Patty Kikos interviews Mitch Gibson, who shares her journey of loving, caring and ultimately losing the love of her life to pancreatic cancer. Not only did Mitch sell her yoga school to care for Mark, but 2 years later, Mitch has found a new calling in life, that not only helps her to heal her wounds, but also holds a space for others who are navigating their own grief by becoming a grief counsellor for the Violet Initiative. GUEST: Mitch Gibson - https://www.instagram.com/mitch.gibson.therapies/ Violet Initiative - https://www.violet.org.au/ SOCIAL MEDIA: Follow Patty on Instagram Follow The Benevolent Society on Instagram Follow Carer Gateway on Facebook Follow The Benevolent Society on Facebook CREDITS: Host – Patty Kikos Producers – Patty Kikos and John Hresc Sound Engineer – John Hresc GET IN TOUCH: Carer Gateway is proud to offer emotional and practical services and support for carers with the aim of making your life easier. You can call us on 1800 422 737 to find out more about peer support groups, counselling, coaching, online skills courses, tailored support packages, emergency respite, other government supports, as well as tips and information, or visit our online home at www.carergateway.gov.au Got some questions or thoughts for Patty or the team? Email us at cgconnections@benevolent.org.au and put ‘Attention Patty’ in the subject line. ACKNOWLEDGEMENTS: The Benevolent Society acknowledges the Traditional Owners of the Land we have recorded this podcast on, the Gadigal people of the Eora Nation. We pay our respects to their Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander cultures.
Patty Kikos interviews Mitch Gibson, who shares her journey of loving, caring and ultimately losing the love of her life to pancreatic cancer. Not only did Mitch sell her yoga school to care for Mark, but 2 years later, Mitch has found a new calling in life, that not only helps her to heal her wounds, but also holds a space for others who are navigating their own grief by becoming a grief counsellor for the Violet Initiative.
GUEST:
Mitch Gibson - https://www.instagram.com/mitch.gibson.therapies/
Violet Initiative - https://www.violet.org.au/
SOCIAL MEDIA:
Follow Patty on Instagram
Follow The Benevolent Society on Instagram
Follow Carer Gateway on Facebook
Follow The Benevolent Society on Facebook
CREDITS:
Host – Patty Kikos
Producers – Patty Kikos and John Hresc
Sound Engineer – John Hresc
GET IN TOUCH:
Carer Gateway is proud to offer emotional and practical services and support for carers with the aim of making your life easier.
You can call us on 1800 422 737 to find out more about peer support groups, counselling, coaching, online skills courses, tailored support packages, emergency respite, other government supports, as well as tips and information, or visit our online home at www.carergateway.gov.au
Got some questions or thoughts for Patty or the team? Email us at cgconnections@benevolent.org.au and put ‘Attention Patty’ in the subject line.
ACKNOWLEDGEMENTS:
The Benevolent Society acknowledges the Traditional Owners of the Land we have recorded this podcast on, the Gadigal people of the Eora Nation. We pay our respects to their Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander cultures.
Billy:
From the Carer Gateway at the Benevolent Society, we welcome you to, Carer Conversations with your host Patty Kikos.
The Carer 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:
My beautiful carers and all our fabulous listeners who support us each month, hello and WELCOME!!
I’m going to get straight into this episode, because I have sooo much to unpack with my extraordinary, clever, resilient and still grieving guest, Mitch Gibson.
But before we begin, I really need to let you know of a TRIGGER WARNING. We will be discussing pancreatic cancer and death – so if these topics are a little too close to the bone for you, and you’d prefer to sit this one out – we totally understand.
Feel free to come back, when it’s a little less raw for you.
Since caring for and losing her life partner 2 years ago, Mitch has spent time grieving, soul-searching, recovering and restructuring her life.
Formerly an owner of a yoga school, Mitch sold her business to care FT for Mark when he was first diagnosed. Understandably drawn to what feels comfortable and safe, she currently works part-time in a Cheese and Wine Bar, while studying for a Diploma of Counselling.
Her growing interest in the survival / recovery and therapeutic space, has renewed her previously lost sense of ‘purpose’ and ‘identity’. She is also passionate about advocating for improved death and grief literacy, & wants to use her voice of experience, so that we as a culture, can learn to do grief better.
