What is the lived experience podcast, and what is it about?
The lived experience podcast is about creating conversations around mental health and, in particular, sharing stories that go beyond depression and anxiety.
As a child of a single mother with Bipolar Disorder, I found that there is very little content around children who have a parent with a mental illness.
This is despite estimates that 23.3% have a parent with a non-substance mental illness.
This is an astounding figure; however, you will find very little digital content on this matter.
I am trying to create content on this very subject from a broad range of points of view, whether it is interviewing someone who has/had a parent with a serious mental illness or even people sharing their own personal experience with mental illness, as there is a broad range of topics to cover.
There are so many amazing stories out there of carers, young carers, and people who have grown up with a severe mental illness in the family.
My goal is to document these in the hope that when it comes to funding mental health organisations, more money will be distributed to lesser-known organisations such as Satellite Foundation and Little Dreamers, which do extremely important work in supporting the young carer community.
If you can relate to the theme of my podcast, I would love to have you on, and you can contact me here
Sharing your lived experience helps others and yourself!
I have found personally that listening to people's lived experiences of going through a similar situation is the most helpful thing, by a mile.
The show is about getting people to give you real insight into how mental illness affects the unit.
All the guests are inspiring people, and the show's main point is to show everyone that despite how you have been affected by a mental illness, you can succeed in life.
We need more people not to be ashamed of their traumatic experiences with mental illness and to share them to inspire hope in the younger or even older generations.
Mental illness in the family affects you for life in so many ways, and it's a great burden (from my experience) on all those around you.
If you listen to the podcast, you will see first-hand accounts of stories and how the mental health system is severely damaged in Australia despite large amounts of money being thrown at it.
There are many prominent people who would have experienced what many young carers go through; however, they have not shared their lived experiences.
We need these people to stand up to help make a change if you know anyone I should be contacting, please complete this form
The child's and young person's perspective is not taken into account by mental health professionals who treat our family members (or at least this was my experience), and we really need psychiatrists to start involving the children when it comes to treating their primary caregiver.
Our young carers in the community are on the front line when it comes to suicide prevention; it isn't the hotlines!
The young carers in our community need more support from the government, as do the organisations that support these young people.
All statistics show that these people are at a serious disadvantage when it comes to various metrics of future success.
In the picture myself and my late mother, Anne Kleber
My point of view
My opinions are strong; I may not get things right, but remember, it's MY LIVED EXPERIENCE, so I am not generalising everyone with a mental illness in my content, but I am just recounting my experience of what happened to me.
Same with my guests, it's THEIR experience and only theirs to tell.
It may stir certain emotions in you, however, it's nothing personal against your situation.
So please, if you have a mental illness and listen to the podcast, I am not speaking on your situation, only mine.
However, I would love to have you on to share our story so we can educate more people about your lived experience.
Click here to nominate yourself as a guest
What is my lived experience?
If you are wondering what exactly my lived experience is, well, it's what I mentioned earlier.
I was raised by a single mother with Bipolar 1 who didn't manage her condition overly well and ended up in psychiatric wards regularly as an involuntary patient.
Her stays were for months at a time with numerous rounds of ECT (Electroconvulsive therapy) and plied with more medication than what you would find at your local pharmacy.
These involuntary stays meant that I was effectively a ward of the state as we had no family to take care of me when I was younger due to my mother deliberately isolating herself from her 10 brothers and sisters in Warrnambool, Victoria.
This meant staying with foster families and my friend's families eventually, until it was decided that we had to be moved back to Warrnambool for our safety.
Staying with foster families and being forced to go into psychiatric wards at a young age to meet your mother, who is unrecognisable because of the ECT and medication, is a very traumatic experience.
Even though, at the time, I didn't know any different, it was all normal to me.
Being forced to sit in a room with someone who is speaking in practical tongues and telling you about various people in the facility burning her with cigarettes is not an easy thing to hear!
Imagine being 6 years old and being exposed to that.
This is just one minor example of thousands I will eventually share on my podcast in the hope that people hearing it who can relate know they are not alone and never will be.
Even looking back now, it's very hard to reconcile what I experienced due to her mental illness and what other children similar to me would have as well.
