April 24, 2025 • 28 mins
Informal or natural supports are care that is provided as part of a relationship, unpaid and outside of particular organizations or structures. It's what we build relationships from and a deep part of being human. Formal supports are the paid caregivers who do specific tasks at specific times as part of a paid job within some kind of organization. For example: A parent providing care for their own child is informal support, and a teacher at a preschool provides formal support. Formal supports cannot replace family care, but they can wrap around the whole dyad or family to support the meaningful, loving care which happens informally. Donna Thomson is a co-author of a study on the interaction between formal supports and informal.
Donna Thomson is a caregiver, author and award-winning educator. She is the mother of two grown children, one who has severe cerebral palsy and medical complexity. Donna also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014). Donna is a co-founder and Co-Director of CanChild Family Engagement in Research Program and she facilitates the Caregiving Essentials Course, all at McMaster University. She currently sits on the advisory board of the Canadian Centre for Caregiving Excellence where she won the inaugural Vickie Cammack Trailblazer Award.
Read more about the study on Donna's Blog
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
Donna Thomson is a caregiver, author and award-winning educator. She is the mother of two grown children, one who has severe cerebral palsy and medical complexity. Donna also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014). Donna is a co-founder and Co-Director of CanChild Family Engagement in Research Program and she facilitates the Caregiving Essentials Course, all at McMaster University. She currently sits on the advisory board of the Canadian Centre for Caregiving Excellence where she won the inaugural Vickie Cammack Trailblazer Award.
Read more about the study on Donna's Blog
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
[Music]
(00:10):
Welcome to Love Doesn't Pay the Bills.
I'm Lisa Chutey.
I am a family caregiver.
My guest today has written a book called The Four Walls of My Freedom.
Lessons I've Learned from a Life of Caregiving,
which to me is such an intriguing title,
and I am so excited for this conversation.
Donna Thompson also went on to do research together with Heather Aldersey,
(00:37):
and it's on a similar subject that we're here to talk about,
which is the ways in which natural supports and formal supports interact.
And I want to lay a little bit of groundwork with the difference between natural supports
or informal supports and formal supports.
(00:59):
I think most of us are probably familiar with those terms,
but if we are not natural or informal supports,
or what a family caregiver would be,
it's a person who's unpaid and outside of any structure
that is providing support in the context of a relationship and a life path.
(01:19):
And the formal support would be somebody who is providing something as a paid job
within some kind of structure and organization.
And in my mind, you know, I do, a lot of you might be saying,
"Oh, natural supports."
It really already have a thing about this conversation in these terms.
(01:41):
For me, natural supports, you know, when it means me, by myself, that's not okay.
And you can't just expect somebody to do up to 24/7 care,
without pay and without relief sometimes and additional other supports.
And I think there's a real conversation to have here between those various types of supports,
(02:10):
how they can work together and serve ultimately the people who need care.
So welcome, Donna. I am so pleased that you're here.
Oh, thank you so much for having me.
It's a real pleasure to be here and have this conversation.
Yeah. Let's start with a little bit of your personal caregiving experience.
Would you mind sharing the brief version of that story?
(02:35):
So I am one of those people who is a lifelong caregiver.
And I think some of us are, I guess, born under that star.
My caregiving really began when I was a teenager and my father at a very young age had three strokes
and lost his speech and mobility.
(02:56):
And I was living at home with my mom.
My sister was away at university.
And so I had some caregiving responsibilities, just keeping the household going,
helping my mom the best I could, keeping my dad company.
It was a painful time and we didn't know really how to talk about it in those days.
(03:23):
And my dad died in 1975.
Then in 1988, our son Nicholas, our first born, was born with cerebral palsy and medical complexity.
So we basically ran a home ICU kind of setting for him for 23 years.
(03:44):
And then he moved into a nearby medical group home where he receives one to one 24/7 nursing
care. More recently, my sister and I helped to care for my mom who lived to the age of 96.
And about the last 10 years of her life where she was lived with dementia and moved into assisted
(04:07):
living. And my sister and I tag teamed with her care. So there'd been a lot of caregiving.
