yourself. A huge improvement came with the NDIS, so look around for people or organisations like Afford, who can help you. Click here to learn more.