Latest / Behind The Village Podcast / Caregiver Burnout and the Break Nobody Takes | Carolyn Harris, LaToya Hillson & Terri Gortnar

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Caregiver Burnout and the Break Nobody Takes | Carolyn Harris, LaToya Hillson & Terri Gortnar · Behind The Village Podcast

0:02
You're listening to the Behind the Village podcast,
0:04
where we invite you to join us on a journey to
0:07
understand how to live a life worth living. Today's
0:11
conversation is about pediatric caregiving, and
0:13
I have three guests joining me. Carolyn is the
0:16
Respite Coordinator with Empower Simcoe. Latoya
0:19
is the Community Psychosocial Support Worker
0:21
on the Pediatric Advanced Care Team at SickKids.
0:25
And Terry is a mom of two children with Batten
0:27
disease and the founder of the Canadian CLN2
0:30
Foundation. I'll let them each introduce themselves
0:32
properly in a moment. In this episode, we talk
0:35
about what it actually looks like the moment
0:38
a diagnosis changes everything. The mountain
0:40
of paperwork, the new medical language a family
0:43
suddenly has to learn overnight, and the identity
0:46
a caregiver can lose along the way. We get into
0:48
anticipatory grief, why caregiver guilt keeps
0:52
so many people from asking for help. and what
0:54
respite care really looks like in practice. Before
0:57
we get into it, I'd like to give you a trigger
1:00
warning. This episode deals with child illness
1:02
and death. We describe symptoms and struggles
1:05
Terry's children experience with Batten's disease.
1:08
We do also mention the passing of Terry's daughter
1:11
Claire and the future passing of her son Joseph.
1:14
This episode is focused on the impact these moments
1:17
have had on Terry as a caregiver, and we do not
1:20
go into detail of Claire's passing. If this is
1:24
something you're unable to sit with today, please
1:26
take care of yourself and come back to this episode
1:28
another time. With that, let's get into the conversation.
1:36
I'm Carolyn Harris. I'm the Respite Coordinator
1:38
with Empower Simcoe. Empower Simcoe is a fairly
1:43
large organization that's been around for over
1:45
70 years in Simcoe County. We provide a wide
1:49
range of supports and services across Simcoe
1:51
County that include preschool services, family
1:57
services, which includes the respite services
2:00
that I oversee. We are a community living organization.
2:05
We also have the regional housing as well. a
2:09
lot of supports and services across Simcoe County.
2:13
I'm Latoya. I am the community psychosocial support
2:16
worker on the pediatric advanced care team at
2:19
SickKids. My background and training is in child
2:22
life. That's what my degree is in. My role is
2:24
helping families navigate serious illness. And
2:29
I get the blessing of going into the homes to
2:31
help do that. So working with the kids and the
2:33
families to help them through the hard times.
2:36
I'm Terry, and I am a mom to two children with
2:41
Batten disease. They have the CLN2. There is
2:45
13 different kinds. CLN2 is the only one that
2:49
has a treatment. And five years ago, my husband
2:56
and I, once we got the diagnosis, started a foundation.
3:02
Canadian CLN2 Foundation. And we worked with
3:05
the government and Health Canada and Sick Kids
3:08
Hospital to bring this treatment to Canada. And
3:13
now there is 13 kids across Canada on it. Wow.
3:18
Wow. Could you describe CLN2 and what that is?
3:24
So once my daughter turned three, it was just
3:29
right after her birthday, she had a seizure.
3:31
And I didn't even know what a seizure looked
3:33
like. And thankfully, I had a friend over who
3:36
knew and knew what to do. And then like six weeks
3:41
later, she had another one. And then that's when
3:45
doctors say, OK, there might be something going
3:48
on. Every child gets like a one free pass on
3:51
a seizure. And then. Then it was like six weeks
3:55
later, she had another one. And then so then
3:56
we decided on medication. But in Canada at the
4:01
time, you had to fail so many medications before
4:05
they would offer genetic testing. We weren't
4:09
getting very much through the hospital. We ended
4:11
up going to the States to get like MRIs and things
4:15
moving because it wasn't happening here. We finally
4:18
got pulled into SickKids. a pediatric neurologist
4:23
that was outside of the city because we were
4:25
in york region and so once we got in to sick
4:29
kids and was being followed by the neurology
4:32
then they gave genetic testing and we She was
4:37
having a lot of seizures. We didn't have a lot
4:39
of answers. Finally, this panel came back, and
4:43
I remember this day. It's called, like, D -Day,
4:48
Diagnosis Day. It's the day that you'll never
4:50
forget. Your life is what it was before and what
4:53
it was after from this day. And the doctor sat
4:56
us down and she said, your daughter has CLN2.
5:00
And I felt relief knowing finally we have a name
5:03
to this. So let's be able to treat it. And she
5:08
said, first, she's going to lose her ability
5:10
to walk, to talk, to see. She will keep experiencing
5:16
seizures. She'll have ataxia. She'll experience
5:20
dementia. And she will experience types of different
5:26
pains that can't be controlled. And she won't
5:30
see her 10th birthday. And I just remember almost
5:36
passing out and I threw up. So I was like, what?
5:41
And she said, there is a treatment in the U .S.,
5:45
but we don't have anything here. And now we need
5:48
to test your son. It just was just kind of like,
5:53
is this real life? It felt like a total fog.
5:58
And I remember thinking like, my son was so different
6:02
from my daughter that he was much more mobile.
6:05
He was so outgoing. He was already talking. He
6:08
was 18 months at the time that I wasn't even
6:11
prepared for the phone call that he had it. That
6:14
was like, there's no way. And then when he had
6:16
it, when I got the call and when they wanted
6:18
to schedule a meeting, I'm like, no. I'm not
6:21
waiting. You have the results. Just tell me now.
6:24
And she said, he has it. And I just remember,
6:27
like, my whole world shutting down. And then
6:31
I had to call my husband and tell him. And I
6:37
just remember him, like, yell, like, just crying
6:42
in pain and, like, almost yelling no. And he
6:47
happens to work with his family and his parents
6:50
kind of ran in and they ended up bringing him
6:54
home. Our friends came over so that we weren't
6:57
alone. But there's just nothing that can prepare
7:01
you for that. Yeah. So Latoya, with your role,
7:09
you know, and your support for families with
7:12
these different diagnoses, what... How do you,
7:16
I guess, interact with them or where do you step
7:19
in in the process? So it really varies where
7:24
I step in the process. If I'm very fortunate,
7:27
I get to meet families very early on. So I really
7:31
get to know the families and be with them on
7:33
the journey and kind of navigate whatever's coming
7:36
up and support them through that. At other times,
7:39
you're not fortunate enough and you meet them
7:42
more towards the end. My goal when I'm working
7:45
is just to meet a family exactly where they're
7:48
at and figure out what they need and how I can
7:51
be supportive to them. So that can look very
7:53
different for every family. Like some families
7:56
need some very, very hands -on support with.