Much of it when my son was living with us at home, of course it was impossible to work outside the
home with his level of needs and constant crises. He's had many surgeries, over 100 hospitalizations
(04:33):
in his life. So much of the time when he was living and very unstable were kind of in the waiting,
waiting for the next crisis was our way of life. So if I understand you correctly, you started out as
a teenager as a caregiver for a parent, a young teenager, your child, your a medical mama,
(04:57):
so we speak. And I don't know if you use that term, but I've been taking to it. And then a sandwich
generation caregiver on top of that with your mother as well. Yeah, so that could be very overwhelming.
And what are some of the things that made that work? Well, you know, I would say in a large part
(05:24):
it didn't work because it was it was overwhelming. And we went through a prolonged peel process
to get a higher level of funding for home care. You know, I would say that Nicholas, our son is 36 now.
(05:44):
And as I say, he moved out of our home at age 23. I think if we had not kind of hit bottom and gone
through an appeal process that existed then and does not exist where we live now, by the way.
So God knows what would have happened to us if we'd been in the same situation now. I don't know,
(06:08):
but we did eventually win an appeal for a much, much higher level of support.
Nicholas, at that time, I'm going to just take a quick pause to point out that many of my listeners
will be in the U.S. you are in Canada. So it is a different formal system and absolutely very
different. And it also varies province to province as it does in the state state to state.
(06:32):
So it was very individual where we lived in Canada in the province of Ontario.
And as I say, it was a local appeal process, which we finally won after a great deal of pain
and suffering, I would say, going moving through this appeal. Nicholas during this time was deemed
(06:54):
palliative. We went on palliative care. His health was failing. We were especially me, I would say.
My husband still was managing to work, thank God. But I was not okay. I was just not functioning.
(07:15):
A few people would be okay, really, in the situation nobody would be.
But when someone is at risk of their mother making a medication error due to fatigue and you're dealing
with opioids at home for pain and multiple seizure medications, etc. This is just too risky.
(07:42):
And I was trying to defend the worth of my son's life and to the government to give us some help
because certainly that level of care, as you know, as many of your listeners know, it's not sustainable
by one person for one thing. But it's not sustainable, privately funded either. It's just too expensive.
(08:07):
So who could afford that, especially on one salary in the family? Nobody. We couldn't.
So in any case, we were very fortunate to be able to get a care package that did support my son's
needs. Nonetheless, it's still lots of people cancel their shifts at the last minute. You still have
(08:29):
to step in. There is all of that, but there is a lot more help. Once people see the need and the
worthiness and also commit to helping. But I will say that when I reflect on the worst of times in our
(08:51):
family, one of the most helpful things was from a friend. And this friend brought a cooler, a picnic
cooler and put it on my front porch and filled it three times a week with food. Yeah. Wine. She even put in
(09:14):
like hair decorations. Fun things. Put in my hair with the flower on it. Yes. That's a good friend.
Real friendship. And I'll never get over that. That made me laugh, made me cry, made me felt seen,
supported and no paid service could do that. Yeah. That was a huge gift. So I think going back to
(09:43):
your original thoughts about the research study that Heather Alder, C and I and others did,
I would say that one of the central questions for us was, what can families and essential
friends do for a person with disabilities that paid carers cannot? And what can paid care givers do
(10:08):
that families cannot? Yeah. So we wanted to pick that apart. And as you can imagine, there was a
plenty of discussion about where the lines blur. For example, our son Nicholas, he has plenty of
paid care givers who are also his friends. Yeah. Yeah. It's an intimate kind of work. And often
(10:33):
even the paid caregivers do kind of, if they start as a paid caregiver, cross that line into being
a friend as well, or sometimes there's also this thing that happens where people turn themselves or
call themselves as friends when they're really just paid support workers. But we've had a few that
(10:53):
really genuinely in my daughter's life, or a her family members are her paid caregivers right now,
be the non-family caregivers that we've had were the ones that worked out were largely people we
met otherwise. We didn't meet them because an agency recruited them or something. We met them because
they were a neighbor or a friend or a friend of a friend or that kind of thing. And then when they
(11:20):
started working with us, the ones we didn't know to start with, we grew pretty close to one or two of
them as well. The whole family did. We're going to take a break now. Please stay right here and we'll be
right back. Thank you for sticking around. We continue our conversation. And I wanted to
begin to this back and forth in crossing lines. And what do you see as the proper or ideal relationship
(11:45):
between formal supports and informal supports, or does it vary by individual? Is everyone going to
put together their own sort of combination? I think that it varies person to person. And it's
interesting because the three organizations that we used in the study to look at their constituencies
(12:09):
and how they were configuring the right balance of paid and natural support. And those three
organizations share the same values around the relationships are the key to a safe and good life.
