For Mish Baker’s family, the lockdown in Melbourne lasted much longer than it did for most. Mish is immunocompromised and falls into the high-risk category for COVID-19, which meant that her, and her children, were in lockdown for a full nine months with no reprieve.
Mish lives with disabilities and multiple health challenges, among her diagnoses are level 2 Autism, Spondyloarthritis, Fibromyalgia, ME/CFS and suspected Ehlers Danlos. She is also the full-time carer for her children, three of whom are on the autism spectrum.
Mish’s need for physical isolation from the outside world this year has meant that much of the existing support she received to help with her caring duties had to be cut or moved online. Mish says that she’s been experiencing extreme burnout, with the intensity of her challenges this year piling up to an overwhelming degree.
“I’ve found lockdown has greatly exacerbated my personal difficulties and has made everything so much more challenging for me,” she told Women’s Agenda recently. “Burnout has left me with even less energy than I usually have, and makes even the smallest task feel insurmountable at times.”
Reaching a crisis point after the sudden passing of her mother, Mish reached out to the government funded Carer Gateway for support.
She found it to be straightforward and supportive and has since received emotional and practical support – everything from counselling sessions to meal deliveries and a new laptop. It was just what she needed to be able to cope with her exhaustive caring load and breathe just that little bit easier.
“We do such an important role in providing care, receiving support doesn’t make us weak, it enables us to be stronger and be even better in our roles as carers,” she said.
Below, Mish was generous enough to share with Women’s Agenda what the past nine months has been like for her, and also offers some very on point advice for other carers who may also be feeling like they’re reaching their own crisis point.
How has some of the practical support you’ve now received enhanced your quality of life this year?
This year has been particularly challenging for my family. Being immunocompromised, lockdown in Melbourne lasted for a full 9 months for us as I’m in the high-risk category. That meant all the usual supports we access for my son via his NDIS plan had to be cancelled or moved to being online.
This put the full weight of everyone’s needs back onto my shoulders, which is extremely difficult. Even more so when I’m bedridden 2-3 days a week.
Having meals delivered had a huge impact for me. Instead of the daily dinner battle on top of everything else, I was able to “heat and eat”, removing what is one of my most challenging daily tasks. The end of the day is when I’m most in pain and exhausted, so I’m extremely grateful for not having to worry about that for several weeks.
The laptop was a huge game changer in so many ways. I’d been trying to do everything on my phone as my desktop computer is 15 years old and just can’t do what I need any longer. Now, I can access everything I need quickly and simply – and actually see what I’m doing more clearly.
It has also enabled me to access my digital art once more. I haven’t been able to create art in a long time, and being able to do so helps me cope enormously. I’m so excited to be able to create artworks again!
What advice would you give to other carers who may feel like they are reaching a crisis point and are not sure who to turn to?
Accessing supports can feel overwhelming and scary. Often we have a fear of being judged for struggling, or even a fear of having our kids taken away due to not being able to do everything ourselves. Our load as carers is much higher, and much heavier than the average family – it’s easy to lose sight of this.
Agencies such as the Carer Gateway are there to help, not judge. It is so worth pushing through it all to do that *one more thing* in contacting them. I didn’t think I could manage it as I felt so overwhelmed, but making it happen was worth the energy I spent in doing so as it eased the pressure for several months, which let me breathe and cope better.
If you can’t reach out yourself, have a friend or family member make that first call on your behalf. If you can’t call, email. In the long run, that small amount of additional stress will ease the weight on you and give you the chance to recuperate, improving your ability to care for yourself and your loved one/s you care for.
We do such an important role in providing care, receiving support doesn’t make us weak, it enables us to be stronger and be even better in our roles as carers.
Burnout has been an issue for many people during the pandemic, but for carers – especially those in lockdown for long periods of time – the demands have ongoing and intense. Have you personally dealt with burnout this year?
I’ve had, and am still dealing with extreme burnout currently. As a carer who also has disabilities, this year has been particularly difficult and exhausting. Amongst my diagnoses are level 2 Autism, Spondyloarthrities, Fibromyalgia, ME/CFS and suspected Ehlers Danlos. I’ve found lockdown has greatly exacerbated my personal difficulties and has made everything so much more challenging for me. Burnout has left me with even less energy than I usually have, and makes even the smallest task feel insurmountable at times.