Mitch is proud to have recently graduated as a Violet Guide, which is someone who offers free phone support to those caring for Palliative patients, and those suffering grief, bereavement and loss.
Mitch, 4 years ago, you would have described yourself as a FT yoga teacher with your own business, living with your great love Mark. How would you describe yourself today?
Mitch:
Opening with a scary question:
Feels like this is someone else’s bio, it’s surreal.
OK Here goes:
I’m a widow in her late 50’s, in her 3rd year of grief - with one foot in her past, and one foot in a future she never wanted, though needs to create and move into.
I can’t stay stuck here forever.
Patty:
I kind of feel like I just got sucker punched and thumped in my chest. Whose idea was it to start with that question anyway?
Mitch:
Wooopa
Patty:
Yeah, buy a girl a drink first. So, you and Mark were together for 17 years. At what point did he get sick?
And what happened soon after his diagnosis?
Mitch:
So, Mark was diagnosed at age 52 with stage 4 metastic, or terminal pancreatic cancer.
So, life not only tipped upside down, but it shook violently.
So, at the time he worked in the arts and was managing Jersey Boys, the musical Australian tour. But within a month he was in weekly chemo treatments and on his first clinical trial, so had to quit Jersey Boys.
Coincidentally, I was finally clearing out his office just the other week and I found his Filofax diary and it really struck me, you know, how the transition from normal life to terminal cancer patients looks on.
From meetings, rehearsals, media calls, etc to endless doctor's appointments, treatments, bloods, pathology, supportive treatments, scripts, pharmacists, et cetera for him.
It's a full time job having a terminal illness, that's for sure.
And As for me, other than coping with an abrupt escalation of 24/7 anxiety, I launched myself into research every spare moment that I had as I realised I had to let go of my business.
Patty:
It sounds like this was a big coping mechanism for you as well doing all.
Mitch:
That research, you know what, in hindsight, it probably was. The stats for pancreatic were not great.
Because Mark wasn't a candidate for surgery at the time, his chances of surviving five years was around 5%.
Patty:
So at the time of him being diagnosed to you, finding out about that, what what was that interim like a week or something?
Mitch:
Yeah, a few days. You know, you get you this diagnosis that lands in your lap and you just kind of go, “Uhhh”, you're spinning and then you go, “OK, what do I need to know”? It's about information. Information is crucial with this.
Patty:
OK.
Mitch:
So even though his oncologist told us outright in the our very first meeting that he couldn't save him.
Though with treatment and the remote possibility of a clinical trial that could somehow crack the code, they could probably buy him a little more time.
A cure was never spoken of as possible, and I became obsessed with those 5% survivors. I needed to know. What are they taking? How are they doing this? We wanna be in that group.
So we were lucky. We had a great run for the first year. The treatment and those eight weekly scans were showing tumour shrinkage and stability, which is what you need to hear from a scan.
We had to believe that we were going to be in that lucky 5% of five year survivors.
Unfortunately, with stage 4 pancreatic, you're stable until inevitably you aren't. It's a disease that's programmed to kill humans. Just after the one-year mark, the disease began to spread into another area of Mark's body.
Patty:
Ohh Mitch, you became Mark's carer. Was it a year after his diagnosis? At what point did you realise he had become palliative?
Mitch:
I want to pause here hun and define Palliative - like many people: we confused Palliative (provision of relief of symptoms & suffering caused by a life-limiting illness) with Hospice (short-term, end of life care).
Patty:
That's a very relevant distinction for our carers. Thank you for that.
Mitch:
Mark was receiving palliative treatment for a year before he passed away, and Hospice treatment for about a month - including 10 days in Palliative Care ward together 24/7, I was able to stay with him overnight, leading up to him leaving.
His Palliative treatment was mostly the complex management of his pain by a specialist doctor, different from his Oncologist. Then as his pain management needs escalated, we’d get regular visits from the community nurses who’d bring us supplies such a syringes, needles, swabs etc for injectable pain medication; they taught us how to insert a subcutaneous butterfly needle (which is like a canula), how to draw-up the syringes with morphine and how to safely inject him many times a day.
Patty:
I bet you NEVER expected how to learn to do that!!
Mitch:
It’s this whole other world and skillset, and you don’t even have time to shake your head and go “wha.. WHAT?!?”
