This month, Patty Kikos interviews Debbie Atherton, who has worked as an occupational therapist, and in Aged Care assessments. In our chat today, Debbie opens up about one of her 3 beautiful daughters who has a condition called Ehlers Danlos Syndrome. Her story highlights Debbie’s resilience, attention to detail and impressive organisational skills when balancing work and her caring role.
Debbie:
She's now studying veterinary nursing online via TAFE as well, and it's definitely an area that she's passionate about, is working with animals, so it's really good to see her going down that line.
Patty:
Oh that’s amazing. Does she love cats like her mum does?
Debbie:
Absolutely she does! {giggles}
Patty:
And are you 2 part of the reason that you're still fostering those 5 kittens?
Debbie: {giggles}
Haha, the 5 kittens had to go back last week to be desexed and adopted, but we've taken on another one.
Patty: {giggles}
Of course! I love this!
Debbie:
Of course! We swapped them for another cat. So, yes, she definitely loves the cats. They're definitely her favourite.
Patty:
And her TAFE have been very supportive, haven't they?
Debbie:
Oh, they have been very supportive of her absolutely and the online TAFE has been a great option for her, in terms of meeting her study needs because she can do the work when she's able to and again do it in short bursts, which is sustainable.
Billy:
From the Carer Gateway at the Benevolent Society, we welcome you to, Carer Conversations with your host Patty Kikos.
The Care Gateway is the Australian Government national care hub and provides reliable services, support and advice especially for carers.
This podcast is where we share interviews with guests that have specialized knowledge to help support carers to look after their emotional, mental and physical well-being.
We are recording on Aboriginal country, on lands which were never ceded. We acknowledge the traditional custodians and cultural knowledge holders of these lands and waters. We pay our respects to Aboriginal elders, past and present.
Always was, always will be.
---
Patty:
Hello dear listener and welcome to another episode of Carer Conversations. Thank you for joining us and for sharing your lovely feedback. We love hearing from you, and we are very motivated to share stories from other carers that will not only inform you, but also inspire you in your caring role
Today’s episode is with Debbie Atherton who has also shared some helpful information on another episode, of how an occupational therapist can benefit someone who is struggling with their mental or physical health, in the disability and in the ageing sector.
The death of her dad when she was very young made Debbie aware of the difficulties and different experiences that people have, and this motivated her to be part of the solution in improving the lives of others.
Debbie also has a strong sense of service and justice which has influenced her direction in life. These interests, influences and personal qualities led Debbie to become an Occupational Therapist. More recently, her passion has transitioned to supporting Carers. This came about because of her personal experiences as a Carer & also from realising the unmet needs that many Carers have.
In our chat today, Debbie will be opening up about one of her 3 beautiful daughters who she cares for. Her story highlights Debbie’s resilience, attention to detail and impressive organisational skills.
Debbie:
I guess the other thing that we do in both OT and the aged Care Assessment services is look at what types of services and supports are available in the local area. That might help the person that we're assessing.
Patty:
And I also understand that you're a carer for your daughter, are you able to tell me about her health conditions?
Debbie:
Yes sure. My 22yo daughter has a condition called Ehlers Danlos Syndrome.
Ehlers-Danlos Syndromes is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls.
There’s actually a hypermobility spectrum and Ehler Danlos sits between midway and to the end of that spectrum. People on the lower end of that spectrum will have hypermobile joints and no other health conditions related to the hypermobility.
As you move up the spectrum, you have people who have Ehlers-Danlos which shows as hypermobility and other associated health conditions such as Myopericarditis, Gastroparesis, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder and more.
Those even further up the spectrum have a more serious or life-threatening versions of Ehlers Danlos such as Vascular Ehlers Danlos which can weaken your aorta and other arteries in your body, and if they rupture, it can be fatal. There are other ones which cause cardiac valve disease or abdominal organ rupture.
There are actually 13 different types of Ehlers Danlos. My daughter has the version where she has the hypermobility and the associated health conditions, known as Hypermobile Ehlers Danlos. Her joints are loose and sublux or dislocate every day which causes pain. She’s under a Rheumatologist and Pain Specialist for it.
Patty:
Debbie, were you already qualified as an OT when she was diagnosed, and does your qualification and experience help you when caring for her?
Debbie:
Yeah, so I was already qualified as an OT, and it's been a real blessing to have the knowledge and experience behind me to support her. Having some knowledge also of how the health system works has been really helpful.
Patty:
Yeah, because that can be tricky to navigate when you're in shock yourself about your loved one. Having a diagnosis like that.
