April 30, 2024 • 58 mins
This episode delves into the often challenging and transformative journey of caregiving, featuring Aaron Blight, founder of Caregiving Kinetics and an internationally renowned consultant on caregiving, aging, and healthcare. Aaron Blight, recognized as one of the top 100 healthcare leaders, shares his personal journey into caregiving following a sudden need to care for a loved one, highlighting the profound impact it had on his family's life and career. He walks us through the emotional and operational aspects of caregiving while offering us insights and perspectives along the way, including how role changes within the family affect us, offering strategies for dealing with other family members that “try to offer helpful suggestions” about how you could do it better, the importance of outside support and resources, and how to ask for them. With insights on how to better navigate caregiving roles and offer meaningful support to caregivers, this episode is a valuable resource for anyone who is or will be involved in caregiving roles. Which is…pretty much all of us at one point or another. Join us and let’s learn how to do it with more understanding and and even a little grace.
For his blog, speaking information, and follow up information: https://caregivingkinetics.com/
To check out Dr Blight’s book, click here: https://caregivingkinetics.com/get-the-book-when-caregiving-calls/
00:00 Introduction to Caregiving: A Personal and Professional Journey
04:19 Dr. Aaron Blight's Personal Story of Transformation Through Caregiving
09:41 Understanding Family Caregiver Identity Theory
15:34 Navigating Role Reversals and Emotional Challenges in Caregiving
20:15 Strategies for Managing Caregiver Stress and Role Conflict
29:59 Validating and Supporting Caregivers
31:42 The Power of Specific Help Offers
34:13 Navigating Family Dynamics in Caregiving
37:09 Involving the Care Receiver in Decision Making
42:31 Addressing Concerns as a Non-Primary Caregiver
45:45 The Ripple Effect of Love in Caregiving
52:44 Reflections and Takeaways on Caregiving
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hello and welcome to the WhatReally Makes a Difference
podcast.
I'm your host, Dr.
Becca Whittaker.
I've been a doctor of naturalhealth care for over 20 years
and a professional speaker onhealth and vitality, but
everything I thought I knewabout health was tested when my
own health hit a landslide and Ibecame a very sick patient.
(00:22):
I've learned that showing up forour own health and vitality is a
step by step journey that wetake for the rest of our lives.
And this podcast is aboutsharing some of the things that
really make a difference on thatjourney with you.
So grab your explorer's hatwhile we get ready to check out
today's topic.
My incredible guest network andI will be sharing some practical
(00:45):
tools, current science andancient wisdom that we all need,
no matter what stage we are atin our health and vitality.
I've already got my hat on andmy hand out, so let's dive in
and we can all start walkingeach other home.
(01:07):
Oh, the strap in, because todaywe are talking about something
you may not be thinking of yet,but you will be at at least one
point in your life.
I'm almost sure of it.
Today we have Dr.
Aaron blight with us, and he isthe founder of caregiving
kinetics.
He was named as one of the top100 health care leaders by the
international forum onadvancements in healthcare.
(01:29):
And he's an internationalspeaker and a consultant on
caregiving.
Aging and healthcare, why wouldI be so excited about this?
It's because I've heard Aaronspeak and he's a personal friend
of mine.
So we've had discussions aboutcaregiving and it is true.
What he says that most of us atone point in our life will
either be caregivers forchildren, family members, loved
(01:50):
ones or friends, or we will becaregiving for, and we will
experience.
The chaos that can be the rolereversals or changing of rules.
In that situation.
Aaron shares vulnerably aboutwhat happened in his personal
life.
That let him know.
There was a lot more tocaregiving than he thought there
was both personally andprofessionally, and he's made it
(02:13):
a life goal of his to walk otherpeople through the process so we
can all do it better.
He's worked on policy forcaregiving, with Medicare and
Medicaid.
He teaches groups.
He travels internationally toteach and to speak.
And he's just a really greatperson on top of that.
So without further ado, let'shear what Dr.
Aaron blight has to say in thisconversation.
Track 1 (02:36):
Uh, Erin, I am so grateful that you are here to
talk to us and, and help us makeour way through something that
we likely will all face in ourlives.
So thank you so much for comingon the show to help us
understand how we can have morehealth and vitality, even when
we're in situations we couldn'thave planned for like caregiving
for a loved one or receivingcare ourselves.
(02:58):
You are my favorite person totalk to about this.
So thank you so much for joiningin with us today.
squadcaster-f9ab_2_03-20- (03:04):
Thank you, Becca.
I'm really excited to be herewith you.
It's so good to see you.
Track 1 (03:09):
Remind me again what state you live in.
squadcaster-f9ab_2_03-20-20 (03:11):
I'm in Virginia.
Track 1 (03:12):
Virginia.
I knew it was somewhere pretty.
That's where I logged it.
So I met you when we were bothgoing through training to be a
professional speaker with
squadcaster-f9ab_2_03-20 (03:23):
That's right.
That's right.
Track 1 (03:25):
And, that was terrifying and wonderful and
exhilarating and anxietyproducing experience.
squadcaster-f9ab_2_03-20-202 (03:32):
It was.
And you were, and you werefantastic.
I remember.
You were a standout Becca.
Yeah.
Track 1 (03:38):
Thank you.
Thank you.