In the middle of lockdown, my Mother passed away which was even more challenging as she passed in NSW. Being in VIC, I wasn’t allowed to see her in hospital to say goodbye or attend the funeral. That had an enormous effect on me, sending me spiralling downwards, barely making it through each day. It’s something I am still dealing with but I’d have been in an even worse position if not for the counselling sessions Carer Gateway provided for me, they’ve made all the difference in enabling me to continue on every day.
If you manage to muster any extra energy and/or time, what are some things you like to do to take care of yourself?
I can’t always go out due to my disabilities, so the things I do to take care of myself are simple things. I make sure to sit and enjoy my coffee every day, instead of drinking it on the run. I try to participate in carer activities when I’m able to as these give me a break and contact with other people.
I’m an avid reader, but don’t often have time to read so I switched to audibooks, meaning I can listen to books even if I can’t sit to read them. It’s really helpful to be able to skip back a chapter if I realise I haven’t heard it properly due to kids or whatever I’m doing at the time. It also makes doing mundane tasks more enjoyable.
I love to create my digital artworks, and to spend time in my garden. Recently, I even managed to do some sewing – something I haven’t done in years. That was a huge accomplishment and felt so good to do.
What would you like other people to know about what it takes to be a full-time carer?
Being a full-time carer is something you can’t ever fully understand unless you live it. On top of all the usual demands of life and caring for a family, you have so much else to do. I have to get my kids to 5+ therapy appointments a week. I have to ensure the right child is ready for each one, liaise with the therapists and keep them in the loop about how things are going and ensure we get regular reports written for the NDIS. I have to keep support worker schedules working so they don’t clash with appointments, and keep track of every child’s needs, medications, etc as well as trying to remember my own.
We have regular trips to the hospital – last week’s trip involved paramedics, my 20-year-old being in a neck brace for 9 hours, scans for suspected neck and head injuries due to multiple collapses, anxiety and worry about if their spine could be broken, and me being awake for 28 hours straight. When we were finally able to go home, I had to get straight back into caring for my youngest child and ensuring he made it to his appointments as well as doing his schoolwork. The trip before this, my 20-year-old was unconscious for 45mins after collapsing & woke in the ambulance where they had a massive panic attack as they didn’t know where they were. It’s frightening and takes a toll in a big way on all of us.
People think having NDIS makes life a breeze – I’ve often had comments like “Oh, I wish I had a cleaner” made to me, as if it’s unfair we can access one. I’d give up having a cleaner for the simplicity of normal life in a heartbeat! Having the cleaner coming to our home doesn’t mean I get to sit and do nothing – it means I have a little more energy to put into caring for my kids, providing for their needs and trying to keep on top of the endless requirements that are piled on me every day.
People don’t see the endless paperwork, the chasing invoices, dealing with billing, ensuring we have the right reports for reviews and more that is involved to enable our kids or loved ones to be supported.
The having to repeat our story endlessly to worker after worker, re-training new workers to know how to provide support appropriately. Sourcing equipment that matches our kids needs, ensuring we have the right products on hand at all times.
They have no idea of the frustration and stress of not being able to find accessible parking and trying to help our loved one access a wheelchair in a standard parking spot where we can’t get the chair to their car door or having to go home without doing what we wanted/needed to do as there’s no accessibility for the wheelchair after parking. The 20+ extra steps it takes just to head out the door. In my case, ensuring I’m on high alert to catch my 20-year-old every time they collapse, even in a wheelchair, so they don’t hit their head on the ground yet again. Trying to catch them in a way that won’t injure me or tear my ligaments yet again.
People judge harshly if they see the meltdowns, the struggles and the challenges that come with having kids with disabilities, yet so little is done to try to understand their needs and what we as carers are trying to do to enable our loved ones to have a life of value and happiness.
Being on high alert because you know someone will be horrid and judgmental every time you take your kids in public is exhausting. Living being devalued yourself while fighting against your loved one being devalued is a never ending battle. Dealing every single day with people who refuse to provide accessible communication or services.
The level of care and energy we put into helping our loved one process and access life and cope day-to-day is far beyond anything the average parent or individual faces.
If you know someone who is a carer, support them. Love them. Offer to help or give them a break, it just may be the difference between making it through the week or falling in a messy heap. We put on a brave face and hide our struggles, but I promise you they’re there even if you can’t see it.