How To Build Capacity As A Caregiver w/ Susan Ackland

In this episode of The Caregivers Podcast, Host Dr. Mark sits down with Susan Ackland, a psychotherapist with decades of experience who has spent the last 10 years navigating the complexities of caring for a mother with Alzheimer’s and a father-in-law with Lewy body dementia, all while raising children and maintaining her professional practice.

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What is The Caregivers Podcast?

The cost & courage of caring - stories that spark resilience.

Welcome to the Caregiver's

Podcast.

I'm your host, Dr.

Mark.

We're here for another exciting

episode.

Our guest today is Susan Ackland.

She's a psychotherapist with

decades of experience helping

people navigate work, identity,

meaning, and suffering.

For the past 10 years, she's also

been caring for her mother with

Alzheimer's disease while raising

children,

sustaining a marriage with a

father-in-law with Lewy body

dementia, and continuing to work.

This episode is not about avoiding

suffering.

It's about what caregiving does to

a person and how you stay intact

while inside it.

We are going to talk about the

tipping point where caregiving

stops being something you do and

starts becoming who you are.

Then we're going to map the stages

from normal life to endless tasks

to suffering settling in, and

finally, to collapse or

recalibration.

Susan, thanks so much for being

here today.

Susan Ackland, we're so happy

you're here today joining us at

the Caregiver's Podcast.

Welcome, and let's jump right in.

You know, looking back over the

last 10 years, you've had lots of

reflections.

When you think to what's the first

mistake almost every caregiver

makes in week one, and what could

it potentially cost them?

Susan Ackland, that's actually

kind of a hard one, because it

sort of took me back to the, like,

I just realized how much I didn't

know, right?

Like, how much I couldn't have

seen coming.

Someone says a diagnosis, right?

And suddenly you're in a new

category, and you don't really,

and you just don't know what it

means.

And there was shock, too.

So I think, I don't know, the

mistake, not knowing, being naive.

But, I mean, sometimes, you know,

it's different people process

shock or the unexpected nature of

things in different ways.

But is there some sort of a

reaction to it, or a cognitive

trap, if you will, that sets the

stage for much higher costs down

the line from your experience,

from having, you know, met clients

over the years, and from your own

perspective?

Are there certain things, and now

you look back at how we react to

those changes that would advise,

just don't go there.

Let things unroll.

You might surprise yourself how

competent you are to deal with the

little steps.

Then I would say, realize much,

much sooner that you are going to

have to be your own, your person's

advocate, and make no assumptions

about how the healthcare system is

going to help you navigate through

any of it.

It's amazing how much we are

called to manage that element.

I mean, caregiving is not just

within the funnel of the

individual.

It's within the spectrum of the

individual and how they, for the

rest of their lives, interact with

the outside world.

And a big part of that will be the

healthcare system.

You know, it's not just, when you

think about caregiving, just that

one endless to-do list.

But it's also that sort of

constant psychological pressure

that mounts as you take on the

role of caregiver.

What do you think, looking back,

and again, through the course of

your career, having worked with

different individuals, what can

new caregivers do to sort of brace

themselves so they don't fall

apart under that progressive

psychological strain?

So I think, and this isn't going

to be anything, I don't think this

is revolutionary, but I mean, you

have to build capacity in all

different kinds of ways.

And I think that for a lot of

people, it's doing it alone.

There's a real, there is a

loneliness to caregiving, for

sure.

But building capacity, being able

to ask for help, understanding

resilience, resources, like there

is so much to building capacity.

But that is, that's probably like

the most important thing.

And I mean that in terms of your

internal capacity to manage, how

you care for yourself, to

literally the people that you can

rely on, to knowing, to knowing

what's out there, help seeking,

like all that.

Like that's the.

It seems like there are lots of

things that, you know, lots of

letters in the word capacity and

lots of things you need to do to

actually achieve capacity.

What are some of the first key

moves you need to make in terms of

mindset to approach what's coming?

So you don't get in that trap.

What would you, what would you

think?

You know, I think it's interesting

because you're asking a, a kind of

a generic question.

And I think everyone's situation

is, is quite different, right?

And I think it depends on what,

who you are caregiving for.

Is there a time limit to it?

Is there a, is it a short-term

crisis of caregiving?

Is it a.

You're right.

Like Alzheimer's is what I think

of.

And actually it's not my term.

I read it somewhere and I just

thought it was so good.

It's a long, slow crisis with an

ever changing playing field.

And the amount of problem solving

involved, cognitive problem

solving to preserve someone's

dignity and their independence and

their quality of life, not even

independence, quality of life is

better.

The amount of problem solving and

the ever changing, it is something

new all the time.

So you can never really.

Because it's not scripted, right?

It's, it's, it's entirely.

The furthest thing.

It's entirely unscripted.

And the, and people's image of

Alzheimer's, which is someone not

knowing who you are, is like the

end stage.

It does not describe the years and

years of grumbling, um, cognitive

decline where you are trying to

figure out how do you maintain

this person in this situation?

And how do you, um, and just this,

like the minute problem solving, I

joke sometimes like this, the

tasks of caregiving are sometimes

they're hilarious, right?

How am I going to get this person

to eat a leftover in the fridge

when they, um, can't, when they

don't see it in the fridge?

I'm going to have to call them,

get them to walk to the fridge,

open the door, look for the

leftover, talk them through

putting it in the microwave,

wait for them to press the button,

to turn it on, to heat it up, take

it out, get the fork, okay?

And at any moment in that series

of, of tasks, they can muck me up

by something else happens and they

leave the room and they forget and

I'll find the leftover in the

microwave.

So you're really, you're really

functioning at a level of intense

granularity of every step of the

task as a caregiver in those

moments.

And at that point, that's a, what

I think of as, um, we will talk

about this later, but the doing

with, not the doing for, how do I

do this with the person?

How do I help them?

And, um, so there's a ton of that

long before you get to the place

where they don't know your name

or, um, where it's advanced in

that way.

So the capacity building is like,

I think of it, like, I think

there's a lot of cognitive

capacity of like figuring out

everything.

Absolutely.

And completely different from the

instant overnight caregiver, for

example, when there's been some

acute event, which, um, affects

someone's cognitive capacity or

their physical capacity.

And then you need to take on the

lead to getting them through that,

whether it's a permanent effect or

whether it's, uh, something that's

short term, your, your mindset may

shift differently.

But here you can, you really

spelled out this long runway

until, uh, things potentially get

to that maybe more stereotypical

of, oh, no one remembers me

anymore.

I don't remember them and there's

a really tangible changes, but

that, that whole lead in, and you

know, that I could see how that

would in caregiving, especially in

an individual with progressive

dementia over time.

That you'll eventually reach a

tipping point as a caregiver and,

you know, it's initially you're

doing the things that a caregiver

does, but then you reach that

point where you realize like, oh

my God, caregiving is who I am.

Like I, like that is now taking

over things and everything sort of

gets harder after that.

Have you noticed a transition in

your own life from that sort of

initial runway to things sort of

intensifying?

And then you're sort of saying,

I'm like, I'm not just doing this.

Like, this is a big part of who I

am now.

I think.

Or maybe they're, maybe they're

individuals who, who gravitate

towards that realization much more

quickly and, and not saying that

it has for you, but maybe you've

seen, or in, in your journeys,

seen clear different paths that

people take.

Again, where they reach that

tipping point a lot sooner and

curious to know what, um, what

distinguishes those two different

pathways.

I was thinking when you were

talking about how, like, I'm a

parent, right?

I'm a parent, I'm a therapist, and

I'm a caregiver to my mom.

So I'm a caregiver in, in, in

different ways in my life forever,

right?

For a long, long time.

And there are different roles.

And I think a lot about how

caregiving for my mom, what, how

is that different or different

than being a parent?

being a parent, right?

And how is that different from the

beginning to where we are now?

Um, there are some things that are

very similar, right?

As my mom has lost capacity.

There's more things that become

the way I was with my, with my

children.

Um, and then there's some

differences, right?

Even at, even with my mom's

advanced dementia, she still makes

her bed in the morning.

Okay.

Which my nine-year-old might not

have, right?