Patty:
You just have to do it!!
Mitch:
Yeah!! I feel I want to answer your question by saying that in spite of this disease trying to kill Mark for a solid 26 months - he was the king of pulling up. We were so determined, and so driven by hope; dying simply wasn’t an option. It wasn’t spoken about, it was just, “OK - what else can I research? Who’s surviving this, and what are they taking? What do I need to convince the doctor’s to let us try now?”
We always had Plan B, C, D etc up our sleeve … and so were completely disoriented when we were told there were no more treatment options, and they were moving him onto “comfort care” - about a month before he left.
Patty:
That’s what they call it?!
Mitch:
Yeah, right? It has a nice feeling ‘comfort care’, but we know what it means, we know he’s about to die.
To move from being only in the business of keeping him alive, to literally having that cancelled that one day in the oncologist's office, was as surreal and traumatic as the first day of diagnosis; like re-living it again.
Patty:
They say that ‘hope is always the last emotion to die’. I imagine you experienced being re traumatised often during this journey. What was the greatest change for your relationship? Some carers experience losing their loved one suddenly, others say that at one point, all intimacy dies as does any capacity for care or empathy for the carer, or it feels as though you are looking after your child. But there’s always something more nuanced in the middle.. what was it like for you?
Mitch:
This is such a juicy question. Yes, there was trauma. I'm gonna park that for another time, but I wholeheartedly believe that love never dies, long after hope has love is still there.
I think there's a lot of common ground. You know, that comes with being carers, though everyone's journey and relationship with their unwell person is so different.
Patty:
Absolutely.
Mitch:
Yeah. And for our relationship, we were so fueled by hope. Mike was born completely self sufficient and independent. We both kind of were.
And perhaps that's what happens when you meet your person at age 40. He was also a very private person, and I'm a sharer, and that didn't work so well in the beginning.
Patty:
You mean at the beginning with his diagnosis cause he didn't want people to know and you wanted to get help?
Mitch:
It's more like he didn't want cancer to rule his life. He we had to believe and we were believing that he was gonna be in that lucky 5%.
Patty:
I understand that
Mitch:
Right? and he didn't want cancer to be all that was in our life. Yeah, so you know, one of the hardest parts of the first year of the illness and treatment was, he kind of did it all alone, emotionally, physically, administratively. I kind of felt locked out of the experience.
Patty:
So was that kind of his coping mechanism?
Mitch:
Exactly. So it was my natural urge to lean in and be a part of this awful chapter with him by supporting him. And though it was completely rejected in the first half of his treatment.
He'd reluctantly let me come to his very first chemo treatment, even though I had to sort of sell the concept to him by saying, you know, I had to take notes.
Mitch:
There's a lot of info coming and they told us that yeah, though when I showed up to his second chemo treatment the following week and announced he actually asked me to leave. downstairs in the hospital.
Patty:
Oh wow.
Mitch:
I know right? I sat downstairs I the hospital café and was bamboozled, like I started googling “is it OK to leave your partner with terminal cancer”?
And I was actually really surprised at how many relationships also die with a terminal diagnosis.
All the regular relationship crap that you know you both deal with is completely magnified when you add a terminal diagnosis to the relationship.
Patty:
Ohh sadly because I work in this industry, I am familiar with these stats. They are indeed heartbreaking and statistically they're a grim reality for more women than they are for men.
Mitch:
Yeah, it's impossible to even imagine going through all of that as well. Yeah, right.
So, I'd begun researching and I knew that people were doing interesting things with off label or repurposed drugs and blocking metabolic pathways in cancer treatments, though Mark wouldn't have a bar of it at that time.
His perspective was he was getting great scans. His side effects were kind of well managed or well enough managed. He didn't see the point of me doing more.
And he also didn't want, as I said, as he didn't want cancer to literally engulf our lives. He really wanted to continue living and enjoying life.
Patty:
And did he?
Mitch:
Yeah, we did our best to. There was this intruder. There was always this elephant in the room, and this dark cloud over us, but in spite of that, we did keep living a life similar to our previous life.
And at the time, I kind of heard him and I got it, though I was still anxious and perhaps perceptive enough, you know, to create a plan, B a plan C, something to have up our sleeve for when everything hit the fan. So, you know, we continued and then life and circumstance took over.
