Why does this podcast exist?

What is the lived experience podcast and what is it about? 

Joel Kleber host of The Lived Experience Podcast

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 by way of 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 serious mental illness in the family and my goal is to document these in the hope that when it comes to funding mental health organisations that more money is distributed to lesser-known organisations such as Satellite Foundation and Little Dreamers, who 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 them going through a similar situation to be is the most helpful thing by a mile.

This is what the show is about, getting people to give you a real insight into how mental illness affects the unit. In saying that, all of the guests are inspiring people and the main point of the show is to show everyone that despite how you have been affected by a mental illness you can succeed in life.

We need more people to not be ashamed of their traumatic experiences with mental illness and to share them in order to inspire hope in the younger or even older generation.

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 them.

If you listen to the podcast you will my 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 a large number of people in prominent positions who would have experienced what many young carers go through, however, they have not shared their lived experience.

We really 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 persons 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 care giver. 

Our young carers in the community are on the front line when it comes to suicide prevention, it isn't the hotlines! Lets get that clear! 

The young carers in our community, need more support from the government as do the organisations who support these young people in our community as all statistics show these people are at a serious disadvantage when it comes to various metrics of future success. 

 

Joel and Anne Kleber

In the picture myself and my late mother, Anne Kleber

My point of view

My opinions are strong and 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. 

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? 

Joel Kleber with his mother Anne Kleber - The Lived Experience Podcast

If you 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.

Due to these involuntary stays, it 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 for us 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 sympathy however, I want I do want is change in the mental health system on 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 go through the episodes. 

I hope this provides you with enough background as to the person you 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! I guarantee 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 Satellite foundation for example who is one which works with kids who have a parent with a mental illness.

These are massively important organisations 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 reach out to me or even be a guest on my show.

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, 34 and I live in Melbourne, Victoria. You have read briefly about my past but what do I do currently? 

I am currently the CDO of the Jim's Group which is Australia's largest franchise and also host various media initiatives with Jim's Group (Jim's Mowing, Jim's Cleaning) founder, Jim Penman.

I am very lucky to work closely and practice every day with the Jim, Yes, he is real!

He has even called me a personal friend and I consider him one as well. Now, if you read about Jim, you will know why that is sort of a big thing.

I am even in both of his books. It wasn't always that way, I started like 2 days a week paralegal and worked my way up from there whilst completing a law degree part-time over 10 years!

It's something I don't even need, however, it made my mum happy to know I was doing it, so it was worth it in my eyes. 

I don't mean this to be a brag although it pretty much is, however, I am in a good position now despite my circumstances which is the main thing to take away.

I am also a keen guitarist and if I had my time again, I would have moved to LA when I was 18 and studied guitar at GIT.

However, maybe in another life that may happen.

I am also a sports nut and have a fantastic girlfriend who has truly been the best person I have met.

Outside of that, I hope to own my company one day so that I have the freedom to really reap the efforts of how hard I work.

Even though I love my job, your always building someone else's dream and not your own! 

How is my mum now? 

Lastly, how is my mum now? Well, she is not good. Just 2 years ago, I had to make the decision 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 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 and palliative care 

Unfortunately, my mother passed away on 07/02/22 

My mum was made palliative around 4 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 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 progressive supranuclear palsy (PSP).

This horrid condition is something I really do not wish on anyone's family as it's really hard to witness the decline of someone you love. 

During the 4 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 4 weeks and had visitors pretty much every day and this for me shows you how much success you have in life is the number of people who are there for you at the end in your time of need. 

From seeing the other residents there who had no visitors at all for weeks, for my mum to have 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's 100% about them in 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 need 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" 

My mum in her final weeks knew that everyone loved her and that's the most important thing anyone can be given 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, there is no playbook. 

Especially, in the final days where breaths seriously slow down and there were multiple times you thought that the end had taken place 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 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 as she could, even though I didn't think this way all the time. 

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 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, to be 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 here can be viewed here

Final Notes 

I hope you check out the podcast and don't feel shy to write me a joelkleber@gmail.com

Or you can reach me via my contact form 

 

 

About the Host

Joel Kleber Profile Photo

Joel Kleber

Host

Hi, I am Joel Kleber the host and creator of the lived experience podcast. The goal of the podcast is to create more conversations on mental health that go beyond depression and anxiety. There is so much more to mental health! My experience is growing up with a single mother with Bipolar Disorder 1 and it was an experience, to say the least! However, I have always been frustrated by the lack of content that there is online regarding this and other mental illnesses. My show consists of interviews and also solo episodes where I recount experiences to really emphasise the point that you are not alone out there and many people are affected by mental illness in the family unit.