But, um, in terms of identity, I

think that's the, when, there's a

question you, when I was reviewing

your questions, there's one

around, um, thinking about the

things, sort of the worst parts or

the things that you think about

that are.

And I think that, in my journey

anyways, it's always been clear to

me that I have to be more than

this.

That the fear or the, the, I have

to be more than a caregiver to my

mom.

And that's actually probably the

part that's the most terrifying is

that that could be my whole life.

And, yeah, and it can't, it cannot

be my whole life because I, I

just, I just can't do that.

Like, I can't, that can't be my

whole sense of my identity.

And it isn't.

And I'm lucky because I have a

professional identity.

I have other things in my life.

If I were to be, if my whole life

were to be caregiving my mom, I, I

just don't, I don't think I could

be well and do that at this, in

that way.

And a lot of people start well and

end up unwell as it takes over.

But what are the checks and

balances?

I mean, I've heard lots of stories

and I've spoken to more and more

people whereby that security net

is just not there.

And that all of the other

identities are very vulnerable to

the gravitational pull of

caregiving.

What makes it different for, let's

say, you being able to keep those

other elements distinct versus

other individuals who get

swallowed up by caregiving and

everything falls by the wayside?

Is it a mindset?

Is it, is it your previous

experiences?

Is it your professional work that

informs you differently?

Because I've seen individuals get

completely swallowed up.

I think, I think when I think

about my process, I think you dip

in and out of that sometimes,

right?

Like you talk about tipping

points.

I don't think there's one tipping

point in a 10 year journey.

I think there are many tipping

points where you hit a wall and

you think something needs to

change or I can't, I can't do this

in this way anymore.

So, for me, I was thinking a lot

about the role of work in all of

this and I think that work

actually is protective for me

because work is a place I go and a

thing I do that is separate and I

get to focus in and use different

parts of my mind and I get to

remember that I'm a person

separate from that other

experience.

And I think my, my work in a way

is protective and it's also a

challenge, right?

Because it has, it comes with, um,

but I think my work makes me

somebody who's very attentive to

my own process.

And I have, and I have been, now

having said that, there's not a

lot of space for that in this

journey.

And that's something that I really

reflected on when I read your

questions because a part of me was

like, wow, these questions are all

about me.

And so often in a caregiving

journey, it's all about the other,

you're, you're just, it's all

about the other person, right?

It's all about helping my mom in

this case to have a good life as

long as we can.

Same time, there's so, so much

attention is now on trying to

preserve some of the vital

elements of the caregiver in that

journey too.

So they're left with some footing

at the end of it because

caregiving is not always a

lifelong journey.

But getting back to work, do you

think work has taught you to be a

better caregiver?

I think, I think being a therapist

and a caregiver is kind of a

blessing and a curse.

Want to tell me more about that?

Yeah, I think that, I think the

blessing is that, um, I have a lot

of, so I have the benefit of

having watched and supported other

people through their caregiving

journeys.

Okay, so I've watched, supported,

listened, helped, talked about

boundaries, tried to understand

boundaries, tried to, to look at

what is personal and what is

systemic and, you know, name those

things for people.

Because that, I think that's

something else that I thought

about a lot when I read your

questions was, these are personal

questions, but there's a systemic

aspect to my experience of

caregiving, right?

To middle-aged women caregivers,

right?

To a healthcare system that

doesn't have solutions, where I'm

forced to, like, I feel like I

have been the, um, every part of

this journey has been, feels like

to me, in spite of, like, you go

to get help, you try to find what

you need, and it's just not there.

Or you don't even, you're figuring

out what you need.

Yeah, you're sort of, you're,

you're, you're building the plane

while you're trying to fly it, and

there is that, and this has come

up before as well, where you've

got that default that sort of

falls back onto the caregiver.

Well, you'll figure it out, right?

Right, exactly.

And so the, so the blessing part

of my work, I think, is, is the,

um, sort of the part about, I

mean, I have learned a lot over

the years about, I know lots about

chronic stress, and I know lots

about burnout, and I know, like,

my professional development and

experience has given me all of

that to be able to, hopefully,

identify my own signs and

symptoms, to be able to avoid some

of the potholes.

You can't avoid all of them,

though.

Like, you just can't, because

you're, um, you're so busy doing

all the tasks that sometimes, uh,

you, you lose yourself, you lose,

um, you're just so busy doing that

you don't, and then something

happens, right, that reminds you

that you need to, like, a health

crisis, or your own, like,

something happens in your own

life, and you think, crap, I can't

do this in this way anymore.

Or, there's some, that's why I was

saying there's, like, I think

there's, like, all these different

tipping points.

Um, I think that the, the harder

part, maybe, of being, I, and it's

just me, maybe other people would

feel differently about this in my,

but, uh, as a therapist, like, I

think you have an acute

sensitivity to other people.

And to other people's experience,

and, which is wonderful.

I love my mother, and I have a

wonderful parent, also part of my

caregiving story, too, right?

Because I know that everybody's

experience is not that, that's not

the baseline that they're coming

from.

And that's a very different

complexity to caregiving.

Um, but, um, but I think having

that acute sensitivity is hard.

The other part is managing people.

There's so much managing people in

this journey.

Like, I think I'm grateful that I

have as much lived experience of

managing difficult people, so that

I can navigate all of the many

relationships.

People, I, I describe them as, as

people who are tools to need.

That I need them to get the thing

that my mom needs, or to get

through this process.

Um, they're not, they're not

exceptionally helpful, but I need

them.

And I have to manage the

relationship in order to get to

the end.

And I think that, being a

therapist, you have, like, a

million different kinds of people,

right?

And difficult relationships and

challenges and things like that.

And I think that's given me some

skills.

Well, you can imagine how, in an

individual, a caregiver who's less

experienced in some of the finer

moves of managing individuals,

some of their challenging

personalities, when the goal is a

positive outcome for the person

you're caring for, that they might

be really be disadvantaged in that

situation.

Or the task of caregiving is just

that much more onerous, but.

Yeah.

And recognizing, knowing what your

triggers are, right?

Like, part of being a good

therapist is knowing what your

stuff is, and what's going to get

activated by another, by a client,

or a situation, or a story, or

whatever.

And that's something we all carry

in all parts of our lives.

And I think, I'm not saying I'm

perfect at it, that I don't get

activated, but I think I know some

of them, and so I can sort of

separate out what's happening in a

situation from my own, from my own

reaction.

And there's been plenty of, plenty

of opportunity to practice that.

It becomes a skill set over time,

as well, you hope, because those

little challenges that crop up

don't seem to be going anywhere.

You know, people sometimes call

caregiving a life sentence.

How do you stop yourself from

believing that your life is going

to be over until the person you're

forced to care for, or have to

care for, moves on and dies?

That's a hard one.

That's a really hard one.

Sonny, when you even say that, I

get that there's like a sensation

in my, like I can feel the feeling

in my stomach.

I think that you try not to, you

can't think too far ahead, is the

answer.

You just can't go there.

Like, I try not to go there.

I try to deal with what's in my

control in the present, and trying

to have a life in the here and

now, and recognize what that is,

and name those things for myself.

So, these are the ways I have a

life in the present.

I try not to spend a lot of time

in the, like, in the grief and

loss part of like, of what you

thought a certain part of your

life was going to be like, or the

things that you, and I work really

hard at trying to, trying to still

have the things, use creativity

and imagination and figuring and a

million things to, to try to have

the things that I want so that I

don't have to spend time.

Because, you know, resentment,

envy, anger, all those things

really just tell us about what are

needs, unmet needs, right?

That's all they are.

So, I think if you think about it

like that, I try really hard to

name those things and try to

figure out how I can have a piece

of what I, what I need.

Yeah, and if there is a little bit

of suffering from something that

maybe won't be part of what you

had hoped would be part of life or

the journey, you can accept that,

maybe more than that, but also

pass it on and let it flow through

and then refocus on the now.

And sometimes those things are,

those things are also, something

happens in you.

I can think of a particular thing

that I wasn't able to, to

participate in and to do.

And it was one of those weird, it

was just, it was a big deal to me.

Like it, and it was a turning

point for me around, we need more

help.

Like there has to be more help.

Because it's not okay to, it's,

it's like, this is something that

feels really not okay.

Tell me more, what did that feel

like?