That was when I sold my business, and I took a part time job...
Patty:
Do you mind if I interject here with a question?
Mitch:
Go ahead.
Patty:
So, because your business wasn't just your work.
You know, being a yoga teacher was a huge part of your life identity, and it's not like you were just a teacher. You owned a studio.
Mitch:
Yeah.
Patty:
Was it an easy decision for you to sell it? And are, I guess another question is, are there aspects of this former life of yours that you still miss or perhaps even grieve?
Mitch:
Yeah, that's a good question. It was a confusing time, and I made the decision to sell my business about eight months into Mark's diagnosis. And so, there was there a certain amount of circumstance involved with it.
So, in spite of me never really having an exit notion or strategy, the decision was made easier given the escalating yoga competitors in the suburb my studio was in, like when I started my business.
I was one of 2 providers in my suburb and at the time of selling, I was one of 8. I was becoming increasingly disenchanted with a lot about the yoga community.
I've been teaching yoga and fitness for a combined total of 34 years
Patty:
And it had become a very saturated market by that stage happened to it.
Mitch:
Oh Yes. Yeah.
Patty:
We have more yoga teachers qualified per capita than they do in San Francisco. And that's saying something, isn't it?
Mitch:
Oh, good Lord. Yeah, that says it all, and there's just not enough work to go around and you and I could have a whole other podcast about this.
But I was blessed to have a strong reputation in both fitness and yoga, but I was well over the pressure of running a then flailing micro business and constantly being on my laptop when I wasn't on my yoga mat. So, I think the difficult part of the decision to sell was not even having an inkling of what my next serious career would be.
The only thing that was crystal clear was I yearned to just be ‘normal’. I just wanted something where I'd arrive at 9 o'clock, take a lunch break, leave at 5, have weekends off.
I just wanted to be ordinary
Patty:
And recalibrate your nervous system somewhat. You were frazzled.
Mitch:
Ohh, completely. Yeah, completely. Look, having said that, there's a Sanskrit word that you're probably familiar with - “mudita”.
Which literally translates to sympathetic or shared joy here, and I do miss that ‘mudita’ I do miss that that it comes with teaching and mentoring, yoga teachers and teaching restorative yoga, which was my great love.
That restorative lineage is really important to me and the restorative practice literally saved my life and my mental health.
And for the past 3 years it has been the only yoga that I've practiced.
I do miss the connections that I made in the yoga community. Thank God I met some really beautiful humans on yoga mats and many of whom will always be my friends. And yeah, I do miss supporting and holding a safe, nurturing space for my students.
And my next career feels like an ideal extension of that. So we'll get to that.
Patty:
Well, I see you continuing to hold that safe and nurturing space, perhaps just in a different setting to a yoga studio.
You also mentioned that you took on a part-time job in a cheese and wine bar that a friend of yours owns?
Mitch:
Yeah, that's right. Luckily, about 3 months after Mark passed, a lovely friend of mine called me up.
Asked how I was travelling, and he told me that he'd recently bought a cheese and wine bar and would I like to come and work in it with him?
So at the time I was kind of struggling with grief and 2 of my biggies that come with grief, ‘loss of identity’ and ‘purpose’.
We've mentioned it, it really is a big thing that comes with grief. I had no idea who I was anymore or what I was doing. So, the idea of working in this cool little place.
Amongst 2 things that Mark and I both loved, you know, cheese and wine, I thought. How hard can it be right? I'm still working there part time as I study for my next career now.
Patty:
It's not a bad place or a bad setting to be in, while the next aspect of you rebirths
Mitch:
Absolutely. That's it.
Patty:
Did you receive any financial support and were you even aware of the services that Carer Gateway offered at the time?
Mitch:
Do you know what, Patty? I really wish I had have been aware of the carer gateway at the time and I'm kind of perplexed that no one in the system, not my fantastic psychologist, not the community nurses.
Though at long last, one of the social workers from Lifehouse mentioned that support was available, though it was right toward the end of Mark's treatment, which was a peak frantic time.
And I have a very foggy recollection of. I remember feeling kind of weird and annoyed that she was babbling all this complex information down the phone to me. You know, while we were receiving news that really there's no treatment left for mark.
Patty:
When you were beyond your own capacity and limit anyway, yeah.