7:59
siblings understanding a diagnosis, maybe cousins
8:02
understanding a diagnosis. Other times it's the
8:05
child themselves. A lot of my work is with the
8:07
child themselves, helping them understand their
8:09
diagnosis and then making sure that they're having
8:11
good quality of life during that time. So it's
8:14
finding ways to make whatever they're dealing
8:16
with. So I always say that I'm not fixing anything.
8:23
Like I can't change a diagnosis. I'm not going
8:26
to be able to fix an outcome. But what I can
8:29
do is meet you and help you along the way. So
8:32
whether it's something like with, if I can use
8:35
an example with Terry, where she wrote to me
8:40
and said her son was going in for a procedure.
8:43
And can I help her with words to help support
8:46
him? And there's things that we have to consider.
8:49
specifically for him. So we have vision loss.
8:51
So like me sending a book along, writing a little
8:54
book about him is not going to be very helpful.
8:56
But what I can do is create a storyboard for
8:59
her that she can go through with him and explain
9:02
to him what's happening. So every family, I'm
9:05
very blessed. Every family, if they trust me
9:07
enough to let me in, I get to know them. I'm
9:09
able to support them in the way that they need
9:11
support. That's really nice. And I think that's
9:14
great to have that flexibility to be able to
9:17
work with families. In the way that they need,
9:20
which is important. So I guess going back to
9:25
you, Terry, I'm not ignoring you, Carolyn, I
9:27
promise I'll circle it back. But in terms of,
9:32
I guess, the child care and the caregiving aspect
9:37
of your experience, maybe you could talk about
9:41
that a little bit. Yeah, so overnight, our whole
9:44
world and like my plans and life plans changed.
9:48
I had a career in software and I had planned
9:52
on going back to work full time once Joseph was
9:56
two. And so there was none of that. I was staying
10:01
home now. So I had to I had to grieve my career.
10:06
And then I had it felt. At first, I had a lot
10:09
of resentment towards my husband because he could
10:11
leave every day and go to work. But then I realized
10:14
how lucky I am to be at home with my kids every
10:17
day because I know a lot of people have to manage
10:20
working and, you know, taking care of their children.
10:24
But we had to work with, like, a grief counselor
10:28
during this time. And that was something that
10:31
was offered through the hospital near our home.
10:38
And thankfully, like they were able to help this.
10:41
I think one thing that we don't talk about the
10:43
most is that marriages don't usually survive.
10:47
a diagnosis like this and how important it is
10:51
to be supported in that way so that you keep
10:54
your family together through this and you become
10:57
a partner in going through. And I think because
11:00
we had to fight for treatment together, it gave
11:03
us a reason to keep going and to make sure that
11:08
it gave us some kind of... direction so that
11:12
we weren't just sitting at home thinking, oh
11:14
my gosh, our kids are going to die. What are
11:16
we going to do? But yeah, all of a sudden I had
11:21
to learn all this new language about, you know,
11:24
science and medicine and, you know, phenotypes
11:28
and treatments and doctors and specialists. And
11:32
because this disease is so rare, like they were
11:35
all over the world. And, you know, reaching out
11:38
to these people and going to politicians to help
11:41
us like it was just an entire new world. I needed
11:44
to become an occupational therapist. I needed
11:46
to become a physical therapist, you know, to
11:49
keep them strong. I needed to understand equipment.
11:51
I had to understand how are we going to pay for
11:54
all this? Like any any piece of equipment starts
11:57
at five grand, like just off the bat. And so
12:00
some things are covered by the government. Some
12:02
things aren't. You know, there's there's so much
12:05
paperwork, paperwork to get any kind of resource.
12:10
And this is where like Empower Simcoe came in
12:13
help for me. I got a CTN coordinator and through
12:18
them and through Empower Simcoe, I was able to
12:21
have someone help me with all of the paperwork.
12:24
But the paperwork to get help is just so overwhelming
12:29
for. any family. Yeah. You know, Terry, you,
12:33
you touch on all those, all those aspects of
12:37
being a caregiver. You know, the moment that
12:39
you receive those, those diagnoses for your children,
12:43
your experience as a parent enhanced to also
12:49
being a caregiver. You know, I, when I. talk
12:52
in some workshops about uh respite and about
12:56
caregiving we talk about what the difference
12:58
is between you know your typical parenting and
13:01
then moving into this role of caregiver and you
13:05
touched upon so many things in terms of um you
13:09
know, your identity, your identity as a employed
13:13
individual, your professional identity, your
13:17
personal identity of the hobbies and interests
13:21
that you have and how those change and your role
13:24
of, you know. You never knew you'd become a physiotherapist
13:29
and understand medical jargon. And those add
13:33
extra challenges onto caregivers. And that's
13:36
why, you know, in our, with Empower Simcoe's
13:39
family relief program, we really focus on caregiver
13:43
well -being, resiliency, and do what we can to
13:47
navigate that system with you. So, you know,
13:50
our family services do support. families to do
13:54
paperwork and understand what resources and services
14:01
are the best fit for you. And you're right, the
14:05
paperwork is extensive. We hear it all the time.
14:09
You know, I would say that we did a caregiver
14:14
needs assessment in Simcoe County. said the paperwork
14:24
and the navigation of services is a huge challenge.
14:27
So, you know, we do our best to focus on that,
14:30
hear what they're saying, and provide that added
14:33
service to be able to help people navigate through
14:36
the web of all the services that are out there
14:43
that you can access. So we're happy to do that,
14:46
and I'm glad that we were able to have a positive
14:50
effect for you. How do you get in touch or how
14:53
did you get in touch with Empower Simcoe, Terry?