There's someone listening out

there.

We've got such a range of people

on different, different

trajectories of caregiving who

tune in.

And what did it feel like for you?

Like in that moment and in those

leading dark times where you were

really mourning, not being able to

do something or that's, or

accepting to somehow accept that

something wasn't going to happen.

I'm like, what's the experience of

that?

Um, I think it was this, um, there

was anger and powerlessness, both

those things together.

And because, and I think, and I

think it was that this is the time

in my life when I, and I think

when we start to say shoulds,

that's a problem, right?

This is the time in my life when I

should have been able to do X and

I missed out on something really

important.

And I, and I was just, it was just

sad and depressing.

And, and I thought, and that, and

it, but it galvanized me into

action.

Like it made me think,

Okay, like this isn't, this isn't

healthy.

Like I need to figure something

out.

I need to, we need to widen, widen

the circle of, of support to try

to facilitate this because this, I

don't think this was good for, for

me.

And more of it is not going to be

good.

I mean, it takes strength to

galvanize.

I think about steel reinforcements

when, uh, of someone's skill set

or toolbox.

What if we don't have that skill

to galvanize?

Does powerlessness lead to

helplessness or a sense of

helplessness?

See, to the antidote to

powerlessness is, is choice,

right?

Making choices, taking action.

And for some people, that's the

part that's really hard for them.

You know, when I think about, it's

really hard for them to see

themselves able to do that.

You know, when I think about

people's personal stories, their

histories and their caregiving

journeys,

like you bring whatever, um,

strategies you used to survive in

your family, um, to live through

that, whether or not that was

people pleasing or being small or

avoiding conflict or taking too

much responsibility or setting no

boundaries or too many boundaries.

You carry all that into your

caregiving relationship, right?

Like most relationships, right?

Well, into all, into all

relationships, into your

workplace, into your family

relationships, your friendships,

like it's all, it's all there.

But I guess what I'm saying is, so

someone's ability to, to galvanize

themselves into action is going to

relate to all of that, right?

Not just, but when you are, when

you are exhausted, like I can

think this, I fell prey to this, I

think particularly in the period,

like my kids are young adults now,

but you know, they were like, it

was a busy parenting time.

And there's just so many tasks to

do with work, home, kids, my mom,

that you can get into like, my, my

image is always like, life can be

like wampum all.

You're just trying to do this all

the time.

I remember that game with them.

Yeah, I remember that.

Exactly.

And you get into doing mode, which

is not thinking mode.

And I think at some of those

periods, that's when I've lost,

like, I haven't had the energy and

this is what I, where I have tons

of empathy for people who can't,

who have, who have difficulty.

Difficulty finding ways to take

action is you just get exhausted,

literally exhausted from like

attention exhaustion.

First of all, switching all the

time between task to task.

Maybe we'll talk later about work

disruption, what that's like when

you're a caregiver.

Well described.

Yes.

And, but I think you can get so

tired that you just don't have

like the idea of trying to figure

something out even to do for

yourself.

Like people talk about self-care,

right?

You have to have some energy for

self-care.

Yeah.

Or some space.

Some energy left to even, you

know, look after your partner and

be there for your partner and the

way they need you.

And, you know, you can't live as a

caregiver in isolation.

And there's always the concern of

the marital strain that comes with

caregiving as well.

Absolutely.

And that can be either a

protective factor or a, or a

vulnerability.

Susan, caregiving seems to follow

a pattern.

And the more I learn about it, the

more I sort of see it, you sort of

start in normal life and then it

becomes endless tasks.

As you alluded to earlier, that

sort of hit the mole game where

you're just trying to do

everything, where you get to that

tipping point.

And then potentially it becomes

your identity.

And I think individuals are really

vulnerable in some instances to

that happening.

Others may have certain strengths,

which allow them to navigate that

risky time.

But then ultimately suffering can

settle over everything.

And there's that potential moment

of collapse or recalibration.

So was there a recalibration event

or does that journey, that sort of

path that I'm describing, does

that apply to your journey as

well?

Yes, I think that because it's

such a long, slow decline, I feel

like the tipping points, I can

think of different tipping points

where I feel like I hit the wall,

and then something had to change.

I think the combination, like very

recently, actually, my primary

support person had overnight was

unavailable.

So we went from like a person who

was in this journey,

with me to literally in 24 hours,

they were unavailable and

entirely.

And we, you know, didn't have a

lot of, a lot of support.

And this is quite recently.

And suddenly, and it would it

really the part that really hit me

in that moment was, like,

cognitively, I always knew it was

kind of like a house of cards.

Like we were in this situation

where I used to sort of think, oh,

something happened to them,

something happened to me.

Like, where would this all

go?

Well, it's not just a plug to hold

you?

Well, it's not just a plug to hold

you.

It's actually a nurtured

relationship that's built on

trust, consistency, and, you know,

deliverables.

How vulnerable we were, how

vulnerable we were in the, in the

process and how, how little there

was between us and everything

falling apart.

And how did you, how have you

dealt with that?

Well, it was a really hard time.

Like, it was a very, it was very

difficult.

And again, I think it resulted in,

I got to figure this out.

Like, I got to, I got to, we need,

we need more help.

I can't, like, short term and long

term.

And actually, I should say that is

probably one of the biggest

challenges is, how do you care

give for someone where the

enormous number of things there

are to do?

Like, I made a list.

It's endless.

And plan for the long term future.

And plan for the short term

future.

Like, it's, it's insane.

And it's the reason why things

don't always, sometimes things get

away from you because you

literally can't do it all.

And work.

And is that the future, when you

say that the short term and long

term future, is that of the care

recipient or your own as the

caregiver and in your own other

relationships with your children,

your partner, your workplace?

No, I think, I think, I mean,

short term, like, when you're,

when you're caring for someone,

and it's just you, and then maybe

you're putting things in place to

support you in the short term.

But in the long term, you know,

there's going to need to be a

bigger solution of something.

You know, that eventually this

band-aid solution approach isn't

going to work.

And you need to have some backup

plans when you can no longer maybe

maintain the person where they are

or do things like that.

And there, that process of the

help seeking process, finding

people, finding supports, putting

things in place, short term, is

excruciating amounts of work for

sometimes almost no gain.

That could be another story about

that.

But, and then the long term

picture.

What about when you can no longer

do this?

What about when the person, you

can't maintain them where they

are?

So, I guess what I'm saying is

that, that moment recently where

suddenly it was like, okay, we are

super vulnerable.

And I, and it affected me.

I mean, I felt vulnerable.

Like, that's, I felt vulnerable.

And I could see where, like, and I

think that's been the case.

Those, those tipping point moments

have all been where I'm like,

something's going to happen to me.

Like, I need to take care of,

like, there's a realization that I

can't continue on as I am.

Because it's impacting my health

in some way.

It's showing up.

Like, the impacts are unavoidable

and showing up.

And I can pretend that

everything's, I can keep going.

Like, you have to, right?

Like, that's the, the piece about

caregiving is the, the keeping

going part.

But sometimes you're faced with

the real in your face signs that

this is not, like, something's not

okay.

And I, I'm just, I gotta do

something different.

But it's about your ability to

realize that.

And from your experience, the

inability to realize that, what's

the biggest obstacle to that?

Is it guilt?

Hmm.

Normalizing, normalization.

Like, you're doing it for so long

that it starts to feel like, it

just starts to feel normal.

Like, this is, you lose complete

perspective on what you're

actually doing.

And I actually don't think I'll

really know how this has impacted

me until after my mom's gone.

So is it like, because of the

normalization, we forget how to

look after ourselves?

Or we forget that there's a choice

for ourselves?

Or is it just that there's no room

for it to begin with?

Because some people do set certain

boundaries and are able to sort of

come up with some element of

self-care, and many others aren't,

and they feel like the odds are

stacked against them.

And nothing worse than hearing

some pundits say, you need to take

care of yourself.

How can you do your job if you're

not taking care of yourself?

It's like, just too easy to say.

I think, yes, that whole put on

your, what's that, put on your

oxygen mask first kind of thing.

I think, it's funny, I had a

discussion with a client about

individual responsibility and

systemic responsibility, because I

don't want people to feel blamed

in their caregiving journey.