Our loving relationships give us quality of life, personal safety, and they give us the opportunity
(12:39):
to participate meaningfully in the community. So for family caregivers that are listening,
that's you. That's what you're doing. You are making that quality of life meaningful life possible
and safe life. We absolutely are. And though I think every parent like me, like you, Lisa, we worry.
(13:02):
What will happen to my son or daughter after I die? After we die if there are two parents in
the in that supportive there are even kids who for whatever reason don't have those parents or
fragile figures, quote unquote, naturally in their life. So it's very important how those formal systems
(13:25):
robust and comprehensive and work even in the absence of an informal support or help build back
the informal support. Yeah, I think one of the three organizations, we looked at all play some kind
of a role in maintaining the integrity of a circle of natural support and supporting that even
(13:50):
after the parents die or you know if there's no family on the scene. So you're talking about
building a circle that would include other friends or somewhat to make sure that that circle of
informal or natural support is goes beyond one or two parents. Yes, I think you know we know that as we
(14:14):
age I just turned 70 yesterday. Happy birthday. Thank you. And so as we age we're confronted with
these massive fears about what do we do? What do we actually do? How do we keep it going
for our son and the case of our family? We ensure that Nicholas has all the money he needs for
(14:41):
his discretionary spending in order to have a life. We ensure that something he planned last week
actually gets followed through this week. We are later today in a little while now we're meeting
with his admin team at his home where he lives and we'll be going through a whole long agenda
(15:02):
of future planning and there are just so many things that we do. Art from phoning his room every day
and listening to his dreams helping him plan. We understand his efforts to communicate best.
So he tells us that he wants to be an ambassador for our local NHL hockey team, a community ambassador
(15:30):
and he did his research and he knows they don't have a disabled ambassador for for fans with disabilities
and he post that to the team. He could do this job. So we help him with this in ways that his paid
caregivers cannot because he has too many staff who are rotating constantly. Yeah. So the continuity
(15:56):
of care is a big role that we play and happy to play it but how's that role going to be filled
after we're gone? Yeah. We need to figure that out and we know that natural care in his life is
the accountability, the transparency, the follow through, it is the creativity, it's the belief in him
(16:27):
that he can do something more than just receive care and we also act as translators for him and
we broker his relationship to the world. We present him to the world in the best possible way.
And so these responsibilities can they all be rolled into his paid care? No, they cannot.
(16:53):
Not effectively. He has friends. He's very popular guy. He's a lot of fun. But there will always be
an essential role for the natural care in his life. The people who love him want to be with him,
want to check in, want to follow through, follow up, check up. Has this happened? It's interesting because
(17:20):
that's true in many cases. In other cases when it comes to, you know, it's easy to say casually,
I have a lot of friends and like there might be in some sense natural supports maybe on occasion,
they even do some particular tasks or something, but they're not necessarily as reliable in some ways
(17:42):
as a paid caregiver to show up on a certain shift on a certain day to be there to get certain tasks done.
And it's that interplay that really seems to make things work where there's somehow aspects of both.
And you mentioned accountability and I think that's really key thing that's happening there is
(18:05):
a multi-tiered, multi-independence views of each other that are all working towards the goal of
somebody living their best life and being safe and having all of their needs met.
So, where we are concerned and I will speak now in an ideal world.
The only tasks that we would want next friends to perform would be tasks related to
(18:35):
shared interests in doing fun things. So, they wouldn't be anything to do with what he needs to get done
in order to get through the day as somebody with severe cerebral palsy.
Nicholas wants to organize hockey or sports betting pools. This is one thing he does.
So, he gets all the family, the guys and the family, friends, uncles, they all bet 10 bucks.
