September 16, 2024 • 28 mins
Join host Frances Wood in a remarkable conversation with Karen, a resilient patient at a NSW Health hospital. Despite battling Crohn's disease and undergoing numerous medical treatments for over 20 years, Karen maintains a positive outlook on life. She shares her experiences with intravenous nutrition, living with a stoma bag, and the challenges of frequent hospital visits.
Discover how Karen's perspective and gratitude help her navigate her health journey, and learn about the deep relationships she forms with healthcare staff. This episode is a testament to the power of positivity and the importance of support from family, friends, and compassionate caregivers.
Listen in to gain insights on maintaining a positive mindset, the significance of patient-caregiver relationships, and practical advice for those dealing with chronic health conditions.
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Episode Transcript
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(00:00):
Music.
(00:12):
I'm your host, Frances Wood. Today
I'm bringing you a really remarkable conversation I had with a patient.
Her name's Karen. I spoke with Karen at her bedside while she was a patient
in a New South Wales health hospital.
Karen is so positive, so resilient, has such a remarkable sense of perspective and gratitude.
(00:39):
Despite having had to receive healthcare as an inpatient and an outpatient frequently for over 20 years.
Karen shares briefly some of the reasons why she is so unwell at times.
She lives with Crohn's disease, which is an inflammation of the digestive system.
(01:03):
At the time I spoke with her, She mentions that she's on TPN,
which is a type of complete nutrition delivered intravenously to people who
can't use their digestive systems at all.
And she does mention living with a stoma bag, which is a waterproof pouch that
collects waste from the body.
(01:26):
These are just some of the challenges that Karen lives with.
And despite this being quite confronting, I think you're going to be surprised
at how positive and resilient Karen is.
It was really such a joy to speak with her and I'm really delighted to be able
to share Karen's wisdom with you in her own words.
(01:48):
So, Karen, thank you for joining us on The Kind Side. What brings you to hospital?
I came in with a high temperature and pain in my stomach from Crohn's.
Yeah, so Crohn's disease, it's an inflammation of the bowel.
Yes, yeah, it is. I spend a lot of time in hospital, had a lot of operations
(02:12):
and lost virtually all my bowel.
Gosh, so you're a frequent flyer, shall we say.
Frequent flyer. Yeah. 28 laparotomy, very big one I've had. Wow.
Only got 70 centimetres of my bowel left. Goodness.
And is that over a long period of time that you've been through that, Taryn?
(02:34):
Yeah, over the last probably 20 years, but I had a lot.
So I'm now on home feeding and fluids.
I set up through DRIPS at home to keep me young.
Wow. So you have a combination of care in hospital and then care that you receive support with at home?
At home, yes, I do. and it's good to know coming into hospital all the time
(02:59):
that I do have a lot going on.
Of good caring nurses and doctors look after me. Yeah. It means a lot.
What's your approach to maintaining such a positive mindset when you have such
challenging health situation?
I always try and think it doesn't matter how sick you are, there's always somebody worse off than you.
(03:25):
You might have five minutes to live and somebody has two.
So I always try to be positive, happy, not very often have a meltdown.
It does happen occasionally, but I just learned to deal with it.
So it is like I'm still here, so no point in lying down feeling sorry for myself.
(03:50):
Perspective and gratitude. Yes, very, very grateful, very grateful.
And you said that was something you learned. so how was that process for you?
Did you find it harder early on?
I did, I did and before I got my ileostomy on a bag on my tummy and I've had
that for 20 years but always kept saying every time I went in for an operation not to put one on me.
(04:17):
Then when I got used to it 20 years ago, it's not too bad.
So, yeah, you just learn to do things differently and I learned to nurse when
I was 50, done that for nine years with my illness.
Wow. And so for our listeners, that's a bag that is attached to your abdomen
(04:38):
where your bodily waste can leave your body. Yeah, I don't.
Open my bowel normal, they come out in a bag on my tummy. Yeah.
So, yeah, that's how I do it.
And so you've learnt to manage your own self-care at home? I do.
I learnt to stop. I wasn't going to let it stop me doing anything in life.
(05:04):
So I just had to learn to do things a little bit differently than some others.
Yeah. So I said I learned, I started doing nursing at 50 with my bag and my illness.
You just got to learn to do things differently.
Wow. So, yeah. And always positive, try to.
(05:26):
What's it like for your loved ones around you as they support you with your health journey?
I think because they've always used to seeing me so sick, that's what keeps
me going, you know. No, but it's hard seeing them look at me when I am so sick.
But having that good support, my family, my friends and the staff,
(05:51):
I wouldn't have a positive attitude if I didn't have that.
Yeah. So, yeah, it goes a long way. I've got good support from family,
so it keeps me going and my grandchildren.
So, yeah. And what's it like for you as a patient who moves between receiving
support with care at home, coming into hospital, going back out again?
(06:15):
Do you find the communication and how do you find that the health system works with that flows?