Like, you're doing the best job

you can, and we're going to look

at ways you can, at ways we can

pull back some energy into you,

but there's a whole lot of

realities to the situation that

can't be solved by a kale smoothie

or a bubble bath.

Yeah.

And I don't want people to feel

that they're to blame now.

So, digging into what makes it

hard for people to set boundaries,

or why self-care is harder for

others, that gets into other parts

of people's stories, right?

Why is it hard for some people to

rest?

Why do people have expectations of

themselves?

Why do people struggle?

I think there is a busyness factor

and the doing factor in caregiving

that it's just like a, and there's

creep.

You know what I think of

caregiving creep.

That's a good way to think about

it.

Like you start, you start doing

something and then like,

especially with, within the

situation of something like a

neurodegenerative or cognitive

decline situation.

At first, it's just like this.

You're helping a little bit this

way or that way.

And then something shifts and you

take on more and then something

shifts and you take on more and

more and more and more and more.

And it happens kind of slowly

until suddenly I realized, you

know, two years ago, my, my mom

was kind of starting.

She could start the laundry and do

that.

And now she's not doing that

anymore.

And I'm doing the whole thing.

Is that the beginning of the wear

down sequence?

That sort of first phase where you

sort of start, you amass certain

things and then you hit that, oh

man, I'm being worn down.

There's something happening here.

This is not as I thought it was

going to be.

And there's, there's, there's, I

think sometimes you're getting, I

do think when you're, because

caregiving is about someone else.

It's about focusing outside of you

all the time that you can just

lose, lose touch with how you

feel.

And with what's it's, you know

what you can, it can become one of

the things that I thought about

was that awful feeling of when you

feel a bit robotic, you're just

doing, but you're not really

connecting like to yourself or

sometimes even maybe to the other

person.

So as that robotic reality sort of

sets in and you're entrenched in

your caregiving role, you know,

often we hear about how loss, a

sense of loss or a feeling like

you're losing things in the

process, sometimes yourself,

sometimes other things, but you

know, things that come to mind,

sleep, losing patience, losing

friendships.

Effects at work where you feel

lost at work or you're losing your

connection with work or even

yourself.

Like what, what do you think are

the first thing, the first signs

of those losses when you, you

enter that robotic phase?

I think it's going to be, again, I

can only speak to my, and this is

true for all of this.

This is just my lived experience,

right?

In my, in my journey, what I've

learned from, had the, uh, learned

from my clients too, but, um, I

think it's cumulative and also

kind of like,

attention, attention, attention,

concentration, the ability to

focus on something when you are

constantly divided attention all

the time.

You know, you're at work, but

you're, in my experience, um, at

one period for years,

phoning my mom to wake her up or

else she would sleep for hours and

hours.

Setting an alarm on my phone to do

that between clients and then

having to set another alarm to

make sure that I call back to make

sure it happened.

And then going over there at lunch

and then coming back and seeing

the client.

So you're split all the time.

So concentration, concentration

and, um, chronically being behind

because crisis things come first,

right?

So you're chronic, being

chronically behind in many, many

parts of your life.

Yeah.

And, um, it's interesting.

I mean, it's, it's almost proof in

principle of that, you know,

what was thought to be a time

honored skill of multitasking, but

I think that's now been refuted,

but I think in your words, you

pretty much hit the nail on the

head that, um, that the process

just diffuses you.

It's attention switching.

It really diffuses you.

It diffuses your attention.

And as you say, you just fall

behind.

What about friendships and, uh,

patience?

Does, does all of that just sort

of take, take a shelf as well?

Because there's no room for that

either.

I think that, um, patience is a,

uh, I've thought a lot about

patience in the last 10 years.

I've thought to myself, why

literally could someone explain to

me, why is it so hard to hear

somebody say the same thing 27

times in five minutes?

Like, why is that difficult?

Couldn't, like, why can I not just

let that, why can that not just be

okay?

Because if it could just be okay,

my journey would be a lot easier.

Right?

Why is that so hard?

Why is repetition being asked the

same question?

I don't know.

Like, it's an interesting

question.

Why is that so difficult?

It is.

Why do you think?

And, uh, I haven't got, I haven't

got any, any, uh, any really good

theories.

I just know that it's true.

That it, that it, that it is

wearing and hard.

And you have to, you learn how to

be, like, Alzheimer's is learning

how to be with someone that you

love and be okay with it and be

good with them.

And you learn all these kinds of

ways of, of spending time with

them and doing things with them.

But they take energy.

And that's something that the

more, the, the longer you go, you,

your creativity gets, like,

there's a lot of creativity

required in caring for someone

with Alzheimer's in my experience.

Creative problem solving, creative

ways of being together, creative

ways of, of finding, um, how to

make their life good.

Like, help them create the life

they want.

Creativity goes away as fatigue

sets in.

And you just don't, like, there's

a, there's a, it's just, that part

gets really hard.

Exhaustion.

Mm-hmm.

Complacence.

Really.

It's not complacence.

It's just, it's just deep,

bone-weary fatigue.

And it, the more, and it, it's

additive and cumulative over time.

Because, you know, what I used to

say is, like, you know, as my

mom's needs increase, my, I'm not

fresh.

Like, I like the furthest thing

from fresh.

Right on.

My, it's the, it's the opposite.

Like, it's like an inverse

relationship, right?

Her needs increase and are, my

showing up over time impacts me

more and more.

So, how do you create, sort of,

I'm trying to figure out where

that leads to a tipping point or

if you're already, like, if the

tipping point is actually a

drawn-out process.

But, how do you...

I think that's it.

I think it's, like, you go down

and you go up and you go down and

you go up.

Like, I think it's, like, but I

think it's all...

And the sine wave may get a little

bit bigger or the trough's a bit

deeper or maybe the peak's a

little bit less high, right?

That's what I was going to say.

Or the angle is, yeah.

Like, I, that's what I feel like.

Because I can think back and think

of certain tipping points in the

last 10 years where, usually for

me, they're just, like, hitting,

hitting an emotional wall of,

like, I can't do this in this way

anymore.

But I still have to do it.

So, I got to figure out how to do

it.

Like, there's no getting off the

ride, right?

How do you process your thoughts

about the future in those moments,

then?

No, it's not great.

Like, like I said, it's, it's

truly not, it's just not a place

where I have to pull myself back

from the edge.

Like, the long-term future is, is

really hard.

I wonder if it's that sort of

people that's saying the future is

now, and maybe that's an important

anchoring point, is that staying

in the now, in those troubled

times, allows you to just sort of

unload too much worrying about the

future and trying to stay now.

Although, as you said, in your

progressively depleted state, it

remains a challenge.

Yeah, and I think one of the

things I did was, I 100% said this

to myself, was, I said, these are

the good days, okay?

Like, for years and years and

years, I would say, these are the

good days.

Because, despite all of it, there

were, there were things that I

could, I could count them.

I could say, my mom can still do

this.

My mom can still do this.

Like, this is still, these are

ways of reminding myself.

Because there's like that

anticipatory grief, too, right?

Like, that is woven into all of

this as well.

And you don't want to spend a lot

of time there, either.

I mean, when I say that,

acknowledge it, allow it, but to

not let it color everything.

Well, and letting yourself enjoy

those good days, and that's almost

a bit of an act of self-compassion

as well, towards yourself in that

journey, as opposed to, you know,

thinking yourself into a different

corner.

Did, at one point in all of this,

did that work ever become pure

suffering?

Or was there always sort of a

beacon of light that you were able

to carry?

There have been stretches where I

would say, I could feel in every

fiber of my being, and I didn't

want to do this.

Like, I just, like, every part,

you know, you have to do X or go,

or be there, or do this, or do

that.

And, like, every fiber of my being

did not want to.

How did that show up?

Was it, like, one day where you

just, it just, there it was?

Or did you notice, like, you went,

you say, every fiber.

Or was there certain fibers first,

and then just everything just hit

that pinnacle?

Or is it actually just, like,

almost like an on-off switch,

where you're just going and going,

and suddenly you get that wall

that hits you?

I think that there were, I think

that there's kind of, there is a

kind of a lead-up to it, that I

can kind of work my way around.

And then there's, and then it is

more like a, partly when I don't

have a choice.