14:57
So when our story went on the media and we were
15:03
on like national TV to get them to say yes to
15:07
funding, there was all of these medical moms
15:12
that reached out to me. And I can't say enough
15:15
about other medical moms like without them. It
15:20
would just be such a lonely, crazy journey. And
15:25
because they're the only ones that understand
15:27
what you're going through, it's just amazing
15:29
how they rally around you even though they're
15:32
going through the same thing. And so I had so
15:37
many messages from women that were telling me,
15:43
Have you been part of this group on Facebook?
15:46
Have you reached out to this person? Have you
15:48
talked to someone? Have you spoken to CTN? Have
15:52
you reached out to Empower Simcoe? This is what
15:54
I have in place. This is what's helped me. And
15:58
that was really how I found the information.
16:01
I wouldn't even have known where to look, but
16:04
it's just... And I don't know how these moms
16:08
lived without like the Internet or Facebook because
16:11
without having all that shared information, especially
16:14
how to manage your respite and the best ways
16:21
to do that. And also around like having the rare
16:24
disease, there's these Facebook groups with families
16:27
and because they're so little. We're all over
16:31
the world. We all have different languages, but
16:33
we managed to come together to talk about, you
16:36
know, what's been working for our children and
16:38
what hasn't so that we can try to find a similar
16:41
experience because the doctors don't know. A
16:46
lot. And they can't understand every single rare
16:50
disease. You know, there's over 100 ,000 rare
16:53
disease and most of them are in the pediatric
16:55
space. So doctors don't mind listening to, you
17:01
know, what you bring to the table as a parent.
17:04
And I think you're your kid's best advocate.
17:08
You have to, you know, do the research, dig in.
17:12
But I do find that. other families are very,
17:16
very supportive when they're in that space. And
17:19
with us, with the foundation, usually we are
17:22
the first touch point if a child gets diagnosed
17:25
in Canada. And I'm very happy to be that first
17:30
person so that they don't feel alone. I have
17:35
very different stories with both of my children.
17:38
So I can, I'm able to talk to families that do
17:43
get diagnosed early enough. Like Joseph, he was
17:46
the third youngest child in the world to receive
17:49
treatment. So his journey is very different than
17:52
what his sister was. My daughter, Claire, who
17:55
was a very typical CLN2 child. And I've gone
18:01
through the grief of losing that and going on
18:04
and not being able to jump back out of the rare
18:06
disease world. Because I have to keep going for
18:10
Joseph. So I find that I have a lot of experience
18:14
and I'm able to connect to people on a lot of
18:17
different levels because my journey is still
18:20
going. I'd love to touch on, I think we've been
18:24
kind of dancing around it and it would apply
18:26
to everyone. But the idea of, you know, the loss
18:28
of identity and anticipatory grief when you're
18:32
dealing in these spaces and with these experiences.
18:35
So I just thoughts on that. I, when both of my
18:41
children got diagnosed, I'm not going to lie.
18:46
My first thought was we cannot live like this.
18:49
Like what is there to live for if we're not going
18:51
to have a family? And do I want them to experience
18:55
all of these symptoms? Like what kind of quality
18:59
of life will I have? And that's when the pack.
19:03
came in and gave me a very different perspective
19:06
on how I could make their quality of life matter.
19:12
And that it wasn't all just doom and gloom. And
19:18
it took a while. There was a big anger stage
19:23
for sure. But there came to a point when I realized
19:27
all of us are not guaranteed tomorrow. Like my
19:31
child could pass at any time. I do know what's
19:35
going to happen and I'm going to make everything
19:38
count until then. But it changed my friends.
19:44
A lot of people backed away because that's just
19:46
too heavy to handle. I had to, I could never
19:52
keep plans because I never knew how my children
19:54
were going to be. I can't be around anyone that's
19:57
sick because if they're sick, then they miss
19:59
their treatment. they have treatment every two
20:02
weeks at SickKids. And if they have like a temperature
20:06
or a cough, then they can't have that. And that
20:09
they're receiving an enzyme that their body does
20:12
not make. And without it, the disease will progress
20:17
quite rapidly. So this is slowing it down or
20:20
keeping it stable. And, you know, and all of
20:24
a sudden, everything that we were doing traveling
20:28
and all these family get togethers all of a sudden
20:32
it was like oh we've got it back back away and
20:36
that was really sad too like I have a big family
20:39
all of my sisters and brothers have children
20:43
and and um it was very hard for all of them to
20:48
understand and it definitely changed my friendships
20:51
and then I lost my colleagues like Because I
20:54
wasn't going back to work. And I would never
20:57
go back to work. Once I experienced being in
21:01
the rare disease world, I knew I would never
21:03
go back to corporate and make people with money
21:06
more money. Like, that was crazy to me. I knew
21:10
that I would stay in, like, nonprofits or helping
21:14
people in this space. Because I seen that even
21:20
though I have the privilege of... having English
21:23
as my first language, being white, having, you
21:28
know, a higher income. And it was still hard
21:32
for me. I seen how people that, you know, did
21:35
not have those things. It was so hard for them.
21:40
And it just gave me so much empathy for what
21:44
everyone was going through. And it just completely
21:48
changed my whole outlook on life. All of a sudden,
21:51
all these material things did not matter. And
21:55
before, I had been chasing all of that stuff.
21:58
And so I'm thankful for that. I'm thankful that
22:03
I'm able to take all of this and turn it into
22:07
something good when I would not have before.
22:12
Yeah. Latoya, how do you support families in
22:17
that stage of, you know, that loss of identity
22:21
and the grief? The grief. The grief is bank.
22:25
The grief is very big. And we're supporting it
22:29
the whole way through, both for the parent and
22:31
the child. Like for me, myself, it has a lot
22:34
to do with supporting that child in the grieving
22:38
of what was to come. and the changes in that
22:42
they're experiencing. So it's hard enough to
22:44
be faced with a diagnosis that doesn't make any
22:48
sense to them because no matter what age you
22:50
are, you're like, no, I'm just supposed to be
22:52
going through these steps. Like I'm supposed
22:53
to like, you know, you're a baby, then you walk,
22:55
then you talk, then you do all these things.
22:58
Or you're, you know, in middle school and you're
23:00
watching, you're advancing, like you're. building
23:04
your social skills and your physical skills.
23:07
You're getting better at sports or you're finding
23:08
your way in art. You're really finding out who
23:10
you are. And then you're given this diagnosis
23:15
and everything is going to change. So it's helping
23:18
a child understand that. And it's okay for them
23:21
to also be super angry and tell me it is not
23:24
fair. Yeah, it's absolutely not fair. And I am
23:26
that person that will always say to them, this
23:28
isn't fair. And I am really sorry that I can't
23:31
change this, but what can we do to make this?