I don't want anyone's sympathy. However, I want I do want a change in the mental health system regarding how children are treated when a parent has a mental illness.
From first-hand experience, I was an afterthought to everyone treating my mother.
We were never consulted and her needs for recovery were put before ours many times.
Resulting in what I now know to be significant childhood trauma.
Due to this disregard for me by her treating psychiatrists and psychologists at the time, I still have a very bad taste in my mouth for the whole mental health support network.
I can go on and on about this, so if you want to hear more, make sure you SUBSCRIBE and watch the episodes.
I hope this provides you with enough background to know that the person you are listening to knows a thing or two about this massive subject of mental health.
Please remember that mental health is more than just depression, anxiety, and the big brands.
I really do feel as though the time for awareness of this is over and we need to start focussing our attention on lesser-known mental illness-related issues.
As it affects so many!
If you have made it this far and are still reading this, you have been affected!
So if you have, the best thing you can do is start looking for smaller organisations like the Satellite Foundation, for example, one that works with kids who have a parent with a mental illness.
These are massively important organisations that are actually changing the future for young people. However, have you heard of them?
Probably not, and that's because these big-brand machines seem to be the authority on mental health when they absolutely are not!
I am not going to name names, as big brands are doing great on the awareness front.
However, as I have elucidated above, mental illness is so much deeper than just personal depression and anxiety.
If you can relate to this, please contact me or even appear on my show as a guest.
We need to start sharing stories of normal everyday people who live great lives despite growing up in these tough situations.
You can also read the Channel 9 news story on the podcast here
Now, who is the host?
My name is Joel Kleber, 36 and I live in Melbourne, Victoria.
I do have a personal brand website (Yes, I know, I know) if you want to learn more about me outside of this.
How is my mum now? (Update 2021)
Lastly, how is my mum now? Well, she is not good.
Just two years ago, I had to decide to place her in a nursing home because she kept falling over at home and just couldn't look after herself.
I am her medical guardian so the pressure was on me from various places to make the call.
Even though she didn't want to go (who would?) I made the call with her consent as it was for her own safety.
When I went to visit her on a weekend she had a significant fall in the home where I had to call the ambulance, if I wasn't there who would have known what would have happened to her.
In the last two years, she has steadily declined and is only 63!
She has recently been diagnosed with atypical Parkinson's disorder, sub-nuclear palsy (Steel Richardson Syndrome) and early-onset Dementia.
I will never have the evidence for this claim. However, the amount of ECT over the years and medication, in my opinion, definitely did bring this on. I am not angry about it, however, this is the harsh reality of severe mental illness and it does shorten lifespans.
I try to speak to my mum daily, and whilst hearing her voice is traumatic for me, I know it's good for her, which is why every day, I have the nurses at the facility call me.
Anne Kleber (Left) and Joel Kleber (Right)
Update on my mum (2022)
The final days of palliative care
Unfortunately, my mother passed away on 07/02/22
My mum was made palliative around four weeks before she passed away.
During this time, I left my job and made sure I visited her every day from 9 AM to late every night with my wonderful girlfriend (now wife) supporting me with my daily visits to Lyndoch Living.
However, prior to her being made palliative, there were various emergency hospital visits, with me making the trip down every time to be with her.
These times in hospital were extremely tough as I thought it was the end each time with really not much clarity from doctors.
This is not their fault, but it's due to the lack of research on the condition of progressive supranuclear palsy (PSP).
This horrid condition is something I do not wish on anyone's family, as it's really hard to witness the decline of someone you love.
During the four weeks, my mum eventually lost her ability to eat and talk, this was extremely hard to witness especially when she lost her ability to speak.
My mum's last words to me were 'I love you' which sums her up really, she had an unwavering love for me and everyone she knew.
She also had a mountain of visitors and well-wishers from her family and other people who cared for her.
She was not alone in the last four weeks and had visitors pretty much every day.
For me, the number of people who are there for you in your time of need shows you how much success you have in life.
Seeing the other residents there who had no visitors at all for weeks, my mum's having as many people there for her in the end just showed me how much of a special person she was.