If you don't have a choice,

there's, and sometimes there have

been no choices, right?

No backup, no options, no, no

other thing.

So there's no, there's, I have to

just, you just have to do it.

Like, it's so funny to say that

out loud, but it's, it's just,

there's a trick to that.

But then I think sometimes it was,

like, the wall of, like, and

literally I can feel it in my, I

can feel it in my stomach.

I can feel it in my, it's a

physical sensation of, like, I

don't want to dread.

I can't, I just, like, I don't

have it in me to, to do this

thing.

Luckily for me, it's not a place I

stay.

It's not a place I've had, I've

stayed.

It's a place I've been.

It's a place sometimes I get to.

But for me, I'm able to, I've

found, I have had ways of pulling

myself out.

That's huge, though, because

you're making a decision in that

moment.

The decision not to stay in that

space.

What, what fuels that decision?

What informs the skills to be able

to make that decision?

Like, realizing I'm here, I'm

hitting the wall hard, but I'm

choosing not to stay here.

I'm sure there's some listeners

out there who just love to just

get a sense, okay, I'd really like

to do that.

How do we do that?

Well, I think, I think the first

part is, when I think about

self-compassion, I think about,

the first part is the

acknowledging of the suffering,

right?

Like, being able to literally,

like, being able to literally hold

yourself and say, this is just so

painful, and this is profoundly

hard right now, and I'm feeling

it, like, in this moment.

Like, to really, really hold

yourself and acknowledge it,

because that's the first, like,

that's, that has to happen to be

able to move away from it.

Like, you have to really own it,

and so sometimes just to literally

hand on heart, hand on belly, and

acknowledge the suffering, like,

in the moment.

And there are other, when I think

about that, there are other

profoundly painful moments,

different than that, in when

you're caring for someone,

caregiving.

Like, there's just these moments

of, like, profound pain that you

have to recognize them and honor

them.

They just are.

What if, what if that, what if

this doesn't quite get you out of

the gate?

What are the next, what are the

next skills that you need to tap

into, when, when the stakes are

higher?

Yep, yep.

Okay, you gotta be able to hold

two stories at the same time.

And I think, you know, you have to

be able to hold, because there are

always two stories.

I could tell you the story of my,

of my caregiving, but I could also

tell you the story of the other

parts of my life where, and I have

other parts of my life.

That are generative, and

life-giving, and good.

And you have to be able to hold

two things at the same time.

And it's actually kind of crazy

making, right?

How can some, how can something in

your life be so all-consuming, so

painful, so, so hard?

And, you know, my kids are healthy

and thriving, and doing the things

they're supposed to be doing.

And that gives me tremendous

pleasure to watch that kind of

hope in life, okay?

I'm learning.

I've got, like, it's looking for,

you know, I don't know if you know

anything about polyvagal theory,

but glimmers.

The concept of glimmers.

The idea of looking for, glimmers

are the opposite of triggers.

So, gratitude, cultivating,

gratitude is actually, and

actually some of my, my mother's

extremely grateful.

So, maybe there's, like, a genetic

predisposition to gratitude.

Because my, and she is still

grateful, okay?

And appreciative.

She's, that's kind of her, she's

very unusual in some ways.

But, in that regard, I think the

gratitude, and it doesn't have to

be big.

In fact, the research on gratitude

shows us that it's the searching

for things to be grateful for,

that's actually where we get the

kick.

It's not in the what it is.

It's the act of looking for the

things.

And so, so I think, I think

gratitude is part of it.

Gratitude and appreciation, having

other parts to your life.

But you have to notice those

things, right?

And you have to be able to hold

two things at the same time.

The pain, and the, and the joy,

and the weird mix that life is.

That's hard.

That's actually really hard for

people.

That there, that there can be,

that the story is never just one

story.

Are there approaches to build

those skills in, in handling both

stories?

Like, is this part of therapy?

To build those, those, those,

that, those resources internally

to be able to carry two stories?

And with, with a dab of gratitude

and ability to be present in the

moment.

And hopefully that gratitude fuels

an ability to enjoy the moment.

Like, can that be learned?

Because I'm sure people are dying.

Like, these are really

foundational things.

If you can, if you can create a

galvanized ability, to use a term

that we're using today, to keep

two stories, your caregiving

journey, as well as those parts of

you that fuel you, not just as a

caregiver, but fuel you as the

person you always have been.

There's something to be learned

there.

Yeah.

I think, I think those things can

be learned.

Just like, just like we can,

understanding who you are as a

caregiver and what informs your

caregiving and how you perceive

it.

You know, I, I could say I'm, I

have struggled with this.

Like, I'm, sometimes I'm a person

who can get pretty stuck in the

way I think something should be.

And I have pretty high standards.

Ask my partner for everything, you

know, like, you have to learn how

to dial it back, right?

I remember a really wise colleague

saying to me at one point, maybe

you could take, and this is

actually hard to even say out loud

because it feels like a bit of a,

like, maybe it's a betrayal or

something.

But she said to me, could you take

just a little bit less good care

of your mom and a little bit

better care of yourself?

Just a little.

What would that, like, what would

that look like?

Loosening, right?

That's a loosening question.

Can I loosen how attached I am to

the way things need to be for my

mom in order to see that I'm a

person in the story?

And I think it took me some time.

It took me some time in my journey

to, it's an ongoing journey.

It's not done.

Like it's a, this is not

something, it's not a place you

arrive at and suddenly you do this

perfectly at all.

You fall into the pits.

I remember.

But the getting out process.

The getting out process is what

you and I are talking about.

How do you, how do you fall in and

get out?

Yeah, I think our talk with

Jeanette Yates a while back, she

said, just show yourself a little

grace in the process.

And that really resonated from

that conversation.

I could see where that has its

place in, in this as well.

You know, you have an interesting

perspective as a therapist as well

as an entrenched caregiver, but do

you think the suffering that comes

with caregiving is different

compared to other forms of chronic

stress or trauma that, you know,

your clients might even come to

you to talk about?

Like, is this a category on its

own?

All I, when I, yeah, that's a

really, that's such a good

question because people's lives

are very rarely about singular

things, right?

Like a person doesn't come in with

caregiving stress separate from

other sources, other chronic

stresses in their life and their

trauma history.

They're always all these things

all mixed up together.

Correct.

So, what I think is interesting is

how one informs the other.

You know what, you know what I

think the difference, and this is

just me, just me, when I think

about chronic, chronic unremitting

stress.

Want to hear what you have to say?

Mm-hmm.

Well, it's sort of a simple

answer, but, like, caregiving

stress, the piece there is love

for me, right?

And that actually makes me feel a

lot when I say that, because

everything from my mom, dignity,

quality of life, it's coming from

a place of love.

The chronic stress that you

experience from work and other

sources, it's just different, but

that makes the, for me, makes the

caregiving journey different,

makes it harder in some ways, too.

It's harder to, harder to, harder

to figure out how come what

sometimes it feels like what's, to

care for myself means my, my

mother suffering.

And I actually, that's an

interesting, but yeah, like, if I,

some of the choices that I may

have, that I have to, may have to

make in the future, or, um, they

involve what might be better for

me, but is not better for her.

And I find that part really hard.

How do I, how do I, how do I

balance those things?

I think that's different.

So, but to your point about

chronic stress in other areas, I

think the physiological effects

are very similar between chronic

stress and caregiving stress.

Like, it looks really similar in

terms of how it shows up, how

people live it.

Cortisol up.

Exactly.

Like, chronically hyperaroused

nervous system or flat, depending

on their proclivities in that way,

right?

Uh-huh.

Um, sleep disturbances, all the,

all the typical, like, that looks

the same.

And then there's so many flavors

to, to people's caregiving

journeys.

Like, it's really hard.

That's why it's so important to

realize this is just me.

Uh-huh.

It's just me, my, my experience.

And I've sat with so many people

that have, like, I just know how,

I know how hard, how hard this can

be.

And I have, yeah.

Yeah.

So, the trauma piece, as I said,

is a super interesting because it

is, it plays a huge part in how

people move through this part of

the journey.

And that some of the work that I

do with clients, right, is just

trying to disentangle, people get

into haves and shoulds.