Mitch:
Yeah! Ohh totally where I was way beyond capacity. You're right. So surely you would think that surely a system could exist within the cancer treatment world where patients and their next of kin can be automatically informed of this level of care were available and these resources at the time of a Stage 4 diagnosis, right?
Patty:
Yeah. You heard it here, folks.
Absolutely. I'm disappointed. I mean, I really wish you'd known about the practical supports that you were very entitled to such as domestic assistance. Personal care services. And along with counselling, coaching and peer support for you. Did Mark's diagnosis and subsequent health deterioration happen during COVID and did it impact you financially cause you just sold your business?
Mitch:
Correct. Yeah. It's, it's so weird. All of the big stuff happened pretty much at the same time
Patty:
2 ‘C’ words simultaneously COVID and cancer.
Mitch:
Yep! COVID and cancer.
Yeah. At the beginning of 2020. So that was the exact same time that Mark's disease was escalating, and things switched from.
“We're doing well” to “the disease is spreading” was when the whole COVID thing started. So, in a hospital situation, you know, when you have stage 4 cancer, you have multiple hospital visits every week when you're.
Patty:
Already immunocompromised
Mitch:
Exactly. So, it can be from once-a-week minimum to seven days a week. So, you know, many face to face appointments moved to telehealth, which was a weird thing. Oncologists who are normally really measured and factual became obviously flustered and dismissive and just, there was an edge. There was an edge that wasn't there before. Vaccines weren't available yet.
Mark was already, as you say, immunocompromised. He was in chemotherapy, and we knew that if he contracted COVID, he wouldn't be able to continue his treatment.
And I wouldn't be able to visit him. So even entry to the hospital several days a week for us was a huge big deal. You know, there were long queues as people who were already stressed and unfamiliar with technology, and the new rules had to deal with this new thing, like signing in. And masks and social distancing. It was a lot.
So that being a really surreal time for the whole world, dealing with all the unknowns that came with the pandemic, we also had a diagnosis to deal with. On top of that.
Patty:
A Terminal one.
Mitch:
Yeah. Yeah. So luckily, we were both put on full time ‘Job Keeper’. The full version of Job Keeper.
And to me, that was given this incredible gift from ‘ScoMo’ to become a full-time carer and researcher for my love. So, we had permission and we now had funding to do this whole ‘terminal illness’ thing wholeheartedly.
Patty:
That was a blessing. You know, actually, telehealth appointments became a blessing as well because so many people were time poor and it also changed the trajectory of my own business because not seeing people face to face means that I can see more people via the phone.
And for our overseas listeners, ‘ScoMo’ was the moniker for the Prime Minister at the time, whose name was Scott Morrison.
Mitch:
That's right.
Patty:
Yeah. So tell me more about that.
Mitch:
So look, as it turned out, with the end when Job Keeper finished early 2021, I realised that I was entitled to ‘Carers Payment’ and ‘Allowance’ benefit and what was formerly known as a ‘Widows Pension’, which at the time was essentially Job Seeker with 4 months grace not having to actually document seeking work.
Patty:
Can we pause for a moment? So Widows Pension. So previously you would have been entitled to that for what I understand to be the rest of your life.
Mitch:
Pretty much, yeah.
Patty:
So you were in a position where you could have you actually did find another job? Yeah, but what about someone that loses someone who was the main source of income, and they're caring for 2 young kids. They're expected to go on Job Keeper for 4 months?
Mitch:
And that was my expectation. I did a bit of research last night and the system can be difficult to navigate online, although it doesn't seem like it here's a whole lot of good options for a woman in that stage.
Patty:
And also for a man, especially when the woman was the breadwinner, like there's no widowers pension or equivalent?
Mitch:
There never was a widower's pension. So I guess if I could offer one piece of advice to carers out there, it would be keep track somehow of dates around what work you did, when you stopped working, you know how many hours you're working and in Australia know that it's not necessarily economically means tested because I know that puts a lot of people off.
When I researched it at the time, it was based on how many hours I was working, which equated to how many hours I would be away from my person and how many hours I would have to offer and to care for my person.
So, it seemed really about the dollar value of what I was doing that was keeping me keeping them out of the healthcare system here.
So, it was then that something just kind of clicked for our relationship and for the first time ever, there was the same page-ness Mark had sort of dropped his guard and let me in.