23:33
a little bit better for you? How can we cope
23:35
with this? So there's going to be so many challenges.
23:39
And as the PAC team, like as a whole, we work
23:43
to minimize those challenges and then focus on
23:45
maximizing joy. So what is it that this child
23:49
and this family really values and is important
23:51
to them? Let's shift our focus to that. Let's
23:55
shift our focus to making sure that whatever
23:57
time a child has, because we don't know if it
24:01
is. And Terry mentioned this, like, you actually
24:04
don't know for any person what the timeline is.
24:06
But we don't know if this family is going to
24:08
have a week with their child or treatments are
24:11
going to provide another 10, 15 years. But we
24:14
want to make sure that those moments that they're
24:16
having are meaningful and that they are focused
24:19
on what that family needs. So I hope kids just...
24:24
Go through the tough stuff. I'll answer the questions
24:26
that they have and I will find answers for the
24:28
questions that they have if I don't have them.
24:30
The one thing I always say to families and kids,
24:32
I said, I will always be honest with you. Ask
24:34
me what you what you want. And if I don't know,
24:37
I will look at you and say, I don't know right
24:38
now, but I have a great team that I work with
24:40
and we will find the answers for you. And who's
24:44
what kind of roles are in the pack? Yeah, for
24:47
sure. The PAC team is made up of, so there's
24:50
doctors who their focus is palliative care. We
24:54
have NPs, like nurse practitioners. We have clinical
24:57
nurse specialists. We have grief support. And
25:02
then we always have residents or fellows with
25:06
us that are learning and wanting to learn more
25:07
about palliative care. The interesting thing
25:09
about the PAC team, though, is that it is not
25:12
just contained to the hospital. The focus of
25:16
the PAC team is actually because we're wanting
25:18
you to be out there enjoying your life and keeping
25:21
things as per se normal for your family as possible
25:24
is it has the community support. So our NPs partner
25:29
with community teams in different areas, whether
25:32
it's Durham region, York region, the Barrie area,
25:35
wherever you may be, to provide a team that's
25:38
going to be supportive to you in your area while
25:40
still having access to the PAC team. So you have
25:42
the PAC team for everything you need. I'm the
25:44
lucky one that gets to go into homes and meet
25:48
these families and meet the children. And then
25:52
I take all my information back to the PAC team
25:53
and I'm like, I got to go to this house and this
25:55
is how well this child is doing. Because for
25:58
doctors and nurses, so often it's just they're
26:00
seeing that clinical piece. But with the PAC
26:02
team, we're trying to focus on this. Let's make
26:04
sure that we're creating like this wholesome
26:07
environment for a family to be living. So I'm
26:11
lucky that I get to go back and say, you know,
26:13
I was out here this week and I was able to see
26:16
this family. And then I'm also seeing things
26:18
that might be presenting like, hey, I'm noticing
26:20
that, you know, mom is really struggling with
26:23
this. Bring it back to the team. And the team's
26:25
job is to now reach out to mom, check in and
26:27
find additional supports. You know, Terry can
26:31
probably speak to how her experience was with
26:33
the PAC team. This is like so key because my
26:36
son Joseph does not want anything to do with
26:39
any of the doctors. So if he doesn't associate
26:43
Latoya with the hospital, then he can be her
26:45
friend. But when a doctor comes in the room,
26:49
he just shuts down. So he has a very close relationship
26:53
with his NP because she's been there. for you
26:56
know most of his journey and he has seen her
26:59
outside of the hospital we've been to hockey
27:02
games and they were there or like baseball games
27:04
and they were there and so he's seen her outside
27:06
the hospital so he sees her as a person but if
27:09
anyone else tries to come in and talk to him
27:11
he's like no you're part of the hospital like
27:14
no and so he does not talk to them at all but
27:18
it's so important to know like if they're outside
27:22
of the hospital then he knows oh you must care
27:24
about me in like a different way because he doesn't
27:27
always trust what the doctors are doing because
27:30
you know we've had a lot of hiccups where we're
27:32
trying different things to make his life easier
27:34
and it hasn't gone well so he doesn't have a
27:37
lot of trust and when he first started treatments
27:40
because he was one of the youngest he was having
27:43
a hard time with them like he would just throw
27:46
up and be dizzy and just, you know, sleep for
27:48
days. And we were trying to find that balance.
27:51
So, you know, his very first experience of the
27:53
hospital wasn't great. And so, yeah, there's
27:56
a lot of trust that he doesn't have with them,
27:58
even, you know, seven years later. So, you know,
28:01
there is a learning curve. And that's what I
28:04
think is so great about the PAC team. And also,
28:07
like what Latoya says, they don't lie to you.
28:09
Like sometimes you have to have some heavy truths.
28:12
And I had to be told, you've got to look at life
28:15
differently. Like what you might think is, you
28:19
know, important is not important to your son.
28:22
And so you have to like. go of that. My big thing
28:27
was we used to have these giant parties for my
28:30
daughter. She loved having people around. Well,
28:32
my son, because he's experienced vision loss
28:36
at a younger age, finds noise and people very
28:39
overwhelming. He also is very particular about
28:42
his toys and he's so worried that someone will
28:44
move them and he won't be able to find them.
28:47
So he doesn't want anyone at our home. And so
28:50
that was another loss that I had to get over
28:54
that, you know, we weren't going to be hosting
28:57
parties like that's not what he wanted. And that
29:00
was that was tough. Like it's all these little
29:03
things that do end up adding up. But it's when
29:06
you hear it from, you know, the team that knows
29:10
you, that knows your child. And then you're like,
29:13
you're right. I can find other ways. to bring
29:16
us all joy, but I do need to change my mindset.
29:21
And Carolyn, with Empower Simcoe, how are you
29:25
able to support in that grief and that loss of
29:28
identity as the caregivers, you know? Yeah, good
29:33
question. You know, it really is about caring
29:36
for the caregivers. You know, so many... So many
29:42
people are involved in medical teams and services
29:45
out there that surround the child with a diagnosis
29:48
or the person with a diagnosis. And, you know,
29:52
the focus for our family relief team is to ensure
29:57
that the caregiver is doing well. We want resilient,
30:00
healthy caregivers. You know, when you're healthy,
30:04
your kids are doing better too. Your loved ones
30:06
are doing better that you're caring for. So that's
30:10
the main focus for us. So we talk about respite.