And I recognize this, right?

I see myself in that.

It has to be a certain way.

It should be this.

Um, I don't have a choice.

When people start feeling like

they don't have choices, that's

when we want to pause and kind of

take a step back and look at it

and think, there is a truth to

some of that sometimes.

Okay, there are 100% is a truth.

And, this is the and story, right?

And there can also be places where

we can play with that a little

bit.

And how, and I think, I think

about pulling back energy into

people.

You're giving out energy.

What are ways that we can

disentangle?

What things are, you know, the

prioritization is a big deal.

Everything starts to feel like a

crisis when you're in that mode of

do, do, do, do, do, solve, solve,

solve, solve, solve, fix, fix,

fix, fix, fix, fix, fix, fix

problems all the time.

It starts to feel like you're

always in crisis mode.

And, and the space to step back

from that and figure out, are you,

is this, is this truly a crisis?

What is a crisis?

Now, having said that, there are a

lot of things when you're caring

for someone with Alzheimer's that

they don't look like a crisis from

the outside.

Like something as simple as, um,

Rogers replaces my mother's phone

with a phone she has never seen

before, a TV switcher.

I thought that was going to be the

thing that would push my mom into

long-term care because she

couldn't identify the object.

She couldn't.

So I spent like two days trying to

figure out how I was going to

support my mom because she has to

be able to use a phone, right?

For safety.

Like if she can't make a phone

call, we are in some trouble,

right?

And it took days of time to figure

out how to, how many instructions

could I write and where could I

put them and how could I, like,

it's not a crisis, but that was a

crisis.

And reinforcement and repetition

and yes, of course.

And there is no laying down of new

memories, right?

There is no laying down of new

memories at a certain stage in

Alzheimer's.

So you're trying to, like, it's,

it's a whole, I could, memory

would be another conversation to,

uh, it's really interesting.

But at any rate, that's an example

of it sounds really stupid, right?

How could a phone be a crisis?

Well, you know, we talked, we, you

mentioned how chronic stress,

trauma, and caregiving suffering

are kind of all intertwined

because everything gets brought.

at the table, but do you think the

suffering that comes with intense

caregiving is a kind of suffering

that only another caregiver can

understand?

I, yes and no.

I think that I have a few people

in my life, a small number of

people who truly get it.

And they have told me how what

they do has been altered by

watching this experience with me,

what they've learned from that.

But that's like a person who's,

there are people in my life that

are deeply in my life.

Yes.

I think that it is something, it

is very lonely.

It's a very lonely process,

caregiving.

Very lonely.

So, yes, I think, I think only

people who have, I think people

who have been through it have a,

have a different ability to

connect and understand.

And again, I think it's specific,

like, the journey with Alzheimer's

versus, you know, caring for a

child with a disability into

adulthood.

That's a different experience.

Absolutely.

You know, your position related to

the person, your, all of those

things will.

The baseline relationship, for

sure.

Yeah, we, you know, it just keeps

resonating that we're seeing, and

to use North American society as

an example, but we see it, I think

it's happening across the world.

Caregiving is up there with death

and taxes.

If we're not going to be cared

for, we will be caregivers in some

capacity or not.

But do you think society needs to

relook at approaches to actually

training the next generation of

family caregivers and that, you

know, I always allude to this, and

I'm always curious to know what

people think, but we do, you know,

many people do a marriage prep

course.

But maybe there's a caregiving

prep course that needs to, we need

to be aware of certain thoughts

and certain conversations we need

to have at a certain point in

life.

Maybe, and maybe it'll be five or

10 years before we have a chance

of being a caregiver, but

something that allows us to be

ready for it.

Or maybe to sort of take an

inventory of things that linger,

which if we healed from would make

us better prepared for the next

phases of our life.

And I'm always curious to know

what experts in the field like

yourself think about that.

I got, I went off in a little

mental tangent about something

when you were talking.

So I'll come back to answering

your question, I think, but I, but

what I was thinking about was how

incredibly invisible caregiving

is.

And that's something that I've,

that I've struggled with.

That's well described.

The invisibility of caregiving.

Oh, it's invisible.

And there's so much, there's so

much silent suffering.

Well, it's invisibility in the

face of quiet expectations by the

system.

And that you continue to do all of

the function and all the parts of

your life with no, there's, well,

there isn't really any

recognition, right?

There is no recognition for it or

acknowledgement or there's a high

cost, but no recognition.

And, yeah, like I look at, I talk

about middle-aged women because I,

I mean, there are, I just look at

middle-aged women and I look at

the load that they're carrying,

right?

And I assume that I have some

understanding of all of the things

that are, that are going on there.

I don't know.

Yeah.

The silent suffering strikes me,

the invisibility of it, the lack

of recognition, the fact that I,

like I said this to a colleague of

mine a few times.

The support system that my mom has

has saved the healthcare system

enormous amounts of money by

preventing her from being a

frequent flyer through the

hospital system, right?

The prevention of the oversight,

the, all of that, like the amount

of resources that have been saved

by the work, by, by the work and

figuring out what that work is.

There are so many things I didn't

see coming in this mark, in this

process.

And like, I would say I'm a

forthright, like I'm a forethought

person, but there's so many things

I didn't see coming in terms of

what this would mean and look

like.

Well, there's a big call out and

we're starting to see it emerge

that this invisibility and the

indirect costs that are saved by,

or the direct costs, the direct

costs that are saved by the

conveniently placed indirect

caregiving, if you will, because

it's kind of invisible, as you

say.

It's not on the books, at least

not, not the systems books.

It's on your own personal books,

but it's not on the systems books.

That, that needs to be recognized.

And, you know, we are seeing in

different states across the U.S.

where tax credits or some sort of

stipends for caregivers or family

caregivers are coming to the

forefront,

where the family caregiving leave

is now entering the workplace as a

discussion point for, you know,

strategies for retention of

workers by acknowledging the

social realities that we're all

facing in our society.

How many people, how many people,

how many people leave the, leave

the workforce at the peak of their

career?

Or, you know, don't contribute to

the retirement funds because

they're pocketing the extra costs

of, of caregiving for their loved

one.

And, you know, there's an actual

loss of productivity or less hours

on the clock than usual at work.

So there's, there's a lot going on

here.

And, you know, I think it'll be a

very interesting five to 10 years

to come and, you know, to see

where this goes,

because with what you describe and

if, you know, collectively that's

being described and that becomes a

voice and a loud voice, hopefully

heard.

You know, as a therapist, you

know, you became a caregiver over

this period and, you know, you've

continued to work in the field.

You've continued to learn over

your career trajectory.

Has your training as a

psychotherapist and your

experience as a psychotherapist in

any way protected you from the

darkest parts of the caregiving

journey when you look back?

Maybe.

I mean, I, I think that I, I think

I do it differently because, you

know, being, I feel like for me,

being a therapist isn't just what

you do.

It's who you are, right?

Like it's a, it's, it's, and you

use yourself in your work.

And I think that because of that,

you can see, sometimes you're able

to see yourself, hold yourself

separate to, like, I think about

all the skills and learning about

being with yourself and managing

difficulty and change and

transition and all the things that

I've spent 30 years talking to

clients about.

And it's all here.

It's interesting.

It's interesting.

It's interesting.

It's interesting.

It's interesting.

I, now to be taking my experience

of this and, and translating it

into my work with clients.

It was interesting.

Yeah.

You know, we didn't talk about

COVID, but COVID was, uh, COVID

was really something.

COVID was overnight, no supports

and resources for people.

And so from having, to being the

only support in my case, I mean,

me and my sibling, the only

support for my mother, no other

things, no other resources, no

other, you know, everybody's

working from, everybody's at home.

My kids are home, my job, your

job's turned upside down

overnight, like in terms of the

method, the method and how we're

doing it and mental health stuff

was like, you know, and then on

top of that, trying to, to manage

COVID was really something in

that, in that process.

That must have been, that must

have just been something

exponential, like almost

undescribable once, as you say,

once you have a working mechanism

in place to sort of keep all the

balls in the air, then all of a

sudden, overnight, everything

comes crashing in.

Overnight.

But I think that's the journey

with Alzheimer's is you go along

and you have maybe like a little

time where things are kind of

semi-stable and then something

changes and then something

changes.