(19:03):
And Nicholas is the commissioner of the betting pool. So, this requires administration to organize
this. He needs a friend to do that. Right. And so, we assign somebody in the family. Well, currently,
it is my husband and my brother-in-law who helped him organize this. But we wouldn't expect his
(19:30):
caregivers, his nurses, to do that with him. Right. So, part of this is organic and a personal
decision about who's going to do what and what's appropriate for this paid role. It's interesting
in the state of Oregon anyway with DSPs, one of the things that are sometimes written into the roles
(19:50):
of these paid positions, depending on how the ISPs written and so forth. And of course, it does happen
where maybe a neighbor comes over because you only need one... You just need an errand where
something's picked up at the store for you or something like that and you can take care of yourself
the rest of the day or something and those are needs that might happen informally as well. So,
(20:11):
it's again, it still crosses. In our life, we're kind of like the three family members of my daughter
that live in the household with her are pretty much doing everything with occasionally hired
non-family when we can find them and that's more of the respite situation and we all get excited
(20:34):
for it because it's a new person to come in and do something different for my daughter and as far
she's concerned. And it's the time off for all three of the rest of us together. So, there's just
such an interesting... I think there's so much more we could say and discuss about... And you've done
(20:55):
this whole research project on obviously about this interplay, this, this, and this back and forth
and roles being defined even in different ways for different people. Yeah. And listening to you,
I'm just thinking, you know, that maybe the better question is, what do you want natural care in your life
(21:15):
to do and to be? What do you want that paid care to be? Because if you talk to people with disabilities
who... Many people with disabilities who do not have an intellectual disability, they're not in the
sort of developmental services world, they simply need physical assistance to get through the day and
(21:42):
do what they want to do. Yeah. Their paid care, they don't want a relationship with paid care. They consider
them, you know, absolutely like in the same way that, you know, I'm paying somebody to do my dry
cleaning. I don't want to be friends with a person who does my dry cleaning. Right. It's a very
(22:05):
black and white in that situation. Very, and it's a different situation than somebody that has IDD
or that has intellectual disability that may have quite different needs and may have quite a
different approach or understanding to how they feel about getting those needs met or want those
needs met. In my daughter's case, she's kind of gets very close to almost everybody that she encounters
(22:32):
anyway and so it's always going to be a relationship and a pretty personal thing with everybody and
she will try to have the fairly personal conversations with like the checkout clerk store and so forth.
And you know, that's something that there needs to be some boundaries there that we actually actively
work on, you know, appropriate lines, but it's a different person and a different approach to life
(22:58):
and different needs than somebody that has a purely physical disability.
It is a very much a personal thing, but I think that the question that's at the heart of our research
is to show the worth of natural care, loving relationships and also figure out how that can be supported.
(23:20):
Yeah, because I think if you ask what the burden of natural care is on families, some families will say,
you know, the care that the loving care that I and my are, you know, our crew of inner circle family
(23:43):
and maybe one best friend in there talking about the closest people. We could use some support
because it's a lot that we are doing and we do it because of love and necessity and we just,
you know, I think making a case for that support, it can't always be replaced by paid care.
(24:10):
It needs in and of itself to be supported.
Yeah, does your research indicate what are some of the most effective supports around family caregivers?
I mean, there's, there's pay, there's respite times, there's some people talk about wanting or needing
training or education. What kinds of things do you see as as effective supports around a family
(24:37):
like that? And I've talked about the nesting doll idea on this program and I think it's similar to
what you're getting at. And in my mind, it keeps sticking that scene in Lord of the Rings where
they're so tired, they're almost there to throw the ring and say, I'm going, I can't carry the ring,
but I can carry you and it picks them up and it's that help in the way you can help. You know, if it's
(25:00):
not direct, maybe there's something around the situation that could be helped.
Absolutely. Yeah, you could cut the grass. Yeah, yeah.
But, you know, I think Dr. Heather Aldersey, the principal investigator on this study will speak
much more eloquently to this question. Yeah. But I think basically in a nutshell, we just looked at
(25:29):
the ways and means of three different organizations and that the way they were endeavouring to support
natural care. Okay. So, and each of them does it a little bit differently. So, Heather, we'll tell you
all about that and it's a very interesting question and all three organizations also just said, we're not,
(25:52):
we don't have all the answers. We're not perfect. And so, a nice honest approach like that's that's
great honesty and clarity. Yeah. So, we need to do more research into this because what exactly
(26:13):
and we know that it's not going to be one size fits all for whatever families want or need in the
way of support to keep it all going with what it is they're doing that they don't want paid
caregivers to do. Right. But, I think it's also, it was very interesting because we also looked at
(26:35):
what to paid people in this sector think that families need and we ask paid caregivers, what do you
think you can do to support the care that the family is giving? And so, these are all very interesting
questions with an ultimate goal of trying to figure out what is the right balance for people
(27:00):
to decide for our family. This is the right balance of paid care and unpaid care. And how can both
of those areas be supported to do the best job they can do for my son or daughter and our family?