He'd let me care for him. He'd agreed to try some of this research stuff that I was doing. He let me come to appointments. I know.
Patty:
Oh wow, this is big.
Mitch:
It was huge Patty.
Patty:
He was so vulnerable.
Mitch:
Oh my God.
Patty:
You were so ready to help, and he was so ready to receive, which was untimely before you were finally aligned in that way.
Mitch:
I know it was, It was quite beautiful. Yeah. He finally accepted support from me, you know, and as a stubborn Leo who was born independent...
That was such a huge deal for him.
Patty:
Deal for him. Ohh, and as a rather decisive Taurian like yourself. Yeah, yeah. I mean, this is a massive deal.
{Both giggle}
And you've helped. You've really shared some very helpful advice, especially in terms of carers being able to track when they started working and they stopped working and what they needed to do that's really, really helpful.
And this is a massive deal because as most loved ones that become care recipients, they're often navigating so much of their own physical pain that they can become quite immersed in their own pain. So it sounds like Mark saw you.
Mitch:
He did. I it was. It was a beautiful shift. It was a shift I never expected. I never saw it coming. He saw my struggle. He saw my mental health was crumbling as the overwhelm sort of dialed up.
And he did his best to care for me and my journey too. We literally leaned into each other.
I've said it before and many won't understand this though. It's our truth.
For such the nightmare that we were both living, it was one of the most love filled intimate years of our entire relationship.
Patty:
Yeah, I can imagine that
Mitch:
Yeah, for the last two months of Mark's life, the disease changed a lot of his cognitive function.
Though I knew he was still in there, there were many heart achingly beautiful moments, shared memories created.
I recorded videos and audio recordings of him speaking to me, kind of like audio love letters, and he was still doing his best to express his love for me.
It was beautiful and wretched and in hindsight it made it even harder to lose him.
Patty:
Yeah. Thank you for sharing one of those videos with me earlier. That was really a privilege for me to be able to see that.
Mitch:
Thank you, darling.
Patty:
Traditionally, a sandwich generation describes someone who looks after their parent and their children, but we know that this is not always the case.
Sandwiches can be different, can't they? They can be croissants, baguettes and even wraps. Now, at one point you were caring for your parents and for Mark. How did you traverse that part of that very tricky terrain?
Mitch:
Yeah, it it kind of it takes a village does.
And when Mark was diagnosed, I called one of my sisters and told her what had happened and I simply said I can't do mum and Dad admin stuff anymore, I just can't and it was a relief when she agreed to take that admin on.
So again, circumstances led me here too. Mum and Dad moved into an aged care facility together at the exact same time that Mark's disease escalated the same time COVID started, so with aged care facilities in lockdown for months, I would speak to mum on the phone every week. My dad had dementia at the time, so he wasn't great in a conversation anyway.
I really missed them, you know. But honestly, knowing they were in care at that time where I couldn't provide care was such a blessing.
Patty:
And knowing that your two sisters were also available for them would have helped as well.
Mitch:
Hmmm. That's a long story. We'll get to that another time, but, Mum and Dad were well looked after in care.
I couldn't do anything for anyone else other than Mark and I. We were battling it out. We were deep in the trenches.
It was the most intense time of my life, and I still look back in wonder at how on Earth I got through it and how I did what I did. It's literally surreal.
Patty:
I think so too. And the fact that you can be so eloquent when you describe it is sensational.
I'm possibly opening Pandora's box here, but what did you or what do you grieve the most? I'm guessing how you and Mark were, before he got sick might be the most obvious, but is there anything else, maybe less? Obvious?
Mitch:
It's a great question. First and foremost, what I miss Mark, Mark, Mark, Mark, Mark, Mark, Mark, Mark.
Because of the changing nature of grief, initially I grieved ‘identity and purpose’, my own identity and personal purpose. You know, they're two such biggies, and I didn't expect that they would be such a big part.
I thought I'd just be sad and yearning, but you're also lost. You don't know who you are or what you're supposed to be about.
Patty:
No, you haven't even met this version of yourself, and you don't want to get to know them cause you didn't choose this aspect for your life.
Mitch:
No. God, no. I. No, I didn't want to get to know that version of me. I didn't want to be unpartnered.