Like it's this, it's a, it's a,

it's a shifting, shifting sands,

kind of moving.

Um, so how do you prepare for

that?

How do you prepare people to be

caregivers?

Can you prepare people?

Uh, everyone, you know, you say

everyone's going to have a shot at

it, but the truth is that that's

not true.

Like think about all the families,

you know, where people, some

people decide that that's not

their job.

Not everyone shows up to care.

You're right.

Like at all.

And, you know, and again, people's

family dynamics and, you know,

and all of that play into, play

into that as well.

I have a little list of things

that I mentally think these are

things that I will do in order to

be, in order to prepare myself for

being, for like things, I don't

want to call it things I won't do

to my kids, but let's call it

that.

You know, like a list of this is

smart.

At this, by this age, I will

decide this.

I will make these decisions.

I will write them down.

I will tell them.

I will have a candid conversation.

Well, I remember my parents being

caregivers for four senior

relatives, my dad mostly.

And one of them outlived him.

And I always remember sort of

saying as a young person in my

20s, you better not do that to me

one day.

Like just remember what you're

learning and I sympathize with

you.

But if you do that to me, that's

going to be a no-go.

But, you know, it does bring

about, you know, when we're facing

these challenges and these dark

moments,

like there are dark thoughts that

are triggered among caregivers and

they may have to bury them and

just hide them away because

there's so much guilt and shame.

When you look back over the

stories, and this is all about

storytelling, what do you think

those darkest thoughts that people

are compelled to just hide and

keep buried?

Well, one thing is, I don't know

how dark this is, but I think that

a lot of caregivers have escape

fantasies.

And it's just a tell, right?

It's a tell about needs, that

what's happening is so intolerable

that it feels like you need to get

out of it, that you need to get

away.

And you're desperate to get away.

And I think there are a lot of

people in caregiving roles who

feel that desperation to just

have.

I know the difference between

being in my life here and then

when I'm fortunate enough to be

able to do something, like go to a

conference or something.

And the amount of energy is so

interesting.

Like the connection to energy and

the being able to shed for a

little while a role that you play

that is so, like, and you often

don't realize what it's costing

you until you get away from it.

Some people never get to get away.

But you realize it's not

cognitive, it's like a physical

feeling of what it's like to have

a true break, like to have some

distance where you're far enough

away that you can't, someone else

has got to solve the problem or

deal with the crisis or whatever.

It's huge.

But it is, it is huge.

And that's when you can realize, I

think sometimes people describe

feeling kind of, feeling kind of

dead inside.

Or they feel kind of, I mean, I

think lots of people think about

the end, right?

Like, this will end when the

person's gone.

And for some people that feels,

you know, like, I don't wish them

gone, but I wish the end to this

suffering.

And, you know, it's very complex.

I've heard some caregivers say

that that weekend away is followed

by soon-to-evolved dread of coming

back.

Oh, the not wanting to come back?

I didn't hear that in you, though.

You sort of sounded like this was

quite rejuvenating.

Is there dread, too, in the

return?

I have 100% had ambivalence about

coming home.

Yeah, for sure.

But not because of, but to say

that is, again, is to hold a

couple of truths here.

Only about one aspect of my life.

Not about the, all the other parts

of my life that are, that are good

and generative.

So, so you have to hold those at

the same time.

You can imagine the compounding

effects when you don't have those

other parts of your life that

generate positive energy.

And yet, those individuals are

called and often have no choice at

being caregivers either.

And they're among the many who are

also trying to work and also

trying to carry on a household and

a budget and everything else.

You know, you said.

Yes, like, no support.

Like, without, that's why I was,

the very beginning, you asked

about capacity, right?

Like, where do you, where do you

find support?

Where do you feel understood?

You know, where, who are the

people that get what you're going

through?

Do you have fun in your life?

Do you have something?

I've realized this is actually a

really, actually as a strategy,

something I've realized is so, so

important.

Okay, do you have something that

you do in your life that takes up

all of your mental space?

It could be playing a sport.

It could be playing board games.

It could be, but it takes up all

of your mental space because the

relief, sometimes from caregiving,

is when the thoughts stop.

When you're not flipping from

thing to thing to thing and

problem solving and all that, and

you focus, right?

It's like a mindfulness activity

in a sense.

Anything where, where our

attention becomes like focal and

we, and we notice when our

attention wanders and we bring it

back, that's some mindfulness.

That's the basis of meditation,

right?

Exactly.

So that can be, it can be a sport

because as soon as you're doing it

and you get out of it, you

recognize it, you come back to it.

But that experience of, of

focusing in, and that is, that is

actually extremely important for

truly having a break when you

actually are not literally

somewhere else.

So for some people, it could be

art.

Anything that takes up space where

you cannot think or when you

learn, when your mind wanders and

you bring it back.

That's extremely important.

Hugely valuable skill and one that

you need to practice, but I think

with the right motivation and

belief in, in the return on the

investment, you can develop.

And, you know, certainly it could

be important, an important part of

that toolkit.

You know, something you mentioned

earlier really struck me when you

spoke about love.

And as a caregiver, how do you

square love with feelings of

anger, resentment, and maybe even

disgust during their caregiver

journey?

It's, it's a delicate balancing

act or a delicate conflict, but

it's one that's potentially real.

How have you coped with it?

And what would you advise other

caregivers experiencing that?

That it's normal, right?

That the full range of humor and

feelings in a complicated

relationship like that, that it's

all, that it's super normal.

That there's nothing, that it

doesn't, it doesn't actually,

feelings are feelings, right?

They come and they go.

They don't actually, they don't

actually, and thoughts, right?

They don't represent reality.

They represent a moment.

And, like all of them, they're

going to come and go, how you feel

in the morning isn't how you feel

at night.

And it's normal that under a set

of enduring, impossible

conditions, that it makes sense.

And, and, that while you, that you

can feel both things, that you can

have both parts.

You can both resent someone and

love them.

You can resent someone and have

compassion.

You can, they can all be there.

Sometimes one is closer to the

surface, but they're all, they're

all part of the experience.

And, and, yeah.

What's it like when, you know, you

enter that stage where caregiving

just sounds so grossly unfair?

Like you're, you, you're losing

your prime years, yet the person

who you're looking after got a

chance to have their prime years.

And now they no longer even

remember who you are.

No, my mom still remembers who I

am.

So you'll have to ask me when I

get there about that part.

But the, I guess, I guess we can.

I think I've realized, I think

I've realized that part of the

problem with this is expectations.

Right?

Expectations and acceptance.

And I don't think that's a place

you arrive at.

I think that's a journey.

And it's something that I think I

struggle with in different, in

this experience, which is part of

the problem is believing that you

get certain things in a certain

way in your life.

That being 50 means, or 55 means,

that life should look like this.

Okay?

And the truth is, I can, I can

actually look around and find,

there are other examples.

I'm not the only person doing

this.

Sometimes it feels like that.

Right?

Because I've told you it feels

really lonely and poorly

understood and invisible.

And that's it.

That's really hard.

But if I step back from it, I know

that there are other people having

this experience.

I know that I'm not alone.

But I have to, I can, you know,

the suffering comes from the

non-acceptance.

And like I said, I'm not, I'm not

a, this isn't something, I think

this is something you try, I try

to do, right?

Which is kind of, we talked about

this at the beginning.

It's about acceptance and about

looking for the ways that I can

find ways to have the pieces that

I want in some way in my life.

So that I don't have to sit in

that place of, of I'm losing my

life.

You know, my, my dad passed away

in my 20s from a neuro, from ALS.

And that was a very important

moment about living your life, not

waiting to do everything.

Okay, like not waiting until

you're, not assuming that you're

going to have your partner when

you're 70 or have your partner or

have, like to have experiences

sooner and to try to, to try to

not wait for everything.

And I think that experience really

changed how I, how I felt about

trying to create what you need in

the now, as much as you can,

little pieces here and there.

And then recognizing them, right?

Like acknowledging them.

And maybe celebrating them and

giving, giving yourself a pat on

the back that you were actually

able to use that lens, right?

Because I think if there's no one

else around to reinforce, at least

you can, you can reinforce

yourself and give yourself a

little bit of directed

encouragement.