Debbie:
Absolutely! And just knowing where to go to get support, can be difficult, yeah, but yeah, certainly having that knowledge of the health system has been amazing.
Patty:
Yes it’s an advantage, that's good, because I understand that Ehlers Danlos Syndrome can also cause other conditions. Has this been the case with your daughter as well?
Debbie:
Yes definitely. She has Myopericarditis which means her heart lining and heart muscle get inflamed which causes chest pain and so limits what she can do.
She also has Postural Orthostatic Tachycardia Syndrome known as POTS. With this condition, blood tends to pool in her feet and only a small amount gets to her heart. It causes dizziness and for her heart rate to go very high when she goes from laying down to sitting and from sitting to standing or when she is walking. It limits how far she can walk. She needs to ensure she gets adequate fluids but drinking a lot of fluids upsets her Gastroparesis. She’s also had to make lifestyle changes to accommodate it. She’s under a Cardiologist for the Myopericarditis and POTS.
Patty:
Goodness that means it's a lot of responsibility to care for yourself..
Debbie:
It is very, very important, absolutely, as not only does she have the Ehlers Danlos, Myopericarditis, and the POTS, she also has Gastroparesis which means her stomach & bowels are sluggish. Food tends to sit in her stomach & has trouble passing into her intestines.
Patty:
Does she get a lot of bloating?
Debbie:
Absolutely so big, cause the food sitting in her stomach. Her stomach's often full feeling full and so yeah apart from the bloating. It also causes her to feel nauseous or vomit. It gives her gastric reflux. Likes she gets stomach pain. It also causes food intolerances and there can be a lack of absorption of nutrients as well.
Patty:
Yeah, so would she get IV fluids to counterbalance that?
Debbie:
Not the IV fluids, but because she's always been underweight and had further weight loss, she now needs to have nasogastric tubes put in every three to four months, so she can have feeding through the tube to boost her weight and nutrition.
But it also helps to get fluids into her body that way, yeah. So, her weight will go up and then the NG tube or the “nasogastric tube” will be taken out for a few months, and then her weight will decline again, and then the NG tube has to be reinserted and that process will continue for the rest of her life.
Patty:
So it's four months in and then two months out, to give her a rest. Is that how it works?
Debbie:
Yeah, roughly about two months, that's right, so it works out that throughout the year, she probably has to have it in about 3 or 4 times.
But she also needs to be careful about what she eats to ensure she gets enough protein, but not too much fibre. So her diet is, mostly soft food, and she also needs to have supplement drinks too, and she's under a gastroenterologist who monitors that very closely.
Patty:
Yeah, so does that mean as a carer and also as a mum who cooks for the family, you've got to be able to cook special meals for her as well.
Debbie:
That's right, so often it is special food for her and other food for the family. But I guess on top having gastroparesis, she's also vegetarian, so we've got to add that into the mix as well, but I've also become vegetarian, so it makes it a little bit easier. So, I often have the same foods as her and the family have come to the point where they're starting to enjoy vegetarian meals as well. So often they will have the same as what we're all having.
Patty:
That's a positive. That makes it easy, doesn't it?
Debbie:
It does, it does, or sometimes we'll have the same sort of meal, but they'll have the meat, and we'll have the vegetarian version. So, we try and find ways to make it easier all round for the family.
Patty:
That's good.
Debbie:
And my daughters also got another condition. It's called common variable immunodeficiency, so it's known as CVID for short, and it's an immune deficiency disease, where the body is not able to produce a normal amount of of all types of antibodies.
So, it puts her at increased risk of infection. She's had immunoglobulin replacement therapy, which involves an infusion once a month for about 3 to 4 hours. However, it does cause her to feel unwell, so it's been ceased for now, but it will be considered again in the future if she gets any major infections.
Patty:
Is this one of the reasons why you're still conscious of wearing a mask around the office and in other public places?
Debbie:
Absolutely. I guess her lower immunity is part of the reason, but I also have low immune system so that's the other part of the reason. We just don't want to catch COVID in particular. But also, there's so many other viruses around that we just can't risk catching those either.
Patty:
It's totally understandable. Does your daughter have any other conditions?
Debbie:
Yeah, so there there's a couple of other conditions. She also has a Sub ependymoma which can be related to the Ehlers Danlos. It’s a slow growing benign tumor on the ventricle wall in the brain where the spinal fluid flows. It can cause headaches and confusion. It may contribute to her migraines. She has Botox and medication for them. She’s under a Neurologist. With the Sub ependymoma, they're just monitoring that to see whether it grows or how quickly it grows.