I didn't want to be without him or the future we'd dreamed of you know. Megan Devine is the ultimate voice of experience, as she described.
And this is exactly how it was. We stand there in blinking, I'm quoting here. “We stand here in blinking horror, staring at the hole that was your life.”
That's what it's like. It's brutal bad dream territory. I miss him. He was my love, my best friend. All the things I miss him.
This isn't even going to be close to making it about sex, though. I miss a human to long hug without it getting weird.
You know someone to snuggle with, to sleep and wake up next to someone to put my hand on their leg in the car.
The smell of his skin and hair, just random kisses. Just because. Someone to be daggy with at home. God, I miss all of that.
Patty:
Your person you can only do that with your person.
Mitch:
Yeah, that's it. You know daggy dancing in the lounge room. I miss those little things like I now live in a world progressively that he hasn't lived in and isn't familiar with.
He doesn't know our post pandemic world, even little things. I know he'd be interested, like in Sydney's changing road system.
Our route to the hospital involved driving through the West Connect Rd works and he always wanted to understand more about how it would all work out in the end.
And now it's all so big and there's a tonne of progress in every time I drive through that area I always imagine he's in the car with me having something to say about it.
Patty:
He might well be in the car, turning the radio on to the station he liked best or being a backseat driver when you inadvertently speed.
Mitch:
Oh, and it's so funny that you say that he was such a backseat driver and he was so bossy when it came to car radio listening.
Patty:
Yeah, bless. I'm reluctant to ask if you have any regrets, because I think when we know better, we do better and making mistakes is how we learn or doing things differently is how we know we do them another way another time.
Is there anything you would have done maybe slightly differently in hindsight?
Mitch:
During it all, I somehow landed with the intention of setting myself up to have no regrets at his funeral - when it came to throwing absolutely everything at his disease. I couldn’t bear to sit at his funeral thinking, I shouldda followed up that Dr, researched that article, emailed that person, attended yet another webinar …. We both know I did more than I ever thought possible, and still don’t get how I did it all. It does help knowing that.
It’s not a regret, though if I had my time again with Mark and his illness, given that his chances at survival were dire, and we 100% had to stay positive and be fuelled purely by hope: I never factored in that it all wouldn’t work … so when we got to the “no more treatment options” part - maybe because of my M.O. / maybe because of my sheer exhaustion by that stage, I didn’t click out of carer mode; in hindsight I would’ve liked to have had a plan of what a love-filled exit to this life would look and feel like. I didn’t expect the end to happen, and so we weren’t prepared.
We did manage that for our 10 days in Palliative Care ward. We created this peaceful space of love, beautiful music, and I finally surrendered his care into the hands of others. I’d also been blessed: his amazing sister came up & stayed with us at home for the last 2 months of his life - which was a godsend. Sometimes you don’t realise how badly you need help, until it arrives. My exhaustion and complete burnout was palpable.
Patty:
Yeah, because being burnt out becomes your normal, doesn't it?
Mitch:
Oh my God. The exhaustion was palpable. Yeah.
Things like making sure advanced care plan and wills were all done; any life insurance & super was well managed; passwords and admin stuff - OMG! I knew nothing about how to access his stuff until his cognitive function was already sliding. Even things like government support available as a carer - that info is so helpful, especially if you still have to work while caring. And the avalanche of admin that lands in your lap literally hours after they pass - I had no idea that was coming, and had zero bandwidth to manage any of it.
Patty:
Completely. Yeah. You lost your dad last year, and one of your dear cats last month. How's your tender heart?
Mitch:
Thank you for asking … it’s bruised and kinda broken - though it refuses to give up and empty out.
Patty:
Yeah. The last question that I want to ask you before we go into some rapid fire wrap up, are there any parting words of wisdom that you might like to share with our carers who are looking after their loved ones who are no longer long for this earth?
Mitch:
Oh God YES !
There comes a time when the medical stuff and the “we need to save them” stuff is out of scope for you – maybe for everyone;
When your primary role is just to LOVE them, and celebrate the very last chapter of their life and your LOVE, together. With love.
Put in place whatever you need, to step out of your Carer role, and just be there to love them out of this life.
Even though you can hear the tsunami of grief rolling in on the horizon,
Do your best to bring joy. It’s the least we owe them for the love we’ve shared, right?