Really good. The community nurses I have and I've been having for years,
some of them have been looking after me like 15 years, 20 years.
Really good support. caught really good with me and, yeah, and the nurses,
(06:37):
a lot of the nurses and staff have known me for that long too and it does help, really does help.
It's like another family in here.
And even down to the kitchen staff. I was sick yesterday morning.
The kitchen girl come back to ask me was I all right because then I was crying
(07:01):
and she was worried about me.
So I thought that was good. That is beautiful. You don't get that anywhere.
So, yeah, they all, yeah, really good.
So kind, so compassionate. And it does go a long way, being like that.
And it's good to know we don't need to be able to fix the problem.
It's just offering a little bit of kindness and support.
(07:24):
It goes a long way. It goes a long way. Yeah. It really does.
So you get to know the staff really well and you build those friendships.
What about are there other patients that are on a similar trajectory to you
that you sort of connect with?
Not so much. No, not – no. No, because a lot of mine is up at RPA,
(07:46):
the really big ones. Yes.
With the fluids that mine at home is under RPA.
So they do that bit. But Wollongong Hospital is virtually where I go all the
time when I go septic or get the bowel obstruction. I saw.
So, yeah, I was in hospital a lot. Not last year, the year before, I was 10 months in.
(08:12):
10 months? Six months straight, nine weeks here, got transferred to RPA,
waited another six weeks for surgery, had a 13-hour operation, two weeks ICU,
then another four months in, and no visitors because of COVID up at RPA. Straight.
(08:33):
If it wasn't for the nurses and doctors there...
Not getting visitors was really hard. They would cook meals at home and bring in to me the nurses.
The doctors would go down and bring a coffee up for me and, yeah,
some of them take me washing homes.
Oh, my goodness. So the staff were sort of filling that gap.
(08:55):
That's what loved ones might have done for you.
Yeah, and that meant a lot because it was hard being in a single room,
boom, so thick and full of staples and whatnot, and not being able to see my
family. It was very hard.
So that was beautiful. Yes.
Same here. Yeah.
(09:18):
I've had a few issues happening lately at home, and the staff have been here
to listen and support me when I've had to think about it here.
Yeah. They have been really good support.
Yeah. Oh, my goodness. I mean, I think it's hard for any of us to understand
(09:41):
what it's like to be a patient who has long lengths of stays because for most
patients, all they want to do is get home. Yeah.
So how do you approach each day when you know it could be months before you're home?
You just got to look forward and just keep being positive and thinking it's
(10:02):
one day closer and one day closer and be positive, not lie there feeling sorry for yourself.
You have to help yourself and let the nurses do their job with you.
But you just have to have a positive attitude.
But it sounds like it's the relationships you develop with the staff where they
(10:24):
make it feel like it's a home away from home in a sense.
It is. They've always got my back. On the weekend and last Friday,
the numb of the ward, she had my back with some things.
And so, yeah, right to the head, people, they care.
They really care. I've been very, very lucky. Yeah.
(10:46):
They've nursed me for years, but they know when I'm a little bit down and they're there for me.
Yeah. And listen, they're good, but yeah. Yeah.
What advice would you give a patient or a loved one of a patient who's maybe
struggling with some chronic health conditions for the first time and finding it tough?
(11:11):
What advice would you give them based on your experience?
Not when I got my bag on 20 years ago, there wasn't a lot of support around
for ileostomies and things like that.
But now there's a group for every illness and get involved with that and talk
(11:33):
to other people that have got the same problem that you might be able to help them with.
Like I've learned myself how to do things differently than what I was told by
a stoma nurse and I've learnt that through having one.
Yeah. So, yeah. Connect with other people in the same situation.
(11:54):
And if you're not coping, talk to someone about it. Reach out.
Reach out. There's always someone there to listen to you.
Yeah. It's no good to bundle it up.
And as best you can, learn your own body and your own health condition and be
empowered with your health care.
Yes. There are so many people and groups and meetings that can help you with anything now.
(12:23):
So you have to. Yeah. And what would you say to staff who might be new to working in hospitals?
Is there any advice you can give them when supporting patients like yourself
who have ongoing medical conditions? They know their own body and they know
what works for them and having long lengths of stay.
(12:44):
What advice would you give those students? I have over the years seen a lot
of nurses go from AIMs to RNs and new grads.
I've seen from when they're new grads and they got me for the very first time
and they see all my machines and drips and it's like an ICU and they panic.
(13:07):
And I'd just explain to them and, you know, talk them through it.
It's not that hard. I make them feel comfortable.
And they remember years later, if it wasn't for me, you know,
making them feel relaxed and that.
So, yeah, you just have to, yeah.
(13:29):
It's a partnership, isn't it, between the patient and the staff?
It is. and, yeah, it is hard when they first start but they'll always come back. Yeah.
Yeah. We care for each other. We learn from each other.
Yeah, it is. It's true. And there's so many, so many.