30:14
Are you taking breaks? What does respite look
30:16
like? It's not the same for everybody. We're
30:20
aware of that piece. You know, Terry, you started
30:23
off talking about... the loss of friends, the
30:26
loss of colleagues. Caregivers are very isolated.
30:30
They aren't doing it on purpose. It's people
30:34
don't understand what they're going through.
30:36
They're no longer involved in community activities
30:39
the way they were going to social events, the
30:43
way that they were. You're guarded with the health
30:46
of your children, so you couldn't go to a lot
30:49
of community activities and risk them getting
30:51
ill. friends may step back you know they don't
30:57
want to they don't know what to say or they don't
30:59
know how to help um and when you can't bring
31:01
a solution you feel like you're not helpful to
31:04
the family and it's actually this piece uh that's
31:08
on on the friend where they they um They judge
31:12
themselves and feel as though if I can't help,
31:15
I better stay out of the picture because I might
31:16
just get in the way. When really you need them
31:19
to reach out and just say, hey, I'm still here.
31:21
How are you? And let's talk about something completely
31:24
different than your children. You know, so the
31:27
isolation is real. So we bring in programs that
31:33
can provide breaks. We have our hospitality program
31:37
where we offer breaks to caregivers. A lot of
31:41
the times caregivers aren't even thinking of
31:43
themselves and taking a break. It's not on the
31:46
agenda. So even introducing an opportunity for
31:51
a break, you know, our hospitality program runs
31:56
solely on donations from our community partners.
31:59
And we've heard from caregivers that just the
32:03
fact that people are donating. to caregivers
32:06
for a break and understanding what they're going
32:09
through, that awareness makes them feel seen,
32:13
makes them feel less isolated, makes them feel
32:15
supported. So we're happy to be able to offer
32:18
a program like Respitality. We also step in and
32:22
assist caregivers to connect with... independent
32:27
direct support providers through our pathway
32:30
to support program allowing them to hire supports
32:34
if they need extra time extra support in the
32:36
home or out in the community for their for their
32:39
children or their loved one and just generally
32:42
navigating them through the services to make
32:45
sure that they are you know understanding that
32:48
they need to come first their health needs to
32:51
come first you know we all hear about put your
32:53
oxygen mask on before you help others um and
32:56
that's that runs true for caregivers and so we're
33:00
here to just help them along with the journey
33:02
and um and and make sure they're caring for themselves
33:06
but does that look like for you terry when you're
33:10
i am programs i find that So I've been able to
33:16
like go to the spa for an afternoon. Thankfully,
33:19
it's around the corner from my house. And I've
33:21
been able to like spend a night at a hotel. That
33:24
was really nice to get away with my husband.
33:28
I had to learn that it's okay to have someone
33:32
else watch my child or take care of them. I think
33:35
that's the biggest hurdle. You're like, no one
33:38
knows them better than me, especially if they're
33:40
nonverbal. Like it is so hard because if you're
33:44
like, they can't let me know that they're not
33:47
enjoying this or this is not well. So understanding
33:52
that it's okay to have a nurse in your home so
33:55
that you could be a mom and they get to be the
33:57
caregiver. They get to focus on the medical,
34:00
like when the meds need, when the feed needs
34:02
to be made, all of that stuff. And that I can
34:05
just play with her and not feel guilty. that
34:08
I have someone in the house when I'm home. So
34:13
yeah, it's hard to take help. But then it was
34:20
life -changing when we got the right nurses in
34:24
our home that loved our kids as much as us. And
34:27
then I realized, oh, they actually have more
34:31
fun with them. Because we are so stressed. And
34:36
it's okay that they go and do things. My son
34:38
goes camping for three days with his respite
34:41
worker. And they love it. I don't enjoy camping.
34:44
And they have a great time. He'll do a lot more
34:48
things with her than with me. Probably because
34:50
I'm more on edge and I'm not able to relax. And
34:54
he just trusts her to do things. And it's the
34:57
same with my daughter. She was going to school
34:59
with a nurse. She was so close to her. They went
35:02
and did everything. And she enjoyed being with
35:05
her. And then I knew she's still out having fun.
35:08
People can provide that for my children. I don't
35:11
have to be that person 24 -7 because I think
35:15
there is this idea like my children have to be
35:18
happy. That has to be my role because that's
35:20
the only thing I can control. I can't control
35:23
the disease or the symptoms. Like I'm trying
35:27
my best, but I at least should make sure they're
35:29
happy. I had to get that out of my head. Like,
35:32
not all kids are going to be happy. Latoya can
35:36
tell you my son is very frustrated with the changes
35:39
that he's experiencing right now. And I just
35:42
have to let him sit with it. And it's very, very
35:45
hard as a parent to not be able to tell him it's
35:49
going to get better because it's not going to
35:52
get better. But I have to remind him of everything
35:54
he can do. And Latoya helps me. reframe it in
35:59
words that he will understand or resonate with
36:03
and she knows the types of things he's interested
36:07
in so she can tell me things that i can do to
36:10
you know distract him or help you know him when
36:14
he gets stuck in these sad sad days and when
36:17
he says i'm having a bad day i don't feel like
36:19
myself um since my daughter was non -verbal and
36:24
she was declining she declined quite quickly
36:27
she was very content she didn't know anything
36:31
else that she thought this was she didn't realize
36:36
that she was declining and because she was in
36:40
a wheelchair and she she looked like she had
36:45
a disease at school everyone loved her they wanted
36:48
to take care of her they wanted to baby her they
36:50
wanted to like sing her songs and and all of
36:52
that but With my son, he's not in a wheelchair.
36:55
He does use a walker. And he doesn't look like
37:00
anything's wrong with him. So he doesn't get
37:02
the benefit of the doubt that he might need extra
37:05
help or he's not cognitively where you are. And
37:08
I think that children have a hard time understanding
37:12
where to meet him. So it's like you need someone
37:16
to facilitate that. And right now we're finding
37:20
it's hard for him to have friends because they're
37:23
going and learning new things and, you know,
37:26
discovering themselves. And he's kind of back
37:29
at a different place with things he knows he
37:32
can do since he lost his vision. And kids don't
37:36
want to do that. And I mean, they can for a little
37:39
bit, but then, you know, they want to go on and
37:41
keep doing things that they're doing. And so
37:43
we're finding that a challenge, like, you know,
37:47
and I do see like other people, other moms totally
37:52
relate to this, like their children aren't finding
37:55
friends and not finding their people. And so
37:58
that I think that's one of. hardest things. And
38:02
then when you have something like Empower Simcoe
38:04
or you have the PAC team, then they're able to
38:06
kind of help you find your people that are closer
38:10
to you that are dealing with the same things.
