Health Agenda

Family

How carers look after themselves

Advice from 2 carers on looking after themselves and the ones they love.

Health Agenda magazine
April 2019

Anthony and Emily Kachenko are just 2 of the 2.7 million unpaid carers in Australia. Like many carers they have a very busy schedule, which includes managing all of their son Theo’s weekly activities and appointments. They both work and have 2 other children. While their lives are demanding, Anthony says there is plenty carers can do to maintain their own mental and physical wellbeing while supporting their loved ones.

The Kachenko story

When Anthony and Emily welcomed their first child into the world, like all new parents they were overjoyed. But when baby Theodore was around 9 months old, Anthony had an instinct that something wasn’t quite right.

“You’re at the [parents’] groups and you see other children hit their milestones and you think: ‘Why isn’t he sitting up by himself?’ And [later] all the other children are running around and he’s still commando crawling.’”

The family were referred to a paediatric neurologist who gave a diagnosis of left-side hemiplegia, which is a type of cerebral palsy causing lifelong muscular weakness on one side of the body due to injury in the brain. UK organisation HemiHelp estimates that around half of the children with hemiplegia have other health issues, like epilepsy, visual impairment or speech difficulties.

“Our world changed pretty quickly when our hunch turned into a reality,” Anthony says. “We had no idea what it meant and the comments at that stage [from medical experts] were that he was still very young but that he may not walk.”

Theo, now 4, has learnt to walk and run like his friends through physio, occupational therapy and hydrotherapy.

“It’s been a bumpy journey [but] Theo has gone from strength to strength. And when you look at him, you wouldn’t know there was anything wrong. He can’t ride a bike yet but we have set up some goals for the next few months.” 

A carer’s balancing act

Theo’s activities and appointments are mainly scheduled during the week and managed by Emily. Over the years this has included regular check-ups, swimming classes, speech therapy and various physical therapies.

“For me it’s really important to go to key appointments, especially annual or half-yearly check-ups or tests, but I also want to be involved with some of the therapy so at one stage we put swimming classes at weekends so I could bring Theo,” Anthony explains.

The couple also try to make appointments early in the morning so Anthony can attend, then head to the office afterwards. “We juggle pick-ups and drop-offs between us… Theo has a pretty big week,” Anthony says.

Building a carer support network

Finding the support of the Cerebral Palsy Alliance in the early days of Theo’s diagnosis was life-changing for Anthony and Emily. They were introduced to a director of the alliance by a mutual friend and the whole family benefitted from that assistance.

Theo goes to an inclusive preschool that has a support program for kids with special needs. The family have regular one-on-one sessions with the onsite social worker, who’s been able to incorporate specific activities which target Theo but benefit all the children. Theo’s social worker also gave Anthony and Emily strategies to help manage the emotional and behavioural aspects of a disability.

“Sometimes it can be hard for Theo to regulate his emotions,” Anthony says. “If he can’t do something he gets frustrated so we are learning to help by teaching him different coping mechanisms.”

The family has also found support through a clinic at Westmead Children’s Hospital and Carers NSW.

“The preschool has also been great and connected us to support services. It’s all a bit like Chinese whispers… you find out about more resources as you go.”

Another resource Anthony has found helpful is an online men’s group for carers. “Men don’t talk about things, we bottle it up a bit, so it’s good to be able to share a story or support others,” he says.

Melanie’s story

Melanie Dimmitt’s son Arlo was diagnosed with cerebral palsy at 6 months old. In HCF’s Navigating Parenthood podcast, Melanie talks about parenting a child with special needs. She says seeing a psychologist and making “special needs mum friends” in waiting rooms have helped her manage her carer role.

“I have such a great time with those women because they truly get it. I can be myself and say whatever I want to them,” she says.

She also talks about the importance of taking a break when she can.

“[For] my ‘me time’, I’ll go to the movies, I’ll go to a Barre class, I’ll go for a walk, I’ll read a book, I’ll have a bath... just little things really help like that.”

Joan Bratel from Cerebral Palsy Alliance agrees these are important ways to look after yourself as a carer.

“Having a good support network, whether it be friends or family, is so important. [And] know that it’s okay to take time for yourself. That if you can keep your cup half full, then that is going to make a difference to your children. It is not being selfish and it’s not being uncaring, it’s actually doing what’s necessary to be able to be there for your children,” she says.

Listen to the Melanie’s story in the Navigating Parenthood podcast.

Tips for carers

Anthony Kachenko’s advice for looking after yourself and your loved ones is:

  1. Follow your instincts. “There’s a lot of advice and resources out there but you’ve got to work out what’s best for the person you’re caring for and your circumstances.”
  2. Take regular breaks. “Remember to take time out for yourself, even if it’s just small amounts of time. If you’re not happy, they’re not happy.” He and Emily take turns with the kids so that they each get a chance to have “15 minutes to just sit and have a cup of coffee”.

    Anthony says that regular evening walks and gardening sessions are key to managing his wellbeing. “I find gardening to be extremely therapeutic and it’s a good activity to do with the kids as well.”
  3. Accept help. “Don’t be afraid to accept support if people want to cook a meal or offer to help out. Let them in, because you do need a good network. Try not to push people away despite what you are going through.”
  4. Find a medical team you can relate to. “When working with [health] professionals there needs to be a connection. They need to get along with you and with the person you are caring for. If there’s no connection, it doesn’t work.”
  5. Keep progress records. “It’s very important to keep track of everything. Keep records of appointments and milestones as you go because every time you see a new practitioner they will want to know the history, like when the patient began physiotherapy, or when they first started to walk, for example.”
  6. Schedule time for relationships. Setting aside time with Emily is vital too, he explains. “You need to take time out together. That’s really important because we can sometimes get caught up in the routine, especially with such a crazy schedule. We like to have dinner together, check in with each other and just actually talk about what’s going on in our lives.”

    Maintaining friendships and connecting with your local community also helps, he says.

For carer support, call Carers Australia on 1800 242 636.

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