So, it was a very interesting study to participate in and we are using it now to advocate for a national
(27:30):
strategy for caregiving in Canada. So, research can also be a great tool for policy and advocacy.
Yeah, absolutely. That's, yeah, I see some other things happening in the US as well. Would you like
to just say where people can find more about you? And I will put it in the show notes as well.
Oh, thank you so much. I have a blog that's called the caregiver's living room and it's Donna Thompson
(27:58):
and there's no P and Thompson. Donna Thompson.com. Thank you so much. It's been a pleasure and I really
appreciate it. This is Love Doesn't Pay the Bills. I'm Lisa Chitty. If you've enjoyed the show, please tell a friend.
[Music]
[Music]
(00:10):
Welcome to Love Doesn't Pay the Bills.
I'm Lisa Chutey.
I am a family caregiver.
My guest today has written a book called The Four Walls of My Freedom.
Lessons I've Learned from a Life of Caregiving,
which to me is such an intriguing title,
and I am so excited for this conversation.
Donna Thompson also went on to do research together with Heather Aldersey,
(00:37):
and it's on a similar subject that we're here to talk about,
which is the ways in which natural supports and formal supports interact.
And I want to lay a little bit of groundwork with the difference between natural supports
or informal supports and formal supports.
(00:59):
I think most of us are probably familiar with those terms,
but if we are not natural or informal supports,
or what a family caregiver would be,
it's a person who's unpaid and outside of any structure
that is providing support in the context of a relationship and a life path.
(01:19):
And the formal support would be somebody who is providing something as a paid job
within some kind of structure and organization.
And in my mind, you know, I do, a lot of you might be saying,
"Oh, natural supports."
It really already have a thing about this conversation in these terms.
(01:41):
For me, natural supports, you know, when it means me, by myself, that's not okay.
And you can't just expect somebody to do up to 24/7 care,
without pay and without relief sometimes and additional other supports.
And I think there's a real conversation to have here between those various types of supports,
(02:10):
how they can work together and serve ultimately the people who need care.
So welcome, Donna. I am so pleased that you're here.
Oh, thank you so much for having me.
It's a real pleasure to be here and have this conversation.
Yeah. Let's start with a little bit of your personal caregiving experience.
Would you mind sharing the brief version of that story?
(02:35):
So I am one of those people who is a lifelong caregiver.
And I think some of us are, I guess, born under that star.
My caregiving really began when I was a teenager and my father at a very young age had three strokes
and lost his speech and mobility.
(02:56):
And I was living at home with my mom.
My sister was away at university.
And so I had some caregiving responsibilities, just keeping the household going,
helping my mom the best I could, keeping my dad company.
It was a painful time and we didn't know really how to talk about it in those days.
(03:23):
And my dad died in 1975.
Then in 1988, our son Nicholas, our first born, was born with cerebral palsy and medical complexity.
So we basically ran a home ICU kind of setting for him for 23 years.
(03:44):
And then he moved into a nearby medical group home where he receives one to one 24/7 nursing
care. More recently, my sister and I helped to care for my mom who lived to the age of 96.
And about the last 10 years of her life where she was lived with dementia and moved into assisted
(04:07):
living. And my sister and I tag teamed with her care. So there'd been a lot of caregiving.
Much of it when my son was living with us at home, of course it was impossible to work outside the
home with his level of needs and constant crises. He's had many surgeries, over 100 hospitalizations
(04:33):
in his life. So much of the time when he was living and very unstable were kind of in the waiting,
waiting for the next crisis was our way of life. So if I understand you correctly, you started out as
a teenager as a caregiver for a parent, a young teenager, your child, your a medical mama,
(04:57):
so we speak. And I don't know if you use that term, but I've been taking to it. And then a sandwich
generation caregiver on top of that with your mother as well. Yeah, so that could be very overwhelming.
And what are some of the things that made that work? Well, you know, I would say in a large part
(05:24):
it didn't work because it was it was overwhelming. And we went through a prolonged peel process
to get a higher level of funding for home care. You know, I would say that Nicholas, our son is 36 now.
(05:44):
And as I say, he moved out of our home at age 23. I think if we had not kind of hit bottom and gone
through an appeal process that existed then and does not exist where we live now, by the way.