And they said like even when I was working, there was a couple that said that
(13:51):
they wouldn't have stayed there if it wasn't for me encouraging them to stay. That's amazing.
Yeah, it's very important to me. So I'm very grateful too I'm very grateful.
And what's it like, so right now we're chatting, it's winter, I'm wearing a face mask.
(14:15):
What's it like being a patient with so many people around you wearing face masks?
You know, it's a big loss when you're trying to communicate,
not to be able to see if someone's smiling.
Does it impact you at all? It does.
It's really hard because you can't tell, and I can't tell a lot of the nurses
because of that. But, you know,
(14:36):
but then I know you have to do it where you have to do it. Of course.
But you can sort of tell by their voice and that anyway.
But, yeah. So sometimes it's hard to distinguish who's who. Who's who. Yeah.
Especially, I guess, when you are very unwell. Yeah.
It would be challenging. Yeah. Yeah. It is.
(14:58):
I don't like when I feel claustrophobic, but I know it's got to be done.
You know, you've got to think of other people.
Absolutely. And we all have to do our part to help keep each other safe,
don't we? It's true. And yeah, you have to.
And not everyone does, but it does go a long way. Yeah. That's a very big thing for me.
(15:21):
Was COVID a really scary time for you being someone who may be immune compromised?
Yeah. It was very, very hard, especially when I was up at RPA for all that time.
I know this, it is very hard.
So, but yeah, and then you get
some patients that just worry about themselves and not others and yeah.
(15:44):
Yeah, it must be challenging to managing those patient dynamics if you're in
a shared room, two better or four better.
Sometimes it must be hard.
It is. It is. I always bring headphones in with me and my iPad because of the others.
(16:05):
I worry about them making noise. So it's good to think about other patients as well as yourself.
That's good advice. So I always do that. You can find ways to minimize the noise
you're creating for others, but I guess that also enables you to tune out sometimes
and go into your own space.
Yeah, it's a bit of both, but I do worry about other people in the room, you know, so I try.
(16:34):
And what's day-to-day like for you? Are you in pain? Are you tired?
Yeah, I'm tired. I'm very tired all the time. Yeah.
I do my own drips at home.
I set my drips up every afternoon and have them up all night and disconnect
them all the next morning.
But I can't go upstairs for the night where all the bedrooms are because there's
(16:58):
19 stairs, so I sleep downstairs. That's a bit hard. Yeah.
A bit challenging. I do get very tired, but I've learned at home over the last
three years to still try and do normal things,
pushing my drip stand around, not cook tea, vacuum, with my drip stand because
(17:18):
I think I'm not going to lie down and feel sorry for myself.
So I've learned to do things differently and slower.
Yeah. So accept what you've got and try and fit away to make that work.
And so are you on drips like
24 7 not 24 7 at home
about four in the afternoon till about
(17:40):
10 the next morning so it's still a fair
bit and then i have a backpack
that holds the two pumps and the
drips that i can actually go out with them so i
can put that on and connect it and take the backpack with
me and i'm not missing out isn't that remarkable yeah
on my grandkids birthdays and family things
(18:02):
and you know I've got cords hanging out
of my chest all the time that doesn't worry me okay yeah
it's yeah part of life it's the practicalities you wouldn't think about I imagine
even clothes shopping like it's hard getting clothes that accommodate yep like
they've got to be low front like challenging yeah and with my bag my,
(18:27):
is right at the top part of my stomach, not down lower.
So that's hard with getting pain because it goes over it very hard.
But you learn. It takes longer.
Yeah. And I can't go shopping by myself now.
So I get someone to go with me, not that I do that much.
And I use the walking stick when I'm out now for a bit of rapport.
(18:50):
But, yeah, I don't go out a lot like that. I go drive now.
I can imagine. I don't. Too scared.
Yeah. It would be scary. It is.
I had a fall, blackout last year
and had a fall outside and fractured my nose and my wrist and my foot.
Was in hospital for six days with that.
Come home four days later, they rang me and said, oh, a brain aneurysm showed up on the skin.
(19:16):
Oh, Karen. And I got a splenic aneurysm too, which I've had for nine years and
it's starting to get bigger.
Do you worry? about your health and the future?
It is what it is. It is what it is. You know,
I got spoke to for the first time when I come in from the ICU doctors about
(19:36):
if my heart stopped it, I want to start it because it would probably break my ribs and be on dialysis.
I said, you would have to give it a go for my family's sake, you know.
But I don't want to be on a machine forever. So a few weeks.
But I've talked to my family about that because that's important to me is to
(20:00):
keep your family and loved ones up to date with what you want.
Is it confronting to have those conversations?
Yeah, it's very hard but it's very important.
Family and really close friends know what you want.
(20:20):
So it's important to talk to them as hard as it is, but I think it's important.
Yeah, and that's what motivates you to keep striving and trying to maintain your health.
Yeah, that's what keeps me going is I have three sons, three daughter-in-laws and six grandchildren.
