Strategies for Carers in Uncertain Times

The global coronavirus pandemic has brought significant challenges particularly for those with children with developmental and epileptic encephalopathies.

In this episode of SCN2A Insights we are joined by Heather Renton of SWAN and Sue Lenzi, Mental Health Social Worker to discuss strategies for carers during the pandemic. 

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Guest interview:

Heather Renton is the Chief Executive Officer and Founder of Syndromes Without a Name (SWAN) – Australia. SWAN provides information and support to families caring for a child with an undiagnosed or rare genetic condition. Heather is the mother two children, one of whom has a rare genetic condition. Heather is a passionate advocate for families who have children with undiagnosed and rare genetic conditions.

Heather received a Highly Commended in the Service category at the 2017 Premier’s Volunteer Champions Awards. Heather is one of the co-authors on the report “An Ounce of Prevention”, which captured the value of early community engagement and co-design of projects.

Sue Lenzi is a Mental Health Social Worker with nearly 40 years experience, over 10 of those in private practice. Sue started in Child Protection and the Justice Department and then spent 20 years with Anglicare working with homeless youth.

Sue is based in East Kew, Victoria where she provides counselling for a variety of clients, children and adults who are experiencing difficulties in their lives. For over 10 years, Sue has passionately facilitated a playgroup which caters for families who care for children with disabilities and chronic health conditions.  

Regular Hosts:

Ms Kris Pierce RN MHSc MWellness, is a rare disease advocate and mother to Will who has SCN2A. Kris has held a range of board, project management, advocate and consumer representative roles and has been instrumental in working with local, state and federal governments to secure funding for multi-million dollar projects. Kris is highly skilled in building teams to work together collaboratively and is a co-founder of Genetic Epilepsy Team Australia (GETA) and SCN2A Australia, and a RARE Global Advocacy Leadership Council member.

Follow Kris on LinkedIn or Twitter.

Dr David Cunnington is a sleep physician and father to Will who has SCN2A. He is director of Melbourne Sleep Disorders Centre, and co-founder and contributor to SleepHub. David trained in sleep medicine both in Australia and at Harvard Medical School in the United States. David’s clinical practice covers all areas of sleep medicine and he is actively involved in training health professionals in sleep. David is a regular commentator on sleep, both in traditional and social media.
Follow David’s posts on sleep on Facebook or Twitter


Intro: Welcome to SCN2A Insights bringing you the latest research and clinical updates on SCN2A and genetic epilepsy from around the world.

Dr. David Cunnington: Welcome to this episode of SCN2A Insights and welcome, Kris.  

Kris Pierce: Thank you.

David Cunnington: So you’ve really taken the lead with the next couple of episodes. What were you trying to do?  

Kris Pierce: I’m trying to provide information and support for families who are facing a challenging time during the COVID-19. We support families, children with complex needs whether that’s a disability or they are medically vulnerable or they have both. And our families are facing unprecedented times with the coronavirus and we just wanted to get some information together to support both the parents and the children through this process.

And today, we’ve got Heather Renton who is the CEO of SWAN with us, which is Syndromes Without a Name, who also represents this same kind of burden with vulnerable children.

Heather Renton: Hi, Kris. Thanks for having me on the show. Syndromes Without a Name supports families who have got children with undiagnosed and rare genetic conditions. And as Kris says, this is quite isolating time for everyone, let alone when you’ve got a child with an undiagnosed or rare genetic condition. It’s very hard to find other people who have children with the same genetic condition to link up with.

And one of the things we like to do with SWAN is trying to make people face to face if we can to be a support. Obviously, we can’t do any face to face catch-ups at the moment so we’ve had to move a lot of our events online, our virtual support, and make the experts series just to try and make life a little bit easier for our families so they realize they are not alone because we find having a SWAN family, there’s a lot of anxiety anyway, there’s confusion, it’s frustrating, and it’s even more so in this COVID-19 pandemic.

So I’d like to introduce Sue Lenzi. Sue Lenzi is a Mental Health Social Worker with nearly 40 years of experience, over 10 of those in private practice. Sue is going to talk about strategies for carers in unpredictable circumstances. Sue, how do parents cope with the unknown? What strategies can you suggest?

Sue Lenzi: Hi, Heather. Look, one of the things to be aware of is this is new territory for all of us. We like to think that we can control our circumstances and it has really pulled the rug out from under us. One of the main things to pull from it is don’t try to use the old rules to manage this situation. Accept that it’s a new norm with new challenges and difficulties, many of which we don’t have a skillset for.

So looking too far ahead is really unhelpful. Just live one day at a time. And if you get through that day, congratulate yourself on doing a great job.