Patty:
Has the Botox given her a reprieve?
Debbie:
The Botox has been great in terms of managing her migraines. She still does get migraines and has other medication that she can take. You know, if a migraine comes on, but at the Botox has certainly decrease the frequency and the severity of the migraines.
Patty:
OK.
Debbie:
She also has a Chiari 1 malformation which can be related to the Ehlers Danlos. It’s when the section of the skull containing a part of the brain known as the cerebellum, is too small or is deformed, and puts pressure on and crowds the brain. It can squeeze the cerebellum through the hole at the bottom of the skull. Some people need major surgery for it. Luckily, she doesn’t. Due to her Ehlers Danlos Syndrome, it would not be recommended.
Patty:
Yeah, that's understandable.
Debbie:
She also has Fibromyalgia which is a long term health condition that causes constant muscle and joint pain & tenderness, fatigue, trouble sleeping, brain fog causing impaired memory and difficulty concentrating, headaches, and emotional health impacts. The Fibromyalgia is managed by the Rheumatologist.
That’s not the end of it. She has also has Obsessive Compulsive Disorder which causes her to have unwanted thoughts and fears that lead to repetitive behaviours such as double checking all the door locks before bedtime, cleaning things repetitively and re-organising things multiple times.
She also has Contact Dermatitis & Asthma.
Patty:
Yeah, that's a lot I feel for her and I'm really honoring her bravery and her courage that I hear about through you. Hmm, how do you find that you best support her OCD tendencies?
Debbie:
It can be a real juggle sometimes. I want to support her so that she isn't so stressed by the obsession or compulsion, but sometimes the timing of what she wants to do isn't ideal. Yeah, so it's a fine balance, but to help her out I try and check the doors are locked on her behalf. And she's satisfied when I tell her that the doors are locked, which helps her.
Patty:
Oh, that's good.
Debbie:
I also help her reorganise things like her room, or another room. However, the difficulty is I guess that if the time is not convenient for me, for example, if I've got work, I can sometimes put it off by giving her a time when I will be available and asking her to distract herself with something else. In the mean? Time and that often works. Yeah, but she doesn't like to be late for any appointments or commitments either, so we need to plan well enough in advance to make sure we get there with plenty of time.
Patty:
I know that you also don't like to be late for appointments.
Debbie:
{giggles} I don't like to be late for appointments either. So they're just some of the ways that I try and support her with those CD tendencies.
Patty:
What impact does all of this have on her life?
Debbie:
It had a very big impact on her life, so when she was at school, she had to have a lot of time off. She ended up not being able to complete her school at the mainstream school, so she completed her last few years of high school at Sydney Distance Education High School.
But even then, she had difficulty completing the work because she was in pain, felt nauseous or had a migraine or was fatigued or had brain fog all because of the multiple doctor's appointments as well. Because of the joint dislocations in her fingers, she couldn't hold a pen for long, so her work needed to be completed online and in short bursts with regular breaks. But even then, it was a struggle
And it's impacted her education since. She wanted to study at university, however, the drive to and from university was too much for her. And she wasn't able to keep up with the timetable due to her health or to walking the distance required between the lectures. The university were very accommodating though through the disability Support services. I can't speak highly enough of them. They were so, so good, but in the end, the university wasn't sustainable for her.
Patty:
But she made that choice, didn't she?
Debbie:
Yes, she did make that choice.
Patty:
That's empowering.
Debbie:
But I guess it was still based on her health conditions, sure, but yes, she had to make that decision. Yeah, it's not a decision I was able to make for her.
But it was definitely something she had to come to terms with herself and make that decision for sure. But since then, she's completed an online TAFE course and then a face-to-face short course with work experience as well, via the RSPCA. She's now studying veterinary nursing online via TAFE as well and take.
Patty:
Oh wow, it's amazing!
Debbie:
Yeah, yeah, it's definitely an area of that she's passionate about, is working with animals, so it's really good to see her going down that line.
Patty:
Does she love cats like her mum does?
{both giggle}
Debbie:
Absolutely she does! hahaha
Patty:
Are you two? Part of the reason that you're still fostering those 5 kittens?
Debbie:
Ohh, the 5kittens had to go back last week to be desexed and adopted. But we've taken on another one. Of course, swap them for another cat. Yes, yes, she definitely loves the cats. It's definitely her favorite animal.
Patty:
Of course, I love this. And her TAFE have been very supportive, haven't they?
Debbie:
Ohh they have been very supportive of her absolutely and the online TAFE has been a great option for her in terms of meeting her study needs because she can do the work when she's able to. And again, do it in short bursts, which is sustainable for her.