38:13
And then you feel less alone. It's interesting,
38:18
Terry, when you were talking about your children
38:21
having fun with other people. I have a respite
38:26
planning workshop and the icebreaker of the start
38:30
of the workshop is that I ask everyone in the
38:33
room to pick up their pen. I'm going to tell
38:35
them the most important thing and they're ready
38:37
for the best advice ever. And I say, your children
38:39
or your loved one doesn't want to spend as much
38:41
time with you as you think, parent. They want
38:45
other people in their lives. And the story you
38:50
tell is so widely told to me from other people
38:54
who didn't. You know, couldn't see the benefits
38:58
of respite. They weren't ready to take a step.
39:01
You're right. It's not always a good fit the
39:04
first time. It does take a little bit to find
39:06
the right people. And then once you get the right
39:10
click of people and supports in your life, you
39:13
see a change not only in you, but your child.
39:16
They're having fun. They're experiencing different
39:19
people, different personalities. They're getting
39:21
a break from you where you need the break from
39:24
them. And, you know, caregiver guilt is the number
39:27
one reason that we hear that caregivers aren't
39:31
accessing respite is that they think, you know,
39:34
only I can do this or my child's going to wonder
39:37
or my loved one's going to wonder why I need
39:40
a break from them. Well, we all need a break
39:42
from each other. We need a break from our spouses
39:44
or partners. We need a break from our children.
39:46
We need a break from our colleagues. We need
39:48
a break from our parents. So, you know, it's
39:51
very natural, but we... As caregivers get into
39:54
this, it's my responsibility. I need to do this.
39:58
I know how they like things. I need to keep them
40:01
happy. And you put that entire burden on yourself.
40:04
And, you know, I'm glad that you mentioned that
40:06
because it really is a big piece. Well, it's
40:10
interesting because as you guys were both talking
40:12
there, it made me also think about the respite
40:15
piece and like the stepping away and how important
40:17
it actually is for the child. I always find it
40:20
strengthens the relationship between the two
40:22
because then that child's like, I did this on
40:24
my own. And it's one more little thing that they're
40:27
doing that somewhat like feels normal. So when
40:31
I hear Terry mention it, like Joseph's off camping
40:34
with his respite worker, when she told me for
40:36
the first time, I was like, what? But like, because
40:39
there's so many things that he doesn't want to
40:41
do without his family. And I'm like, so he's
40:44
out there doing things that. any other child
40:46
would be doing, going on a camping trip with
40:48
someone that he considers his friend and is his
40:51
friend, someone that he feels safe and trusts.
40:53
And then he has something to bring back to share.
40:57
But if you're always together, never have that
41:00
moment to bring something back to share. And
41:02
kids are so proud to share. So whether respite
41:05
is like, you know, away with his respite worker
41:07
or they're choosing a respite facility that the
41:09
family's been comfortable with and they've gone
41:11
away for a weekend, the family themselves and
41:13
this child has stayed. The child also feels like,
41:16
yeah, I'm doing this on my own. Like it's that
41:17
little bit of independence, a little bit of growing
41:20
up that they felt they've lost. And I love that
41:23
you say that, Latoya, because many times, you
41:28
know, we ask caregivers, when did you hear about
41:34
respite or, you know, why did you wait so long?
41:37
And we hear, well, we weren't in crisis yet.
41:40
Or we first heard about rest visit was introduced
41:43
to us when we were having the most challenging
41:45
time. And it's not about that. It's about putting
41:49
regular breaks and connecting your loved one
41:53
with other people and putting those supports
41:55
in place early and right up front and not waiting
41:59
for a crisis. You know, one caregiver gave us
42:04
some feedback and said, you know, taking a break.
42:09
made us realize that it's like filling our tanks
42:13
with fuel. If we are empty, there's nothing further
42:17
we can do. The car just doesn't run without the
42:22
fuel in it. And after taking a few breaks and
42:26
understanding the benefits of respite, we feel
42:28
like we're keeping that tank at least, we try,
42:31
about half full so that we know that we're in
42:33
a safe zone that we may not run out of gas, which
42:38
is a great announcement. for what caregivers
42:40
are struggling through and making sure that you
42:42
don't get to the empty tank. And that's for the
42:45
whole family. You know, everybody in the car,
42:47
when the car stops running, has to sit in, you
42:50
know, in this heat, in the hot car, waiting and
42:52
figuring out where to get the gas. It affects
42:55
the whole family. So making sure that there's
42:58
respite breaks and that there are supports put
43:00
in place early and you don't need justification
43:03
around why you need to put these supports in
43:07
place. the health and well -being of everyone
43:10
in the family. I have to say I felt happy to
43:15
know I could have a nurse in the home because
43:16
I was so scared of everything that I did not
43:20
know. And just having someone there that knew
43:24
what to look for, especially. I thought like
43:27
a seizure was like a full body type movement.
43:30
I did not realize that there was like 50 different
43:32
kinds and that she was experiencing different
43:35
ones and just having like a medical professor.
43:39
profession in the house that knew what to look
43:42
for, that could see, hey, I think this is going
43:44
on, things that I probably wouldn't have noticed.
43:48
And that just made her quality of life for my
43:50
daughter way better. And so it just kind of gave
43:54
me a sense of, you know, Just feeling more confident
43:58
about the decisions I was making because I had
44:01
an extra set of eyes from someone who had been
44:03
in this position before and knew what to look
44:06
for and to give me suggestions about medications
44:09
or maybe, you know, changing timing or what they
44:12
had done. And especially around like things that
44:15
you just don't realize. It's like all the equipment
44:17
and lifts and, you know, understanding how you
44:21
can make your life better because there's just
44:22
so much. And how would you ever know any of that
44:26
or what size diapers to get or, you know, just
44:29
simple things like that, finding adaptable clothes
44:32
or did you know there's adaptable snowsuits?