(20:41):
Wow. You always have to look at something positive and that's what keeps me
going is my beautiful grandchildren.
Children if I didn't have them I wouldn't have
the strength to keep pushing through so
I'm very lucky to have my family absolutely you
and I'm sure they feel very lucky to have you thank you
(21:02):
now Karen this is all about conversations to help us better understand each
other and get practical ideas as to how we can grow more kindness in health
are you able to share an an act of kindness that you've observed or experienced in hospital?
Just when I have been a little bit depressed or down, which doesn't happen often,
(21:27):
and they will sit with me, comfort me and talk to me. They're clear.
Big thing. Yeah. So just somebody taking the time to see you having a tough
day and just to listen and say, are you okay?
And it does go a long way. but they don't get a lot of time to do that with
(21:48):
each patient because a lot of the time they're understaffed. Yes.
And that's really hard seeing them work like that too, you know.
It is. It's very challenging, particularly in winter, which is when we're talking.
It's a hard time because there's a lot of respiratory illnesses circling and
our staff can get sick and our patients are very sick.
(22:10):
But where we're able to time just to touch base with our patients and listen.
And being a patient, you have to think of the others in the room too,
not just about yourself because there's four people there sometimes in the room.
(22:32):
So you have to, yeah. Be considerate. Be considerate for them as well.
Karen, how are you kind to yourself? How do you take care of yourself?
Perhaps you were sharing with me that you have some beautiful pets.
Oh, I have. That make you happy.
Yeah. I love my craft. I love my sewing and quilting, which I haven't been able to do much lately.
(22:56):
But I also have three beautiful pugs, a mum, dad and a baby one.
And that's all. Yeah, love them to bits. Yeah. They're part of the family.
But the biggest thing is my grandchildren I've lived for.
That's my pride and joy. So spending time with your grandchildren.
Yep. And they're good with me.
(23:17):
You know, my six-foot-four, 16-year-old grandson hangs onto my hand when we go out.
That's really sweet. He's caring to you, looking after you. And doesn't worry
what anyone else thinks. Yeah.
I have a lot of tubes hanging out when I'm out and people just sort of look and they don't care.
They just, yeah, very good. but
(23:40):
yeah it's good everyone that sees
the tubes knows i'm sick and just they're
really good with me inside the hospital outside so
when you're out and about in the community you find that people can visually
see that yeah you're not 100 and shopping for clothes even like because i have
(24:01):
to wear certain things and that's really a challenge too yeah and they yeah
once they see they're very caring too.
I don't think I've ever had anything negative for you.
That's lovely, Karen. Yeah. And just to finish off, if there was one thing we
could do to show kindness to you while you're in hospital, what would it be?
(24:24):
That you haven't done or that you still do. Can be one or the other.
Whatever comes to mind. The thing is, what I've said before is just the caring
is give me a hug when I'm down or sit and listen.
It does mean a lot. Yeah. So the emotional support as well as the physical care. Which I do get. Yeah.
(24:48):
I do get. So it's good to talk and they can see when something's wrong.
So I'm really grateful to them. Yeah. The nurse I've got today has been nursing me for 15 years.
Wow. It's incredible, isn't it? 15 years. Wow. And I imagine you've developed
a great friendship in that time.
Yeah. Very lucky. Well, Karen, I feel very lucky to have spoken with you today.
(25:14):
And I know that things that you've shared in this conversation are going to
stay with some of our listeners and make a really positive impact on their lives.
So thank you so much for joining us on The Kind Side.
You're very welcome, Jess. If anyone always talk about things,
don't keep it to yourself. There's always somebody to listen to you anywhere.
(25:39):
So always talk to somebody. Don't bottle it up. That's great advice.
Thank you so much, Karen. You're welcome.
What a special person. I hope you enjoyed that conversation with Karen.
Wasn't it amazing to hear about knowing nurses and other healthcare professionals
(25:59):
from the times they were students to when they're now senior and well-established in their careers.
I really enjoyed hearing about the deep relationships that she develops with
staff and how important that is for her being someone who can have really long
lengths of stay in hospital,
(26:20):
particularly during the COVID-19 pandemic.
10 months it's hard to imagine isn't it certainly made
me feel just so grateful to have
health and to be able to walk out
of that hospital at the end of my work day breathe in
the fresh air and and just be so grateful for having
(26:41):
a healthy body and I hope there was something from that conversation with Karen
that stayed with you she spoke about the sense of perspective that she has as
trying to think of others that are worse off than her when she's having tough times, being grateful,
spending time with her family, her pets, doing craft, and that when she's in
(27:07):
hospital, she really tries to make it her home away from home and that the healthcare.
Music.
Workers there are like her second family.
So, yeah, I really hope that you got something from that conversation.
And thank you as always for joining us on The Kind Side.
Music.
If you feel like you need to talk after listening to this episode,
(27:28):
please reach out and speak to someone trusted in your life or you can call Lifeline
on 13 11 14 24 hours a day, seven days a week. Take care.