She actually works one shift a week, as a receptionist. The opportunity to work has really increased her social connections, and added real meaning to her life, by enabling her to feel like she's contributing to society, so she sometimes has to cancel work though due to her health, however, she tries to make it up on another day when she's feeling well enough.
And her workplace have been amazingly supportive, so you know, it wouldn't happen without such a supportive workplace.
Patty:
Yeah, it's very important.
Debbie:
And she also does volunteer work for the RSPCA so they have shifts of about 3 hours. Which is manageable for her, so even though she comes home exhausted, it's important that she still does that.
Patty:
That sounds sustainable.
Debbie:
Yep, because it is an area of passion for her and it's a way of contributing which she wants to do.
Patty:
And she received the disability support pension, doesn't she?
Debbie:
Yes, in the last couple of years she's received the disability support pension and she's also got one of the mobility parking passes so that she can park in the disability spots as well.
Patty:
What does life look like? For you as her carer.
Debbie:
I’m happy to be her primary carer and to support her. She is such a joy and inspiration and she's very resilient as well. I think that's something that her health conditions have really, you know, strengthened in her. It can be hard seeing what she’s going through and sometimes I feel like I’m not able to make a huge difference, but I’m doing what I can.
Patty:
I bet you make a big difference.
Debbie:
Yeah, I hope I am, and she is certainly appreciative of it as well, which really helps. But plans can change at short notice depending on how she feels. So sometimes I might need to pick her up from work because she can't drive home, even though it's only a 7-minute drive from home. Sometimes that can be too much. After doing her five-hour shift.
Patty:
Gosh, I can relate to that.
Debbie:
But also she can become sad all of a sudden about her health conditions and need that comforting and uplifting, so it's important for me to be there to help support her with that. Also, because of the meals that she has and the fact that they're so specific in terms of being soft food and vegetarian, a lot of planning needs to be put into what meals and snacks you can have.
Patty:
Ah yes, I see,
Debbie:
And it's also important to make the snacks things that are easy for her to get, so she doesn't have to do a lot of the preparation. Yeah, but still nutritious as well. I also often need to take time off work to help her, or to go to medical appointments with her. I'm very lucky though that my team leader and managers at benevolent society are very supportive of that and of me.
Because there are frequent medical appointments and other appointments for tests or treatments, and they can be costly. And that's on the top of the cost of her medications because she's on multiple medications. But luckily now she's on the disability support pension. She has a concession card, so that definitely helps with the cost of her medical care.
Patty:
Oh, that's a bit helpful then, isn't it?
Debbie:
Yeah, and also, I try to plan my days well to keep in a routine because I find it helps me achieve more by saving me time.
Patty:
Well, I want to talk a little bit about that because one thing I do admire about you having worked with you for three years now, is that you have a very generous spirit so I can see that it's in your DNA to be of service, just like you mentioned about your mum influencing you in this area, but you are incredibly well organised. How do you do it? And do you have any secrets to share with our other carers?
Debbie:
Well, I try to do certain tasks on certain days of the week and everyone in the household knows those tasks are done on those days, such as laundry on Thursdays and Saturdays. So, they prepare their own laundry for me to do so that does make it a bit easier as well, having it done on set days and everybody helping out.
I also fold clothes as I take them off the line and sort them into piles for each person as I take them off the line, so they're ready to give to each person in the household. And we sat down and made a plan as a family to share the load in the home. So, everyone in the family has at least one day a week where they make dinner and wash up.
Patty:
Yes, this is very good. So you have a schedule?
Debbie:
Yes, we have a schedule, and it sits up on the wall, so everybody sees it, and everybody's reminded of it. And also, everyone in the household has a chore that they're responsible for. So, whether it be cleaning the bathroom or vacuuming and washing the floor or another task, we share the load together.
Patty:
And do you find that you have to really manage it, or does everyone really step up and do their bit?
Debbie:
Most of the time they're pretty good, particularly with the meals. They're pretty good with that but sometimes with the other tasks it might take some subtle reminding.
Patty:
Yeah, I bet.
Debbie:
But they're great and it's wonderful that they're willing to help out, and it makes life at home a lot easier for everybody.
Patty:
As a carer as well. Yeah because we can sometimes go into that savior mode or that martyr mode of like I need to do everything, Umm, actually we don't.
Debbie:
Yeah, well it was that way, and my daughter with the health conditions was the one that said “mum, I think you need to let everybody else in their family do a little bit more as well”.
Patty:
She's amazing.