So God knows what would have happened to us if we'd been in the same situation now. I don't know,
(06:08):
but we did eventually win an appeal for a much, much higher level of support.
Nicholas, at that time, I'm going to just take a quick pause to point out that many of my listeners
will be in the U.S. you are in Canada. So it is a different formal system and absolutely very
different. And it also varies province to province as it does in the state state to state.
(06:32):
So it was very individual where we lived in Canada in the province of Ontario.
And as I say, it was a local appeal process, which we finally won after a great deal of pain
and suffering, I would say, going moving through this appeal. Nicholas during this time was deemed
(06:54):
palliative. We went on palliative care. His health was failing. We were especially me, I would say.
My husband still was managing to work, thank God. But I was not okay. I was just not functioning.
(07:15):
A few people would be okay, really, in the situation nobody would be.
But when someone is at risk of their mother making a medication error due to fatigue and you're dealing
with opioids at home for pain and multiple seizure medications, etc. This is just too risky.
(07:42):
And I was trying to defend the worth of my son's life and to the government to give us some help
because certainly that level of care, as you know, as many of your listeners know, it's not sustainable
by one person for one thing. But it's not sustainable, privately funded either. It's just too expensive.
(08:07):
So who could afford that, especially on one salary in the family? Nobody. We couldn't.
So in any case, we were very fortunate to be able to get a care package that did support my son's
needs. Nonetheless, it's still lots of people cancel their shifts at the last minute. You still have
(08:29):
to step in. There is all of that, but there is a lot more help. Once people see the need and the
worthiness and also commit to helping. But I will say that when I reflect on the worst of times in our
(08:51):
family, one of the most helpful things was from a friend. And this friend brought a cooler, a picnic
cooler and put it on my front porch and filled it three times a week with food. Yeah. Wine. She even put in
(09:14):
like hair decorations. Fun things. Put in my hair with the flower on it. Yes. That's a good friend.
Real friendship. And I'll never get over that. That made me laugh, made me cry, made me felt seen,
supported and no paid service could do that. Yeah. That was a huge gift. So I think going back to
(09:43):
your original thoughts about the research study that Heather Alder, C and I and others did,
I would say that one of the central questions for us was, what can families and essential
friends do for a person with disabilities that paid carers cannot? And what can paid care givers do
(10:08):
that families cannot? Yeah. So we wanted to pick that apart. And as you can imagine, there was a
plenty of discussion about where the lines blur. For example, our son Nicholas, he has plenty of
paid care givers who are also his friends. Yeah. Yeah. It's an intimate kind of work. And often
(10:33):
even the paid caregivers do kind of, if they start as a paid caregiver, cross that line into being
a friend as well, or sometimes there's also this thing that happens where people turn themselves or
call themselves as friends when they're really just paid support workers. But we've had a few that
(10:53):
really genuinely in my daughter's life, or a her family members are her paid caregivers right now,
be the non-family caregivers that we've had were the ones that worked out were largely people we
met otherwise. We didn't meet them because an agency recruited them or something. We met them because
they were a neighbor or a friend or a friend of a friend or that kind of thing. And then when they
(11:20):
started working with us, the ones we didn't know to start with, we grew pretty close to one or two of
them as well. The whole family did. We're going to take a break now. Please stay right here and we'll be
right back. Thank you for sticking around. We continue our conversation. And I wanted to
begin to this back and forth in crossing lines. And what do you see as the proper or ideal relationship
(11:45):
between formal supports and informal supports, or does it vary by individual? Is everyone going to
put together their own sort of combination? I think that it varies person to person. And it's
interesting because the three organizations that we used in the study to look at their constituencies
(12:09):
and how they were configuring the right balance of paid and natural support. And those three
organizations share the same values around the relationships are the key to a safe and good life.
Our loving relationships give us quality of life, personal safety, and they give us the opportunity
(12:39):
to participate meaningfully in the community. So for family caregivers that are listening,
that's you. That's what you're doing. You are making that quality of life meaningful life possible
and safe life. We absolutely are. And though I think every parent like me, like you, Lisa, we worry.