Kris Pierce: Sue, I actually felt like that a bit today with my son who just kept looking at me with his puppy eyes going, “What are we going to do now?” So I’m thankful for getting through today.

Heather mentioned in the intro that a lot of our families face a lot of social isolation anyway as parents of children who have extra needs. So this is going to further exacerbate that. How do we keep connections and what are some of your tips to stay connected?

Sue Lenzi: Look, I think one of the things is that we are absolutely bombarded with a 24-hour news cycle. It never ends and it’s always negative with the obligatory little bit of fun stuff at the end. I think we need to stay informed about the government directions because they are going to impact how we live life. We are not allowed to go on holidays and all those sorts of things. So we do need to listen to something for a short period of time every day.

In terms of our connections, I think we’ve got to make time to catch up with friends. I know friends of mine have done virtual dinners and my own street has a WhatsApp group where we can’t talk to each other except via that group. If there’s someone who is lacking toilet paper, somebody else might drop it off on their doorstep or something. So different acts like that can make a big difference for us all I think.

Heather Renton: It is hard sometimes to structure your day and remain physically and mentally healthy when all else and our children’s activities have been cancelled. Have you got any suggestions on how we can do this, Sue?

Sue Lenzi: Establishing routines is going to be really important. Routines are something that we all live our lives by. We’ve had them to get our children to school in the morning, to get ourselves ready for work, making the school lunches is a routine. And I think those sorts of routines are really important to combat mental health issues for all of us in the household. They are the things that shape our lives and I think that we need to continue them but modify them a bit.

Make sure that you set up some regularity around mealtimes and bedtimes and study spaces as well. Continue to give your kids a sense of safety and security when the world doesn’t feel particularly safe or secure. It also means that they’ve got an idea of what’s coming next. And for kids, particularly kids on the autism spectrum who have been totally thrown by this lockdown, that’s a really useful thing to think about that keeping focus and not heading down that rabbit hole of what if, what’s going to come next, and having a routine to stick to is quite grounding. It can bring you back.

Physical activity is also really important. We all know how exercise releases endorphins and lift our mood. That has never been more important than now. I think children respond to exercise also but we’ve got to be a little bit creative about how to get them to participate. Things like a pillow fight will be just as energetic and exciting for a kid as telling them to go and do star jumps or something, but probably a lot better received.

Think about how you can dress it up and the sort of things you can do. I know that there are lots of – The Wiggles I think have something about doing exercise and there are yoga and Pilates classes online and games of chasey.

One of the ABC presenters the other day, I saw he had organized backyard Olympics for his kids to try and keep them entertained.

So there are lots of different things that you can try. And I think they’re all really important to be considering because it’s not the days of structured exercise anymore.

Kris Pierce: One of the things you mentioned then Sue is trying to go to bed at a certain time and keeping that regular routine. With all the anxiety or fear of these unknowns that we’ve sort of been dealing with, it put some people’s sleep off so it’s causing them to have sleep issues and wake up during the night. Have you got any great tips around sort of trying to get a good night sleep?

Sue Lenzi: I think in terms of anxiety disrupting sleep, it’s really important to acknowledge that it’s normal to have anxiety right now. We don’t know what’s coming and we are getting told a lot of really negative things. I think again, try not to watch that 24-hour news cycle for the whole day, things are changing quickly but seriously, not that quickly that you’ll lose touch if you’re not glued to your screen.

We know that this virus is highly infectious but we also know that only 5% of cases apparently end up in ICU and far fewer people than that die. So the odds are pretty good that we are going to survive. And the lockdown is there to protect most of us and particularly, our vulnerable citizens who are more at risk.

I think also addressing the practical issues around sleep. Sleep is a habit and if you break the habit, you’ve got to reestablish it. So have a look at getting a regular routine for going to bed.

Try certainly during the week to go to bed at a similar time every night and get up at a similar time every morning, try to avoid caffeine late in the day, and try and schedule in some exercise to wear yourself out.

Make sure your sleep space is comfortable and dark and safe. Try meditation. There are guided sleep apps, the Smiling Mind, which addresses anxiety.

Heather Renton: What about for our parents who are really worried about the vulnerability of their children, which would probably be everyone listening to this podcast, should we let support workers into the house? What are the pros? What are the cons? What’s your view on that?

Sue Lenzi: It’s a really difficult one. There’s no real correct or blanket answer to this one. It comes down to the level of need I think. Certainly, I know all home care staff are having – continuing to receive training on infection control and safety practices. And if those procedures are followed, it’s sort of the best practice model. There’s nothing else that we have in our toolkit except those measures.