44:35
And, you know, and then being able to see that
44:39
you can rent or borrow equipment through like
44:42
CTN, like the Children's Treatment Network, Power
44:45
Simcoe, like that kind of stuff, just to like
44:47
try it out and that there is. these programs
44:51
that get them out of the house and they're they're
44:56
made for for kids that are having other issues
44:59
so you don't feel alone like there's these like
45:01
movie nights where the theater makes it where
45:03
the kids can run around you know so you don't
45:07
feel like you have to be beside your kid or make
45:09
them sit for an entire movie because everyone's
45:11
doing their thing you know it's just it's just
45:15
that That connection and feeling less alone and
45:19
then knowing that you have the support of an
45:26
actual nurse or the NP or the PAC team that are
45:30
coming into your home to make you feel more confident
45:34
about your decisions, keeping your home safe,
45:38
helping us with, oh, you should probably put,
45:39
you know. a ramp here or put something here to
45:43
keep him safe or you know you might want to put
45:46
this on the floor to help him you know just little
45:48
things like that that you just wouldn't think
45:50
because all day long you're just thinking about
45:51
a million different decisions and yeah I just
45:55
I really think that that part is underrated you
45:59
think it's just for your child but it's also
46:02
for you I probably want to talk about like after
46:07
I lost Claire that It does feel like as soon
46:15
as we lost Claire, I felt like my whole family
46:18
had kind of been ripped apart because all these
46:20
people that had been in my home 40 hours, 60
46:25
hours a week don't come. And this community that
46:30
you had around you, the doctors, the nurses,
46:33
all of that, all of a sudden, everything is gone.
46:37
It's very silent. I don't think that that's talked
46:41
about enough. And that's where you really need
46:46
to be able to be an advocate for yourself and
46:52
use the strength that you have for your children
46:54
to reach out to your friends and your family,
46:57
the people that aren't sure what to say, and
47:01
just say, I just need you to be here. And it's
47:05
okay that you don't know what to say. Like my
47:08
best friend moved in for a week, my in -laws
47:12
came in, but I just wasn't prepared for all of
47:15
a sudden all these things that I had around me
47:18
were gone. All these people that I had in my
47:21
life to take care of everything were gone. And
47:25
that's why I think it's important when you have
47:28
this respite care and you have the PAC team that
47:32
you're using that time to still keep your...
47:35
your supports around you those close friends
47:38
that close family because all of a sudden you
47:41
stop becoming a caregiver and you're like what
47:43
am I going to do Joseph didn't need as much when
47:48
Claire passed so I kind of felt like my identity
47:50
was kind of gone and then I'm like and then his
47:54
his symptoms started to go and then now I'm back
47:58
into that world but Now I am prepared for when
48:03
that day happens, that when I lose Joseph and
48:06
then I will not have a reason to ever go back
48:08
to the hospital, what those people look like.
48:13
And I still have a very close relationship with
48:17
all of Claire's nurses. They still come and visit.
48:19
We have lunch. We text. And it's a different.
48:27
type of relationship but it's a bond that's still
48:31
very very tight and it's the same with her doctors
48:34
I think you know even when Joseph is gone I still
48:37
feel that we will stay very very connected Claire's
48:42
neurologist she went to a different hospital
48:44
from SickKids she went to a different hospital
48:46
but she still comes to our home even after Claire
48:50
passed like once a year and we email all the
48:54
time and so It does change the relationship and
48:59
you will have to find new people, but there's
49:05
still ways to be connected. It's just, yeah,
49:09
I don't think that we talk about that part as
49:12
much. I think that's so important. And it's the
49:18
part that weighs the heaviest on me doing this
49:22
work is. You do. You're so surrounded. You're
49:27
so surrounded. And then your child passes away
49:30
and it's all gone. Like I've even had families
49:33
mentioned to me and I'm like I do follow ups,
49:37
especially with siblings. So because for the
49:40
sibling, it's even bigger. Like all of a sudden,
49:42
all these people have been here. Everybody's
49:45
gone. My sibling's gone. I'm overwhelmed with
49:48
all sorts of emotions. All the work I do ahead
49:51
of time, like trying to get them to understand
49:53
and coping tools, I don't expect them to understand
49:55
them in the moment. I say, as an adult, we don't
49:57
even know how to cope with loss. So when you're
50:00
younger, it's even more challenging. But kids
50:03
have pointed out to me and parents have pointed
50:04
out to me, it's even something as simple as like,
50:06
they're used to hearing the beeping from machines
50:09
and that's gone now. And it's like adjusting
50:11
to that and helping families. What does life
50:14
look like now? It's like that continuing bonds
50:18
piece too. You've lost your child. You've lost
50:21
your sister or brother. It's like, how do you
50:23
still stay connected and move forward? That's
50:27
a big part of the work that I do. But what Terry
50:30
talks about saying that, you know, the caregivers
50:32
are like, this was my life. Like, I got up every
50:36
morning. I checked blood sugars. I went through
50:38
monitors. I checked in with my team. I went to
50:41
sick kids. I was living in this state of being
50:43
like, what next? Like, what do I got to do? And
50:46
now you wake up and there's nobody there. Like,
50:49
I don't have to do these things. I have to fill
50:51
this time. So I think a really big thing is like,
50:55
Terry says, like maintaining connections with
50:58
people from before. Like, she knows that now,
51:01
but I totally understand why you didn't know
51:02
that in the beginning, because this is the first
51:05
time anybody's doing this when you're experiencing
51:07
this with a child. You know, like you have the
51:10
resilience and that you're able to know that
51:13
you're going through this again. And you're like,
51:15
I am maintaining these bonds. I am having these
51:17
respite. breaks, um, so that you are able to,
51:21
to, to navigate this, um, in a different way
51:25
this time, but it's, it's, I don't have the words
51:29
to describe how challenging it is. Um, and how,
51:33
what you said is so real, like, and I see it
51:36
and I feel for families when I'm, when I know
51:40
that time is coming in them, it's so important
51:42
to the PAC team that someone is checking in,
51:45
uh, because it is a very lonely time. You know,
51:51
with our family relief program, one of the things
51:57
that we really changed recently was to really
52:02
examine our programs and services with a caregiver
52:06
lens, which means that they need to be caregiver
52:09
-driven services. And just in this conversation
52:14
here, we find that, you know, Terry, we learn
52:17
from you. Organizations learn from the caregivers
52:20
that we are supporting, the children that we're
52:23
supporting, the people. You're the ones that,
52:27
you know, this is your lives and what your experiences
52:30
are. And all we can do is adjust and pivot how
52:34
we provide service to meet. your needs and so
52:38
you know here I am taking notes as you're like
52:41
yeah and you know we're working on a caregiver
52:44
hub launching it as soon as we can and Terry
52:47
came out to a focus group that we had and provided
52:50
really valuable insight on you know how do we
52:53
help caregivers navigate through things what
52:56
are some great tip sheets that we can have how
52:59
do we create peer support groups to allow people
53:02
just to have a space where they land on a kid
53:05
on a page that is a caregiver hub and you go,
53:09
oh, this is for me. You know, here's where my
53:12
people are and be able to stay there. And, you
53:15
know, and I actually took a note here on tip
53:21
sheets for you to give to friends and family
53:24
on how to support me best. You know, I'm going
53:27
through this because we look back to that very
53:29
beginning conversation that we had that people
53:32
tend to avoid situations that they're uncomfortable
53:36
in and therefore or if they can't come up with
53:39
your solution to your life they back out and
53:42
then we find ourselves with very isolated and
53:45
and a lot of gaps in social connection and then
53:51
when you get to this point it's how do we reconnect
53:54
and again that's placed on you I need to get
53:58
out there and reconnect I need to find people
54:01
how could we have kept them all along so I think
54:04
it's a great opportunity to have this discussion
54:08
and provide something to people where they say,
54:12
I don't know how to help my friend. She's going
54:15
through a lot. And we can say, here you go. Here's
54:18
a little tip sheet. Stay with me. Text me once
54:22
in a while. Ask me out for coffee. Force me out
54:26
of my life because I need to get out of the bubble
54:29
and see the sun once in a while. Mm -hmm. That
54:34
is hugely helpful because, yeah, just, you know,
54:37
being on the outside, I feel exactly the same.