Take a million photos, though more importantly: if they can, take videos of them.
I asked Mark to give me a message of love – and I video’d it.
I’ve played it, literally thousands of times, and it’s my most prized possession.
Think into when they’re gone: what will you want to remember, to hear, to feel … ask them for that; do what you can to create that. It will be more comforting than you can imagine.
Don’t leave it too late before they can no longer do it.
Remember that the last part that shuts down in the end, is our hearing.
And I believe, our sense of touch. If they can still feel a needle or a catheter being inserted, they can definitely still feel a caress.
So if you’re not sure what to do when they’ve become silent as their body is shutting down: Talk to them, with a soft & loving heart.
Reminisce in good times, what you love about them, what they love about you, what they mean to you, affirm all the things that will revisit you in grief, and let yourself be raw.
Stroke, touch, hold them.
Let it be beautiful. Leave no stone unturned; have no regrets.
This truly is showtime. This is it. This is every moment, right down to now.
This is Showtime, right? This is it. Every moment, right down to now.
Patty:
Oh, Mitch, it takes an extraordinary human and an inordinate amount of transcendence and restoring to be able to alchemize your pain into a healing elixir for others. And I literally just interviewed someone who is doing exactly that.
Thank you so much. I also know that you recently graduated as a guide for Violet. It's an Australian non for profit providing free phone support for carers of palliative patients and bereavement support too. www.violet.org.au
And I know that you're also studying to get your Diploma of Counselling so that you're really going to be holding a beautiful, beautiful space for other carers.
Mitch, after all that, are you up for some rapid fire wrap up questions.
Mitch:
Yes, let's lighten it up. Let's do this.
Alright. When did you last get lost. Where were you going?
Mitch:
Ironically or not, I kind of feel metaphorically lost. Lost quite often.
So many moments in grief and survival mode come with not having a clue what you're doing or where you're going.
Patty:
Yeah. Do you sometimes feel like you're still on autopilot?
Mitch:
Ohh yeah.
Patty:
If you could have an unlimited supply of one thing, what would it be?
Mitch:
That's a no brainer. Quality time with Mark.
Patty:
Mm-hmm. Yeah. Mm-hmm. What habit holds you back the most?
Mitch:
You know what? Lethargy and exhaustion!
Do they go hand in hand?
Patty:
Maybe sometimes, but I think that's also part of your recovery. And your current grief.
Mitch:
Yeah.
Patty:
If you could pay someone to do one of your chores, which one would it be?
Mitch:
Easy cook dinner every night!
Mark used to do it for me. I was so blessed and I miss it. My bad, yeah.
Patty:
Right. What was the last word that you had to look up to see what it meant?
Mitch:
I can't remember the word I was doing a crossword with mum, and we agreed on how can we do this crossword if we don't understand the clue. What was yours?
Patty:
Punctilious.
Mitch:
What does it mean?
Patty:
You're gonna say it's ironic. It shows great attention to detail or correct behaviour.
Mitch:
Oh I love it!
Patty:
I'm desperate to say “I'm going to do that as punctiliously as possible”.
Mitch:
And you must!
Patty:
Folks, as you can probably sense from the banter between us, I could easily have chatted to Mitch for so much longer. We're so lucky that she generously shared intimate details of her grief and her private journey with us here at Carer Conversations.
Now I know I always ask you to subscribe and leave us a 5 star rating, and I do this because the messages that are in stories like the one Mitch just spoke of really need to be shared with others.
While I'll always be grateful to Mitch Gibson for speaking about the wisdom she attained while caring for her great love, Mark, I'll never forget that she could have accessed so many services through the Carer Gateway, that could have really helped her in her caring role.
If you know of someone that is currently navigating a similar rite of passage, please share this episode with them and from the bottom of my heart, I'm in awe of carers like Mitch.
Maybe like you, who are grieving their great love while traversing at present, and even a future that they never planned or intended for.
To those that love their Loves ferociously until the end, I salute you. Take good care of yourself, and especially those whose hearts are still tender right now till the next time I'm sending you so much love.
Patty:
How did we not cry? Is it cause we got all the crying done before the episode?
Mitch:
I think so, yeah. Ohh I know I did a bit of crying this morning.
Patty:
Ohh I did some with you!
Mitch:
I know, right?
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.