This podcast was recorded on Dharawal country. I'd like to acknowledge and pay
my deep respects to the elders, past, present and future, and extend that respect
(27:52):
to any Aboriginal or Torres Strait Islander people listening.
I'd also like to acknowledge the lived experiences and the wisdom of all the
people who spoke to me for this podcast and those listening. Thank you.
Music.
(00:12):
I'm your host, Frances Wood. Today
I'm bringing you a really remarkable conversation I had with a patient.
Her name's Karen. I spoke with Karen at her bedside while she was a patient
in a New South Wales health hospital.
Karen is so positive, so resilient, has such a remarkable sense of perspective and gratitude.
(00:39):
Despite having had to receive healthcare as an inpatient and an outpatient frequently for over 20 years.
Karen shares briefly some of the reasons why she is so unwell at times.
She lives with Crohn's disease, which is an inflammation of the digestive system.
(01:03):
At the time I spoke with her, She mentions that she's on TPN,
which is a type of complete nutrition delivered intravenously to people who
can't use their digestive systems at all.
And she does mention living with a stoma bag, which is a waterproof pouch that
collects waste from the body.
(01:26):
These are just some of the challenges that Karen lives with.
And despite this being quite confronting, I think you're going to be surprised
at how positive and resilient Karen is.
It was really such a joy to speak with her and I'm really delighted to be able
to share Karen's wisdom with you in her own words.
(01:48):
So, Karen, thank you for joining us on The Kind Side. What brings you to hospital?
I came in with a high temperature and pain in my stomach from Crohn's.
Yeah, so Crohn's disease, it's an inflammation of the bowel.
Yes, yeah, it is. I spend a lot of time in hospital, had a lot of operations
(02:12):
and lost virtually all my bowel.
Gosh, so you're a frequent flyer, shall we say.
Frequent flyer. Yeah. 28 laparotomy, very big one I've had. Wow.
Only got 70 centimetres of my bowel left. Goodness.
And is that over a long period of time that you've been through that, Taryn?
(02:34):
Yeah, over the last probably 20 years, but I had a lot.
So I'm now on home feeding and fluids.
I set up through DRIPS at home to keep me young.
Wow. So you have a combination of care in hospital and then care that you receive support with at home?
At home, yes, I do. and it's good to know coming into hospital all the time
(02:59):
that I do have a lot going on.
Of good caring nurses and doctors look after me. Yeah. It means a lot.
What's your approach to maintaining such a positive mindset when you have such
challenging health situation?
I always try and think it doesn't matter how sick you are, there's always somebody worse off than you.
(03:25):
You might have five minutes to live and somebody has two.
So I always try to be positive, happy, not very often have a meltdown.
It does happen occasionally, but I just learned to deal with it.
So it is like I'm still here, so no point in lying down feeling sorry for myself.
(03:50):
Perspective and gratitude. Yes, very, very grateful, very grateful.
And you said that was something you learned. so how was that process for you?
Did you find it harder early on?
I did, I did and before I got my ileostomy on a bag on my tummy and I've had
that for 20 years but always kept saying every time I went in for an operation not to put one on me.
(04:17):
Then when I got used to it 20 years ago, it's not too bad.
So, yeah, you just learn to do things differently and I learned to nurse when
I was 50, done that for nine years with my illness.
Wow. And so for our listeners, that's a bag that is attached to your abdomen
(04:38):
where your bodily waste can leave your body. Yeah, I don't.
Open my bowel normal, they come out in a bag on my tummy. Yeah.
So, yeah, that's how I do it.
And so you've learnt to manage your own self-care at home? I do.
I learnt to stop. I wasn't going to let it stop me doing anything in life.
(05:04):
So I just had to learn to do things a little bit differently than some others.
Yeah. So I said I learned, I started doing nursing at 50 with my bag and my illness.
You just got to learn to do things differently.
Wow. So, yeah. And always positive, try to.
(05:26):
What's it like for your loved ones around you as they support you with your health journey?
I think because they've always used to seeing me so sick, that's what keeps
me going, you know. No, but it's hard seeing them look at me when I am so sick.
But having that good support, my family, my friends and the staff,
(05:51):
I wouldn't have a positive attitude if I didn't have that.
Yeah. So, yeah, it goes a long way. I've got good support from family,
so it keeps me going and my grandchildren.
So, yeah. And what's it like for you as a patient who moves between receiving
support with care at home, coming into hospital, going back out again?
(06:15):
Do you find the communication and how do you find that the health system works with that flows?
Really good. The community nurses I have and I've been having for years,
some of them have been looking after me like 15 years, 20 years.
Really good support. caught really good with me and, yeah, and the nurses,
(06:37):
a lot of the nurses and staff have known me for that long too and it does help, really does help.
It's like another family in here.
And even down to the kitchen staff. I was sick yesterday morning.
The kitchen girl come back to ask me was I all right because then I was crying
(07:01):
and she was worried about me.