Debbie:
And so that's when we had the family meeting and we gave everybody a choice as to what activity they would like to do, what task in the house they wanted to do.
Patty:
I like how you called it, an “activity or a task”, and not a chore, that's the OT in you, isn’t it?
Debbie:
Haha! Definitely, but I think giving the family members a choice made it seem like they were able to take on that responsibility a bit more, and be happy to take on that responsibility rather than telling them what to do.
Patty:
Yeah, it's more empowering.
Debbie:
Yeah, absolutely more empowering and I'm definitely one for that. You know, I like the idea of giving people choice.
I think it's so important. So, the other thing is that you know, given that I don't work on Thursdays. My daughter tries to make her medical appointments on Thursdays where possible, to try and minimise the amount of time I need off work.
So that's one other way of planning. So mostly we cook food in batches, so there's some leftover for another meal, whether it be for lunch the next day or another night in the week, so sometimes it gets frozen for us to have on a Saturday night. Which is what we call “fend for yourself night”.
Patty:
This is so inspiring.
Debbie:
And when the person who was supposed to cook, sometimes they might be away or out. We can use those frozen meals then.
Patty:
You've got a seamless Plan B that's soo good, and in addition to what you've just shared, is there any specific advice that you might like to share for carers as well?
Debbie:
I think it's important to have time out for yourself and to look after yourself, so find something you're passionate about and make it happen. I like to garden and spend time with family and friends and our cats. Having activities or interests that you love doing does help to decrease stress and increase optimism and emotional well-being and positivity.
Patty:
Yeah, that's amazing. Deb. I think it might be time for your rapid fire wrap up questions. What do you think?
Debbie:
Sounds exciting.
Patty:
What is something you are most proud of?
Debbie:
I think I'd have to say getting married to my darling husband and having a wonderful family together. But in fact, I'm actually proud of my whole family, really, because they're so amazing and my biggest supporters.
Patty:
Yeah, and for our listeners out there. Debbie actually has three daughters that she's very proud of and they're beautiful. Now what were you afraid of as a child, if anything?
Debbie:
Well, it might seem strange now given my role as a partnership specialist, but I was actually afraid of people and talking in public.
Patty:
Really?!?!?
Debbie:
Yeah, really. I was a very shy child. I guess over my lifetime I've had to challenge myself to get out of my comfort zone to enable me to grow and develop the skill of speaking with people and to be able to do public speaking. No, you would not guess it now.
Patty:
You would never guess that now. What's a fun fact about you or a party trick that you're well known for?
Debbie:
Probably a fun fact would be that I've travelled around the world by myself when I was younger. I went away for a whole year. It was one of the best experiences of my life for many reasons.
Patty:
Yeah, it's a very special thing to do.
Debbie:
It was. Absolutely great memories.
Patty:
I can relate if you could live anywhere in the world, where would it be and or why?
Debbie:
It would definitely have to be Australia really. Yes, and after travelling around, seeing so many countries, definitely it comes back to Australia.
Patty:
You're qualified to say, actually.
Debbie:
And even the people that I met overseas who have been to Australia, they keep saying Australia is the best country and it is. It's got a wonderful climate and an endless number of beautiful sights and that’s one of the things I like. I think that people tend to have an optimistic attitude to life. Yeah, but we also have a great healthcare system, and better support systems for people who are disadvantaged or have a disability or who are aged or who are carers compared to the rest of the world.
Patty:
OK and I've got my final question. Do you think you'd make a good spy?
Debbie:
I'm not sure about a good spy, but. Because I don't have a very good poker face.
Patty:
Yeah, neither do I, I wear my heart on my sleeve.
Debbie:
Yeah, me too, but I think I'd make a good detective given my role in assessments and the observation of people.
Patty:
Yes, plus your attention to detail!
Debbie:
And attention to detail, absolutely.
Patty:
Debbie, you are amazing! Hearing your personal journey as a carer has been incredible and I'm grateful to you for sharing your personal story. I hope you found this helpful and inspiring because I know I did! Subscribing to us and giving us a 5 star review really helps us get these important messages to the people who need to hear them the most.
If you know of someone that would also benefit from Debbie's wisdom, feel free to forward this to them. Until we chat again, be, well, take good care of yourself and make sure you're getting enough rest. Bye for now.
Billy:
If you are caring for a relative or a friend who has a disability, a mental health condition, a life limiting health or medical condition.
Or they are frail because they're getting older. Please contact us at Carer Gateway on 1800 422 737, or look us up on www.carergateway.gov.au
And if you are a carer, you're allowed to take time to look after yourself. You are just as important as the person you take care of.