(13:02):
What will happen to my son or daughter after I die? After we die if there are two parents in
the in that supportive there are even kids who for whatever reason don't have those parents or
fragile figures, quote unquote, naturally in their life. So it's very important how those formal systems
(13:25):
robust and comprehensive and work even in the absence of an informal support or help build back
the informal support. Yeah, I think one of the three organizations, we looked at all play some kind
of a role in maintaining the integrity of a circle of natural support and supporting that even
(13:50):
after the parents die or you know if there's no family on the scene. So you're talking about
building a circle that would include other friends or somewhat to make sure that that circle of
informal or natural support is goes beyond one or two parents. Yes, I think you know we know that as we
(14:14):
age I just turned 70 yesterday. Happy birthday. Thank you. And so as we age we're confronted with
these massive fears about what do we do? What do we actually do? How do we keep it going
for our son and the case of our family? We ensure that Nicholas has all the money he needs for
(14:41):
his discretionary spending in order to have a life. We ensure that something he planned last week
actually gets followed through this week. We are later today in a little while now we're meeting
with his admin team at his home where he lives and we'll be going through a whole long agenda
(15:02):
of future planning and there are just so many things that we do. Art from phoning his room every day
and listening to his dreams helping him plan. We understand his efforts to communicate best.
So he tells us that he wants to be an ambassador for our local NHL hockey team, a community ambassador
(15:30):
and he did his research and he knows they don't have a disabled ambassador for for fans with disabilities
and he post that to the team. He could do this job. So we help him with this in ways that his paid
caregivers cannot because he has too many staff who are rotating constantly. Yeah. So the continuity
(15:56):
of care is a big role that we play and happy to play it but how's that role going to be filled
after we're gone? Yeah. We need to figure that out and we know that natural care in his life is
the accountability, the transparency, the follow through, it is the creativity, it's the belief in him
(16:27):
that he can do something more than just receive care and we also act as translators for him and
we broker his relationship to the world. We present him to the world in the best possible way.
And so these responsibilities can they all be rolled into his paid care? No, they cannot.
(16:53):
Not effectively. He has friends. He's very popular guy. He's a lot of fun. But there will always be
an essential role for the natural care in his life. The people who love him want to be with him,
want to check in, want to follow through, follow up, check up. Has this happened? It's interesting because
(17:20):
that's true in many cases. In other cases when it comes to, you know, it's easy to say casually,
I have a lot of friends and like there might be in some sense natural supports maybe on occasion,
they even do some particular tasks or something, but they're not necessarily as reliable in some ways
(17:42):
as a paid caregiver to show up on a certain shift on a certain day to be there to get certain tasks done.
And it's that interplay that really seems to make things work where there's somehow aspects of both.
And you mentioned accountability and I think that's really key thing that's happening there is
(18:05):
a multi-tiered, multi-independence views of each other that are all working towards the goal of
somebody living their best life and being safe and having all of their needs met.
So, where we are concerned and I will speak now in an ideal world.
The only tasks that we would want next friends to perform would be tasks related to
(18:35):
shared interests in doing fun things. So, they wouldn't be anything to do with what he needs to get done
in order to get through the day as somebody with severe cerebral palsy.
Nicholas wants to organize hockey or sports betting pools. This is one thing he does.
So, he gets all the family, the guys and the family, friends, uncles, they all bet 10 bucks.
(19:03):
And Nicholas is the commissioner of the betting pool. So, this requires administration to organize
this. He needs a friend to do that. Right. And so, we assign somebody in the family. Well, currently,
it is my husband and my brother-in-law who helped him organize this. But we wouldn't expect his
(19:30):
caregivers, his nurses, to do that with him. Right. So, part of this is organic and a personal
decision about who's going to do what and what's appropriate for this paid role. It's interesting
in the state of Oregon anyway with DSPs, one of the things that are sometimes written into the roles
(19:50):
of these paid positions, depending on how the ISPs written and so forth. And of course, it does happen
where maybe a neighbor comes over because you only need one... You just need an errand where
something's picked up at the store for you or something like that and you can take care of yourself
the rest of the day or something and those are needs that might happen informally as well. So,
(20:11):
it's again, it still crosses. In our life, we're kind of like the three family members of my daughter
that live in the household with her are pretty much doing everything with occasionally hired
non-family when we can find them and that's more of the respite situation and we all get excited
(20:34):
for it because it's a new person to come in and do something different for my daughter and as far
she's concerned. And it's the time off for all three of the rest of us together. So, there's just
such an interesting... I think there's so much more we could say and discuss about... And you've done
(20:55):
this whole research project on obviously about this interplay, this, this, and this back and forth
and roles being defined even in different ways for different people. Yeah. And listening to you,
I'm just thinking, you know, that maybe the better question is, what do you want natural care in your life
(21:15):
to do and to be? What do you want that paid care to be? Because if you talk to people with disabilities
who... Many people with disabilities who do not have an intellectual disability, they're not in the
sort of developmental services world, they simply need physical assistance to get through the day and
(21:42):
do what they want to do. Yeah. Their paid care, they don't want a relationship with paid care. They consider
them, you know, absolutely like in the same way that, you know, I'm paying somebody to do my dry
cleaning. I don't want to be friends with a person who does my dry cleaning. Right. It's a very
(22:05):
black and white in that situation. Very, and it's a different situation than somebody that has IDD
or that has intellectual disability that may have quite different needs and may have quite a
different approach or understanding to how they feel about getting those needs met or want those
needs met. In my daughter's case, she's kind of gets very close to almost everybody that she encounters
(22:32):
anyway and so it's always going to be a relationship and a pretty personal thing with everybody and
she will try to have the fairly personal conversations with like the checkout clerk store and so forth.