So I thought that was good. That is beautiful. You don't get that anywhere.
So, yeah, they all, yeah, really good.
So kind, so compassionate. And it does go a long way, being like that.
And it's good to know we don't need to be able to fix the problem.
It's just offering a little bit of kindness and support.
(07:24):
It goes a long way. It goes a long way. Yeah. It really does.
So you get to know the staff really well and you build those friendships.
What about are there other patients that are on a similar trajectory to you
that you sort of connect with?
Not so much. No, not – no. No, because a lot of mine is up at RPA,
(07:46):
the really big ones. Yes.
With the fluids that mine at home is under RPA.
So they do that bit. But Wollongong Hospital is virtually where I go all the
time when I go septic or get the bowel obstruction. I saw.
So, yeah, I was in hospital a lot. Not last year, the year before, I was 10 months in.
(08:12):
10 months? Six months straight, nine weeks here, got transferred to RPA,
waited another six weeks for surgery, had a 13-hour operation, two weeks ICU,
then another four months in, and no visitors because of COVID up at RPA. Straight.
(08:33):
If it wasn't for the nurses and doctors there...
Not getting visitors was really hard. They would cook meals at home and bring in to me the nurses.
The doctors would go down and bring a coffee up for me and, yeah,
some of them take me washing homes.
Oh, my goodness. So the staff were sort of filling that gap.
(08:55):
That's what loved ones might have done for you.
Yeah, and that meant a lot because it was hard being in a single room,
boom, so thick and full of staples and whatnot, and not being able to see my
family. It was very hard.
So that was beautiful. Yes.
Same here. Yeah.
(09:18):
I've had a few issues happening lately at home, and the staff have been here
to listen and support me when I've had to think about it here.
Yeah. They have been really good support.
Yeah. Oh, my goodness. I mean, I think it's hard for any of us to understand
(09:41):
what it's like to be a patient who has long lengths of stays because for most
patients, all they want to do is get home. Yeah.
So how do you approach each day when you know it could be months before you're home?
You just got to look forward and just keep being positive and thinking it's
(10:02):
one day closer and one day closer and be positive, not lie there feeling sorry for yourself.
You have to help yourself and let the nurses do their job with you.
But you just have to have a positive attitude.
But it sounds like it's the relationships you develop with the staff where they
(10:24):
make it feel like it's a home away from home in a sense.
It is. They've always got my back. On the weekend and last Friday,
the numb of the ward, she had my back with some things.
And so, yeah, right to the head, people, they care.
They really care. I've been very, very lucky. Yeah.
(10:46):
They've nursed me for years, but they know when I'm a little bit down and they're there for me.
Yeah. And listen, they're good, but yeah. Yeah.
What advice would you give a patient or a loved one of a patient who's maybe
struggling with some chronic health conditions for the first time and finding it tough?
(11:11):
What advice would you give them based on your experience?
Not when I got my bag on 20 years ago, there wasn't a lot of support around
for ileostomies and things like that.
But now there's a group for every illness and get involved with that and talk
(11:33):
to other people that have got the same problem that you might be able to help them with.
Like I've learned myself how to do things differently than what I was told by
a stoma nurse and I've learnt that through having one.
Yeah. So, yeah. Connect with other people in the same situation.
(11:54):
And if you're not coping, talk to someone about it. Reach out.
Reach out. There's always someone there to listen to you.
Yeah. It's no good to bundle it up.
And as best you can, learn your own body and your own health condition and be
empowered with your health care.
Yes. There are so many people and groups and meetings that can help you with anything now.
(12:23):
So you have to. Yeah. And what would you say to staff who might be new to working in hospitals?
Is there any advice you can give them when supporting patients like yourself
who have ongoing medical conditions? They know their own body and they know
what works for them and having long lengths of stay.
(12:44):
What advice would you give those students? I have over the years seen a lot
of nurses go from AIMs to RNs and new grads.
I've seen from when they're new grads and they got me for the very first time
and they see all my machines and drips and it's like an ICU and they panic.
(13:07):
And I'd just explain to them and, you know, talk them through it.
It's not that hard. I make them feel comfortable.
And they remember years later, if it wasn't for me, you know,
making them feel relaxed and that.
So, yeah, you just have to, yeah.
(13:29):
It's a partnership, isn't it, between the patient and the staff?
It is. and, yeah, it is hard when they first start but they'll always come back. Yeah.
Yeah. We care for each other. We learn from each other.
Yeah, it is. It's true. And there's so many, so many.
And they said like even when I was working, there was a couple that said that
(13:51):
they wouldn't have stayed there if it wasn't for me encouraging them to stay. That's amazing.
Yeah, it's very important to me. So I'm very grateful too I'm very grateful.
And what's it like, so right now we're chatting, it's winter, I'm wearing a face mask.
(14:15):
What's it like being a patient with so many people around you wearing face masks?