Dying alone would be horrible, and I really do not wish it on anyone from seeing this firsthand, so make sure if you do have someone you love who has a terminal condition, make a bloody effort to see them as much as you can!
Even though it was hard for people to see her in that state, in this scenario, you have to remember that you need to put your feelings aside and be brave enough to support the person, as it was 100% about them at that time.
Many a tear was shed, and I still don't really know if my mum knew what exactly was wrong with her.
However, I made sure I said everything I needed to say 1000 times to her, which consisted of saying, "I love you", "You are the best mother ever" and "You're my hero in how you treat everyone with love, as I cannot do that."
In her final weeks, my mum knew that everyone loved her, and that's the most important thing anyone can give as a gift, as she gave that gift to so many people.
I am not going to lie, I cried every day seeing her in the state and especially witnessing things like the bed lift and her face of terror when being winched up from her bed into a chair.
Being there for the last rites being read was also very hard to see. However, my mum was so brave the whole time.
I only witnessed her cry once when I put her best friend from Perth on the phone to talk to her, who was seriously distressed about my mum's condition as she had no idea about the seriousness of it.
My mum was content with what was happening as she was an extremely religious person, and I so became one during my time with her as I knew that would comfort her.
However, I do not believe in any God.
How can you, after seeing someone you love, be inflicted with a rare disease after all she has been through and the type of person she is?
If anything, what happened to my mother has made me seriously question why anyone would hold a religious belief as to why anyone would believe in such a cruel creator is far beyond me.
There is only so much that you cannot prepare for with palliative care, and there is no playbook.
Especially in the final days, when breaths seriously slowed down and you thought that the end had taken place multiple times, only for another breath of life to start again after what feels like an eternity.
However, my one piece of advice is that you forget about work and whatever other responsibilities you have to make them the priority.
You will not regret that decision, mark my words.
You just have to be there with the person, hold there hand, play some music, talk to them, put the TV, just be there!
I strongly believe that my Mother's PSP was brought on by the sheer amount of ECT she had experienced over the years.
There is no other reason for it; we do not have any trace of this horrible disease in our family.
I can probably never prove that, however, the brain is not designed to take the repeated use of ECT over decades!
I understand that ECT was necessary to treat my mum and get her back to look after me, however, at what real cost?
Could she have stayed in the psychiatric ward for longer and they spent more time adjusting the medication?
Was that a possibility?
My only regret is that I didn't go down sooner, I should have gone down when she was originally diagnosed with PSP which was roughly 5 months before she passed.
So my advice for you is that if you have a loved one with a terminal issue, stop whatever you're doing and go to them!
My mum was truly my hero, and I told her this in the final days.
To put up with and raise me was no easy feat, and contrary to popular belief amongst my friends, I turned out OK!
Her love for me was unmatched in this world, and she gave me everything she had despite her mental illness.
She really did do the best she could, even though I didn't always think this way.
My mum loved everyone she came into contact with and was just so positive about what everyone was up to and doing.
I am certainly not like this and wish I could be more like her in this regard.
Her impact will stay with me and others for the rest of our lives.
Even as I write this now, I tear up because I recall those final days, which were the toughest in my life by a mile!
However, being there for her when she needed me most was and will always be my greatest achievement.
Rest in peace, Anne Veronica Bushell nee Kleber.
Love your son, Joel
My Eulogy and tribute to her can be viewed here
Life Update 2024
A lot happened to me in 2024, and to be honest, I still haven't fully processed my Mother's passing, and I don't think I ever will.
I am currently working on a book about it all, as I do want to create something to honour her legacy and also shine a lot on this issue.
Since her passing in 2022, I used to get very intense flashbacks and also feel a lot of regret.
However, these have slowly passed and are not as frequent.
Onto the positive.
I ended up marrying my wife in 2024, and we also welcomed our little girl Avangeline (Ava) Kleber) into this world.
Both were great moments in my life; however, that's when the loss of someone is felt the most.
It's always been my dream to be a father and selfishly correct the wrongs from my past.
I couldn't have chosen a better wife and mother to create a family with.
The podcast hasn't been as frequent as I like, due to burnout more than anything else.
However, if you would like to be a guest, please contact me via my website form.