But, you know, a couple of times

now at the loneliness and the

sense of being alone on the

journey as your identity changes

has come up.

What have been the sources of

community for you?

Are there organizations that

you've become involved in or that

have benefited from you or you've

benefited from?

A lot of people say that, you

know, just the advent of really

valuable social media resources of

individuals with shared

experiences who just nurture each

other collectively are becoming

important tools for dementia

caregivers to tap into so that

they're in a world that some

people argue is a little bit

leaning towards toxic

individualism.

We can still find community in our

shared journey.

Yeah, and I definitely think that

there are times when, like, TikTok

puts things into words for people,

reaches people.

You know, it's interesting, right?

It does reach people's experience.

For me, my community of support,

my relationships, I haven't, I

haven't, like, for example, been

in a caregiver support group or

anything like that.

I, honestly, part of it is time

and space.

Like, I just, to do something

additional in that regard hasn't

been part of my experience.

My support has come from the

people, my close people in my

life, you know, whether those are

my, like, work colleagues, dear

friends.

That's where it's been, you know,

and some surprising places,

actually, in my church community.

Not surprising, but I often find,

like, I had a really dear friend

there who he was caring for his

wife, and he and I always had a

good connection.

He's a good, oh, gosh, he passed

away last year.

He was 80-something.

But we used to talk about things

together.

He understood, you know?

Like, so you find support in kind

of funny, in different places.

I just tried to learn everything I

could and rely on the people that

are my close circle, really.

Well, that common language and

shared experience, the lived

experience, is truly valuable.

You also kind of don't want to be

a downer.

It's a really interesting thing

about how you hold this out in the

world.

Like, how do you, when something

is this enormous thing that you

are carrying around all the time

and it's running your life, how do

you hold that?

In, like, you know, in regular

spaces, like, at work, or someone

says, how are you doing, or

whatever.

Like, you know, you're kind of

always, you got to think, but how

do you, where does that sit with

you?

And I think that's something I've

struggled with, too.

Like, how do you, because I think,

why, and the answer for me is you

think about what you,

what you are hoping for back when

you share.

And that's something, actually, I

talk about with clients, is about

sharing, sharing with, right now,

when you're vulnerable and you're

exhausted and you're in this

space,

you don't want to give something

to somebody who's not going to

hold it gently.

So sometimes, keeping it not

saying can be an act of self-care.

And then we have to think about,

who are the people that can hear

you?

Who are the people that can, can

actually, are going to give you

back something that you need and

can be part of your journey?

Who can you let in?

Who makes sense to you?

But that can be a whole process of

itself, right?

Of trying to figure out who and

where.

Because when you're exhausted and

somebody doesn't get it, that

sucks.

And you feel that reflection back

on you, and it's an uncomfortable

spot, short of falling to the

default and saying I'm fine all

the time, which can be a source of

problems also.

You know, we're very cognizant of

moral injury these days in the

healthcare domains, in a lot of

aspects of society.

As a caregiver for your mom, have

you faced decisions where you

ultimately had to make a decision

which you wish you didn't have to,

but it's all you could accomplish?

And was there some moral injury

that you've ever experienced in

having to make decisions like

that?

I think, I think I'm still, I

think I'm still working on that

one, actually, in some parts of

that.

But what I will say is that

possibly among the really most

difficult parts of this journey

are looking at what is out there

in terms of support systems, and

it is not acceptable.

The quality of the care, it's not

acceptable.

What is there?

The whole value system, right?

It's ironic that the people we

count on the most are very

undervalued in terms of their

salary scale, and their

remuneration, and that the help

that society needs.

Good caregiving, good caregiving,

professional or non-professional

is very important and special

work, and it takes a true

dedication of self and compassion

to the person you're caring for,

even if you're actually on payroll

for that.

Yeah.

And the medical system is not yet

dementia-friendly.

It's not dementia-educated.

That's my experience is in so many

different settings.

I always joke I could have a

secondary job telling other people

how to do their jobs.

How do you fix that?

Training people to how to, like,

for example, I will not talk about

my mother in front of my mother.

You don't do it.

It's not okay.

If you need to have a conversation

with me separately, let's have a

conversation separately, but we

won't talk about my mother.

Who is aware?

Mm-hmm.

It's not respectful.

Also, if you know someone's had

dementia for 10 years, you don't

assume that they're a reliable

narrator, because that's a waste

of time, too.

Mm-hmm.

So there's some theater in there

that is really frustrating.

There is some lack of awareness.

There's, I mean, the most

frustrating part is people

offering you medical solutions

that are wholly impossible to

enact.

That don't ask the question about,

does this person live alone?

Are you there with them 24 hours a

day?

Do they have?

Because how is this intervention

going to happen in this scenario?

And there is, like, there is very

little.

There's never a question about,

like, I've been to many different

kinds of medical scenarios with my

mom, and nobody ever asks an

intelligent question about, how

are you going to, how is this

going to happen?

And, you know, if, like, you have

low blood pressure, every time you

stand up, I want you to squeeze

and tense your quads, okay?

That's going to help you to not

have the dizziness when you stand

up.

Bye.

How's that going to work?

Right?

Or, I'm going to put this entire

thing on to monitor your, to do,

like, a halter monitor thing, all

the things.

What is going to happen?

It is going to get torn off,

packed up, packed up in the little

bag and put on the thing.

It's not going to happen.

If it, if it needs to happen, then

you need to say, this is so

important that you need to be with

this person for 24 hours straight

while this is happening, with your

hand on there to keep them from

tinging it off, if it's that

important.

I wanted to give you an

opportunity before I say thank you

for your openness and your honesty

today and sharing your story with

us, but also sharing a very unique

experience and perspective.

If you had a choice of an

important call to action for

caregivers, but also for maybe

society at large, what would they

be?

Oh, gosh.

You can pick many if you'd like.

I know, I'm just thinking about, I

think I want anybody else.

I think, I think to, to other

caregivers, I think it's a, I just

wish, I wish gentleness and

support and finding, finding

people who understand you and to

not feel so alone in the journey.

Because that is, that is, that is

the thing that buffers, that is

probably the most important thing

to me that, that has buffered me

through my journey is having

people who get it around me and

having support.

And I wish that deeply and that

the full range of, of everything

you feel is normal.

Like it's just normal, like you're

a human being and under extreme,

enduring, well, suffering,

difficulty, and it's all normal,

like how you feel.

No need to add extra burden by

guilting, you know?

And yet it's hard, like I

understand that too, like I

understand that too, it's not

something, we're not perfect.

I don't know.

And then I'd like to, I would like

to dementia educate every single,

who could have saved me hours and

hours of time and frustration when

I think about the time I've put

in.

The time that I have, has been

sucked up by solving problems

created by solutions offered to me

by the medical system.

And people not working together

and making assumptions of like

just so little care in that

system.

Even, even within the, and more,

more money.

I want more money for caregivers,

pay them properly, pay them what

their work, their worth, their

work is worth.

Find a way to recognize the, in

the invisible work that's

happening by all the caregivers

doing all this silent work.

Find a way to recognize that.

I hear you loud and clear.

Susan, thanks so much for being

here today.

It was a pleasure speaking to you.

And again, thanks for putting it

all on the table.

You have so much to offer and so

much perspective.

Folks, that wraps up another

episode of the Caregivers Podcast.

I'm your host, Dr.

Mark.

We'll see you again next week.

And throw us a line, throw us a

comment.

We're interested to hear what you

have to say.

And if you want to hear more or

less about different topics, put

it in the comments, direct message

us.

We're responsive because this is

your podcast.

Thanks and we'll see you soon.

Before we wrap up, I wanted to

remind you of something important.

The conversations you hear on this

podcast are here to inform, to

support, to spark reflection.

We're not a substitute for

professional medical advice, care,

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Listening to this podcast does not

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If you're facing a medical

concern, health challenge, a

mental health challenge, or a

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I encourage you to reach out to a

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don't wait.

Call your local emergency number

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away.

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They don't necessarily reflect any

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It's not tied to any hospital,

university, or healthcare system.

Thank you for being here, for

listening, and most of all, for

taking the time to care for

yourself while you continue to

care for others.

I look forward to hearing from

you.