You know, it's a big loss when you're trying to communicate,
not to be able to see if someone's smiling.
Does it impact you at all? It does.
It's really hard because you can't tell, and I can't tell a lot of the nurses
because of that. But, you know,
(14:36):
but then I know you have to do it where you have to do it. Of course.
But you can sort of tell by their voice and that anyway.
But, yeah. So sometimes it's hard to distinguish who's who. Who's who. Yeah.
Especially, I guess, when you are very unwell. Yeah.
It would be challenging. Yeah. Yeah. It is.
(14:58):
I don't like when I feel claustrophobic, but I know it's got to be done.
You know, you've got to think of other people.
Absolutely. And we all have to do our part to help keep each other safe,
don't we? It's true. And yeah, you have to.
And not everyone does, but it does go a long way. Yeah. That's a very big thing for me.
(15:21):
Was COVID a really scary time for you being someone who may be immune compromised?
Yeah. It was very, very hard, especially when I was up at RPA for all that time.
I know this, it is very hard.
So, but yeah, and then you get
some patients that just worry about themselves and not others and yeah.
(15:44):
Yeah, it must be challenging to managing those patient dynamics if you're in
a shared room, two better or four better.
Sometimes it must be hard.
It is. It is. I always bring headphones in with me and my iPad because of the others.
(16:05):
I worry about them making noise. So it's good to think about other patients as well as yourself.
That's good advice. So I always do that. You can find ways to minimize the noise
you're creating for others, but I guess that also enables you to tune out sometimes
and go into your own space.
Yeah, it's a bit of both, but I do worry about other people in the room, you know, so I try.
(16:34):
And what's day-to-day like for you? Are you in pain? Are you tired?
Yeah, I'm tired. I'm very tired all the time. Yeah.
I do my own drips at home.
I set my drips up every afternoon and have them up all night and disconnect
them all the next morning.
But I can't go upstairs for the night where all the bedrooms are because there's
(16:58):
19 stairs, so I sleep downstairs. That's a bit hard. Yeah.
A bit challenging. I do get very tired, but I've learned at home over the last
three years to still try and do normal things,
pushing my drip stand around, not cook tea, vacuum, with my drip stand because
(17:18):
I think I'm not going to lie down and feel sorry for myself.
So I've learned to do things differently and slower.
Yeah. So accept what you've got and try and fit away to make that work.
And so are you on drips like
24 7 not 24 7 at home
about four in the afternoon till about
(17:40):
10 the next morning so it's still a fair
bit and then i have a backpack
that holds the two pumps and the
drips that i can actually go out with them so i
can put that on and connect it and take the backpack with
me and i'm not missing out isn't that remarkable yeah
on my grandkids birthdays and family things
(18:02):
and you know I've got cords hanging out
of my chest all the time that doesn't worry me okay yeah
it's yeah part of life it's the practicalities you wouldn't think about I imagine
even clothes shopping like it's hard getting clothes that accommodate yep like
they've got to be low front like challenging yeah and with my bag my,
(18:27):
is right at the top part of my stomach, not down lower.
So that's hard with getting pain because it goes over it very hard.
But you learn. It takes longer.
Yeah. And I can't go shopping by myself now.
So I get someone to go with me, not that I do that much.
And I use the walking stick when I'm out now for a bit of rapport.
(18:50):
But, yeah, I don't go out a lot like that. I go drive now.
I can imagine. I don't. Too scared.
Yeah. It would be scary. It is.
I had a fall, blackout last year
and had a fall outside and fractured my nose and my wrist and my foot.
Was in hospital for six days with that.
Come home four days later, they rang me and said, oh, a brain aneurysm showed up on the skin.
(19:16):
Oh, Karen. And I got a splenic aneurysm too, which I've had for nine years and
it's starting to get bigger.
Do you worry? about your health and the future?
It is what it is. It is what it is. You know,
I got spoke to for the first time when I come in from the ICU doctors about
(19:36):
if my heart stopped it, I want to start it because it would probably break my ribs and be on dialysis.
I said, you would have to give it a go for my family's sake, you know.
But I don't want to be on a machine forever. So a few weeks.
But I've talked to my family about that because that's important to me is to
(20:00):
keep your family and loved ones up to date with what you want.
Is it confronting to have those conversations?
Yeah, it's very hard but it's very important.
Family and really close friends know what you want.
(20:20):
So it's important to talk to them as hard as it is, but I think it's important.
Yeah, and that's what motivates you to keep striving and trying to maintain your health.
Yeah, that's what keeps me going is I have three sons, three daughter-in-laws and six grandchildren.
(20:41):
Wow. You always have to look at something positive and that's what keeps me
going is my beautiful grandchildren.
Children if I didn't have them I wouldn't have
the strength to keep pushing through so
I'm very lucky to have my family absolutely you
and I'm sure they feel very lucky to have you thank you
(21:02):
now Karen this is all about conversations to help us better understand each
other and get practical ideas as to how we can grow more kindness in health
are you able to share an an act of kindness that you've observed or experienced in hospital?