Many families are going to find it too difficult I think to function without the assistance of carers. The physical demands, the emotional demands of trying to manage some of our children is very – there are very high demands. And so, you’re going to need that circuit breaker of a carer to come and take over some of those tasks. Cancelling all carers is going to lead to increased pressure on managing those needs even though less foot traffic in your home is going to obviously cancel out some of the risks. So it’s really going to be a case by case, situation by situation response to that question. But I do know that lots of parents are taking on a heavier burden at this time because they feel so frightened about inviting people into their house.

Heather Renton: It’s really difficult. You’re doing your best.

Sue Lenzi: Yeah.

Heather Renton: I know personally we’ve started virtual catch-ups with one of our carers but my daughter only lasts an hour and then she would just run off or she would run off and go to the toilet and not tell the carer because she is very impulsive. But we are sticking with that for the time being. And it means I now got an hour just to me without worrying about her and I can usually hear what’s going on in the background so yeah, it’s working well. So far, so good. Touchwood.

Kris Pierce: Yeah. We’ve implemented the virtual as well because we have decided not to have support workers in the house for the time being. Will is probably managing maybe a little bit better. He can cope up to two hours and we’re just constantly setting tasks which I think will come in handy when it comes to going back to school or to the programs. But that’s going to add a whole new level of burden on our family where not only they’ve got them home so much more with less help but they are also having to try and school the kids as well. So I think we’re just going to have to keep navigating those things as they come and work out what’s best for our families not only for the child but for the whole family.

Sue, many of our families will have some posttraumatic stress syndrome because they’ve got children with acute health issues who may end up in hospital either in the past or on a regular basis. And so, they’ve got ongoing health concerns for their children anyway so they’re going to be worried about ending up in hospital during this time. But also, how do they manage that fear of either ending up in hospital for a regular – their child’s normal health conditions or with the coronavirus?

Sue Lenzi: I do think it’s about educating ourselves about the reality of this illness and accepting that it’s normal to be afraid. I think we’ve got to use the skills and remind our parents of all the skills that they’ve already developed in managing the health of their loved ones because this is not an unusual fear that these parents have. It’s just heightened at the moment.

Being sensible and following the lockdown laws is really important. Be vigilant about infection without being over the top and try to dwell on what you see not what might happen because there are hundreds of possibilities about what might happen but there’s only one definitive thing that is happening at the moment. So it really is about always pulling yourself back from the precipice of imagining what’s going to happen when I get this.

When you find yourself experiencing high anxiety, stop and ask yourself what has triggered it? Is it that your imagining an event or that something is actually happening? And do grounding exercises. One that I have always found really useful when I’m being in a hospital waiting for one of my kids to be seen is having a hair tie around my wrist and just flicking it occasionally, not to cause pain. It’s not that, but just to remind myself where I am. And that brings me back from the realm of my imagination taking over and just reminds me, right, I’m sitting in this chair with my feet on the ground and at the moment, there’s nothing dreadful happening.

Don’t live in the future. We don’t know what’s going to happen, any of us. And particularly at the moment and we can’t predict. You have to have some faith that you will deal with what does happen in the same way that you’ve already dealt with so many other challenges.

The other thing is, if nothing is working if you can’t bring yourself back from that level of anxiety, don’t hesitate to contact your GP because they will refer you to see a counselor. There are lots and lots of telehealth options available now so you don’t have to leave your house.

Kris Pierce: We’ve spoken to Sue today about some strategies for carers in unpredictable times or circumstances. What were your key takeaways from that?

Heather Renton: We’ve just got to bear in mind that everyone is going through the same situation to various degrees obviously, depending on your children’s needs. Don’t be so hard on yourself. Cut yourself a bit of slack. You can’t change the outside situation so you just really got to make the best of it and do what you can to support yourself both physically, mentally, keep you sane through all this, and try to have a positive outlook on this. It’s not all doom and gloom. Try and find the positives in it as well.

And Sue has given us a lot of good tips for managing anxiety so I think we could do some practical things to make our day a little bit easier.

Kris Pierce: One of the things for me is don’t be afraid to ask for help. The support is there. The government has made mental health a really high priority in general but through this time. So if you need it, ask for it. And support groups like SWAN will also help guide you in that direction as well. So if you need help, ask.

That was a great podcast. And hopefully, families will get something out of this. Thanks for joining us today, Heather.

Heather Renton: Oh, thanks for having me. It has been great.

David Cunnington: So you did a really great job with those interviews, Kris. Thanks for organizing that.

Kris Pierce: Thank you.

David Cunnington: If you enjoyed the podcast, subscribe to the podcast via any podcast app and leave us a review. You can also follow SCN2A Australia on our social media channels at @SCN2AAustralia. Thanks a lot.

Kris Pierce: Thank you.

Outro: This podcast is not intended as a substitute for your own independent health professional’s advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider within your country or place of residency with any questions you may have regarding a medical condition.