And you know, that's something that there needs to be some boundaries there that we actually actively
work on, you know, appropriate lines, but it's a different person and a different approach to life
(22:58):
and different needs than somebody that has a purely physical disability.
It is a very much a personal thing, but I think that the question that's at the heart of our research
is to show the worth of natural care, loving relationships and also figure out how that can be supported.
(23:20):
Yeah, because I think if you ask what the burden of natural care is on families, some families will say,
you know, the care that the loving care that I and my are, you know, our crew of inner circle family
(23:43):
and maybe one best friend in there talking about the closest people. We could use some support
because it's a lot that we are doing and we do it because of love and necessity and we just,
you know, I think making a case for that support, it can't always be replaced by paid care.
(24:10):
It needs in and of itself to be supported.
Yeah, does your research indicate what are some of the most effective supports around family caregivers?
I mean, there's, there's pay, there's respite times, there's some people talk about wanting or needing
training or education. What kinds of things do you see as as effective supports around a family
(24:37):
like that? And I've talked about the nesting doll idea on this program and I think it's similar to
what you're getting at. And in my mind, it keeps sticking that scene in Lord of the Rings where
they're so tired, they're almost there to throw the ring and say, I'm going, I can't carry the ring,
but I can carry you and it picks them up and it's that help in the way you can help. You know, if it's
(25:00):
not direct, maybe there's something around the situation that could be helped.
Absolutely. Yeah, you could cut the grass. Yeah, yeah.
But, you know, I think Dr. Heather Aldersey, the principal investigator on this study will speak
much more eloquently to this question. Yeah. But I think basically in a nutshell, we just looked at
(25:29):
the ways and means of three different organizations and that the way they were endeavouring to support
natural care. Okay. So, and each of them does it a little bit differently. So, Heather, we'll tell you
all about that and it's a very interesting question and all three organizations also just said, we're not,
(25:52):
we don't have all the answers. We're not perfect. And so, a nice honest approach like that's that's
great honesty and clarity. Yeah. So, we need to do more research into this because what exactly
(26:13):
and we know that it's not going to be one size fits all for whatever families want or need in the
way of support to keep it all going with what it is they're doing that they don't want paid
caregivers to do. Right. But, I think it's also, it was very interesting because we also looked at
(26:35):
what to paid people in this sector think that families need and we ask paid caregivers, what do you
think you can do to support the care that the family is giving? And so, these are all very interesting
questions with an ultimate goal of trying to figure out what is the right balance for people
(27:00):
to decide for our family. This is the right balance of paid care and unpaid care. And how can both
of those areas be supported to do the best job they can do for my son or daughter and our family?
So, it was a very interesting study to participate in and we are using it now to advocate for a national
(27:30):
strategy for caregiving in Canada. So, research can also be a great tool for policy and advocacy.
Yeah, absolutely. That's, yeah, I see some other things happening in the US as well. Would you like
to just say where people can find more about you? And I will put it in the show notes as well.
Oh, thank you so much. I have a blog that's called the caregiver's living room and it's Donna Thompson
(27:58):
and there's no P and Thompson. Donna Thompson.com. Thank you so much. It's been a pleasure and I really
appreciate it. This is Love Doesn't Pay the Bills. I'm Lisa Chitty. If you've enjoyed the show, please tell a friend.
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