Just when I have been a little bit depressed or down, which doesn't happen often,
(21:27):
and they will sit with me, comfort me and talk to me. They're clear.
Big thing. Yeah. So just somebody taking the time to see you having a tough
day and just to listen and say, are you okay?
And it does go a long way. but they don't get a lot of time to do that with
(21:48):
each patient because a lot of the time they're understaffed. Yes.
And that's really hard seeing them work like that too, you know.
It is. It's very challenging, particularly in winter, which is when we're talking.
It's a hard time because there's a lot of respiratory illnesses circling and
our staff can get sick and our patients are very sick.
(22:10):
But where we're able to time just to touch base with our patients and listen.
And being a patient, you have to think of the others in the room too,
not just about yourself because there's four people there sometimes in the room.
(22:32):
So you have to, yeah. Be considerate. Be considerate for them as well.
Karen, how are you kind to yourself? How do you take care of yourself?
Perhaps you were sharing with me that you have some beautiful pets.
Oh, I have. That make you happy.
Yeah. I love my craft. I love my sewing and quilting, which I haven't been able to do much lately.
(22:56):
But I also have three beautiful pugs, a mum, dad and a baby one.
And that's all. Yeah, love them to bits. Yeah. They're part of the family.
But the biggest thing is my grandchildren I've lived for.
That's my pride and joy. So spending time with your grandchildren.
Yep. And they're good with me.
(23:17):
You know, my six-foot-four, 16-year-old grandson hangs onto my hand when we go out.
That's really sweet. He's caring to you, looking after you. And doesn't worry
what anyone else thinks. Yeah.
I have a lot of tubes hanging out when I'm out and people just sort of look and they don't care.
They just, yeah, very good. but
(23:40):
yeah it's good everyone that sees
the tubes knows i'm sick and just they're
really good with me inside the hospital outside so
when you're out and about in the community you find that people can visually
see that yeah you're not 100 and shopping for clothes even like because i have
(24:01):
to wear certain things and that's really a challenge too yeah and they yeah
once they see they're very caring too.
I don't think I've ever had anything negative for you.
That's lovely, Karen. Yeah. And just to finish off, if there was one thing we
could do to show kindness to you while you're in hospital, what would it be?
(24:24):
That you haven't done or that you still do. Can be one or the other.
Whatever comes to mind. The thing is, what I've said before is just the caring
is give me a hug when I'm down or sit and listen.
It does mean a lot. Yeah. So the emotional support as well as the physical care. Which I do get. Yeah.
(24:48):
I do get. So it's good to talk and they can see when something's wrong.
So I'm really grateful to them. Yeah. The nurse I've got today has been nursing me for 15 years.
Wow. It's incredible, isn't it? 15 years. Wow. And I imagine you've developed
a great friendship in that time.
Yeah. Very lucky. Well, Karen, I feel very lucky to have spoken with you today.
(25:14):
And I know that things that you've shared in this conversation are going to
stay with some of our listeners and make a really positive impact on their lives.
So thank you so much for joining us on The Kind Side.
You're very welcome, Jess. If anyone always talk about things,
don't keep it to yourself. There's always somebody to listen to you anywhere.
(25:39):
So always talk to somebody. Don't bottle it up. That's great advice.
Thank you so much, Karen. You're welcome.
What a special person. I hope you enjoyed that conversation with Karen.
Wasn't it amazing to hear about knowing nurses and other healthcare professionals
(25:59):
from the times they were students to when they're now senior and well-established in their careers.
I really enjoyed hearing about the deep relationships that she develops with
staff and how important that is for her being someone who can have really long
lengths of stay in hospital,
(26:20):
particularly during the COVID-19 pandemic.
10 months it's hard to imagine isn't it certainly made
me feel just so grateful to have
health and to be able to walk out
of that hospital at the end of my work day breathe in
the fresh air and and just be so grateful for having
(26:41):
a healthy body and I hope there was something from that conversation with Karen
that stayed with you she spoke about the sense of perspective that she has as
trying to think of others that are worse off than her when she's having tough times, being grateful,
spending time with her family, her pets, doing craft, and that when she's in
(27:07):
hospital, she really tries to make it her home away from home and that the healthcare.
Music.
Workers there are like her second family.
So, yeah, I really hope that you got something from that conversation.
And thank you as always for joining us on The Kind Side.
Music.
If you feel like you need to talk after listening to this episode,
(27:28):
please reach out and speak to someone trusted in your life or you can call Lifeline
on 13 11 14 24 hours a day, seven days a week. Take care.
This podcast was recorded on Dharawal country. I'd like to acknowledge and pay
my deep respects to the elders, past, present and future, and extend that respect
(27:52):
to any Aboriginal or Torres Strait Islander people listening.
I'd also like to acknowledge the lived experiences and the wisdom of all the
people who spoke to me for this podcast and those listening. Thank you.
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