54:40
Like whether it's, you know, people going through
54:42
a difficult time or interacting with death and
54:44
grief, it's like, I don't know what to do. Like,
54:47
I don't know how to help, you know? It's so true.
54:50
And it becomes really challenging for friends
54:53
and family because they also feel this guilt
54:56
that they're like, oh, you're going through this
54:58
and I don't know how to help you. Or they have
55:01
the, why your child and not mine? Like, oh, I
55:05
feel bad because my child's like, I can't, like
55:08
they're healthy, you know? So I don't want to
55:10
like come around and make you feel bad. So I
55:14
think the idea of something where you can just
55:16
be like a tip sheet or anything that, you know,
55:19
gives people some knowledge in how to be a supportive
55:24
person. Because I think people want to be, you're
55:26
right. They just don't know what to do. Yeah.
55:29
And I think that's where people will default
55:32
is it's to them. It seems better to just not
55:35
like I don't want to make it worse. So I'm just
55:37
going to not, you know, that's not necessarily
55:40
the what people want, you know, so. It's like
55:44
when my friends that are moms that have healthy
55:47
kids will start every sentence. I know it's not
55:50
anything like you're going through, but I have
55:54
been dealing with this and this and this. And
55:55
I'm like, you don't have to. Preface every sentence
55:59
with that. Like you, this is what you're dealing
56:02
with. This is what the hardest thing that's been
56:04
for you. It doesn't make it any less, you know,
56:08
stressful. And I'm still there as a friend. I'm
56:11
not over here thinking, oh my God, that's stupid.
56:14
Like, you know, I did have two toddlers and I
56:17
thought this is so exhausting. What am I doing?
56:20
And they weren't even sick. Like I understand
56:25
parenting is hard. And I don't think that you
56:29
can ever, you know, look at another family and
56:32
compare. Like, that's crazy. Well, you know,
56:36
it kind of goes with, as I said, Empower Simcoe,
56:40
a very large component of our organization is
56:42
community living. And we work very closely with
56:46
people with intellectual disabilities. And, you
56:49
know. And there's times where people will say,
56:53
well, you know, I don't want to take advantage.
56:55
You know, Carolyn wanted to buy me a coffee,
56:57
but no, no, no, no. I'll buy the coffee all the
56:59
time. And if you take away the respect and the
57:03
dignity of being able to buy someone a coffee
57:05
or to be able to listen to your friend talk about
57:09
their toddlers being a pain or how difficult
57:11
it was to go out and pick a prom dress with their
57:14
daughter, they're taking away your ability to
57:18
be a friend. And it's just another piece of the
57:21
pie. puzzle as a caregiver that you're struggling
57:23
with is that you know people don't want to just
57:26
have a normal conversation with me and the opening
57:30
line always is you know how's Joseph when it's
57:35
more around hey did you see the episode of whatever
57:38
yesterday or you know let's talk about just the
57:42
typical things people talk about it doesn't have
57:44
to you know surround my family all the time.
57:48
But we get so isolated as caregivers that that's
57:52
the only stories we have if we don't go out and
57:55
do other things. So please help us tell other
57:58
stories. Yes, yes, yes. Totally agree. 100%.
58:04
Thank you so much for listening to our conversation.
58:13
Right now, one in four Canadians are caregivers,
58:15
and that number is expected to grow to one in
58:18
two. If you think back to everything that Terry,
58:21
Latoya and Carolyn shared today about the paperwork,
58:25
the isolation, the identity that gets reshaped
58:27
overnight, this is not a rare experience. It's
58:31
something almost every one of us will either
58:32
live through or watch someone we love live through.
58:36
So if there's one thing to take from this episode,
58:38
it's this. Organizations like Empower Simcoe
58:42
and the PAC team at SickKids want you to reach
58:44
out at the very beginning of your caregiving
58:46
journey. You don't need to have all the answers.
58:49
You don't need to have enough information. You
58:52
don't need to have it figured out. They are more
58:54
than willing to help support you, point you in
58:57
the right direction, and connect you with the
58:59
right people. You do not have to do this alone.
59:03
Thank you for listening to the entire episode.
59:06
All the links and info you heard in this conversation
59:08
will be featured in the show notes on our website.
59:10
If you'd like to know more about anything we
59:12
mentioned in this episode, make sure to check
59:14
villagermagazine .ca slash podcast. If you enjoyed
59:18
this episode, please leave us a review on Apple
59:20
Podcasts, Spotify or wherever you're listening
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episode. Thanks again and I'll see you next time.