I really do love that.
I hope to get back to it at somepoint, but I remember yours.
That was how I was introduced toyour work because I had never
thought of the truth that mostof us will be called upon to
care give at some point, littlekids failing, failing health,
(04:01):
you know, in parents or friendsor spouses.
And when you began to speak, Ithought, wow, there's a whole
world out here that I hadn'teven thought about and that I
think most people don't thinkabout until they're tossed into
it.
And once you're tossed into it,you're just kind of swimming.
I mean, there's the anxietyabout the person that you're
(04:22):
caring for.
And I know a lot of people endup just taking care of that
person and, and sort of steppingtheir life back.
Yeah.
But I take care of a lot ofcaregivers, like when they get a
moment and they get to come inand they are thrashed human
beings.
squadcaster-f9ab_2_03-20- (04:41):
yeah.
Track 1 (04:42):
So as you were speaking, you know, names and
faces were coming into my mindof people that I wished I could
share your speech with.
So I'm grateful that you keptgetting training and that you
do.
Go to speak to groups so thatmore people can hear this
information because I think it'sso valuable, Aaron.
Thank you for what you do.
squadcaster-f9ab_2_03-20- (05:01):
Well, thank you, Becca, that that
means a lot to hear that fromyou.
And you're right.
Caregiving hits everyone at somepoint in time.
And I think in my case, it justhappened at a, at a relatively
young age, at a time that I justdid not expect it.
And it really transformed mylife.
It, it changed our family.
(05:22):
It, it ultimately changed thedirection of my career.
Track 1 (05:25):
Would you please tell me how you got into this?
What happened at a young age andhow did you decide to transmit
that into teaching other peopleabout caregiving?
squadcaster-f9ab_2_03-20- (05:37):
Yeah, you know, Becca, I never
envisioned myself as acaregiving expert or a
caregiving speaker when I wasyoung.
But really what happened is Iwas 29 years old and my mother
in law got an unexpected braintumor diagnosis.
And at the time I was actuallyworking in the federal centers
(06:00):
for Medicare and Medicaidservices.
I was in the Medicaid program.
I was working in the disabledand elderly health programs
group, writing national healthcare policy for elderly and
disabled people, but I didn'treally know anything about what
it meant to be elderly ordisabled.
I was 29 and.
Relatively healthy and we wereraising our young family and my
(06:23):
mother in law just out of theblue got a brain tumor diagnosis
and they gave her weeks to liveand they recommended immediate
brain surgery.
They said that if she survivedthe O.
R.
And if the surgery wassuccessful, she might live six
to nine months, best casescenario.
Track 1 (06:43):
wow.
squadcaster-f9ab_2_03-20-202 (06:44):
So the extent of our thinking here
was, mom needs help, we're goingto help her.
Period.
It was that simple.
And she needed a place to stayafter her brain surgery.
So she moved into our home torecover.
She survived the brain surgery.
The brain surgery was successfuland she went on to live five and
(07:05):
a half years after that originaldiagnosis.
So she was a miracle, but shewent through radiation,
chemotherapy, another brainsurgery, all while she lived in
our home.
And so we were thrust into thefamily caregiving role.
We were sandwich generationraising our young children and
also trying to care for mymother in law at the same time.
(07:27):
And it was very, Difficult.
Very, very difficult for us.
Somehow we made it through.
But to be honest, Becca, I was areally lousy family caregiver at
the time.
And I had no idea what I wasdoing.
I had no idea how profound thiswas going to affect us.
(07:48):
And ultimately the cancer hadgone into remission, but then,
but she was in cognitive declinefor the rest of her life.
And so she needed help withdaily tasks and things like
that.
And so we were always helpingher.
And after she passed away, thecancer actually returned and she
opted not to, not to have anymore treatments.
(08:10):
She just let the cancer take itscourse.
But after that because of thefamily caregiving experience, I
left Medicaid and opened a homecare company to help families
like mine.
We, we served thousands ofpeople over the, the years there
in the Northern ShenandoahValley of Virginia, the Eastern
Panhandle of West Virginia.
(08:31):
And then I went back to schooland got my doctoral degree and,
and studied caregiving as aphenomenon of social science.
And after selling my home carebusiness this is what I do
today.
I, I wrote a book on caregivingand I speak to groups all over
the world about caregiving.
so for me, it's very much a acause, a purpose.
(08:53):
A passion.
I know that family caregiversneed help and support and I know
what it's like to be flounderingand unsure what to do.
And so I'm just grateful that Ihave the chance to share these
things.
Track 1 (09:09):
Oh, You encapsulated that story so well.
And I think, you know, I don'tknow, many of us know what we
are getting into.
If we're going to care, givesomeone, it's usually for that
same reason.
We know one thing, someone welove needs help, or someone
doesn't have anyone else, or,you know, all the reasons that
(09:29):
we go into, it's not like wealready know what we're doing.
And we like, put on oursuperhero suit and are always
kind, always patient, alwayshave the right answer suit.
Right.
squadcaster-f9ab_2_03-20- (09:42):
Yeah.
Track 1 (09:43):
do that.
So, so thank you for yourvulnerability of, I did not know
what I was doing.
And just like so many thingsthat are hard, I think it
launches us into our life, likeour real life, the things we're
really here to do.
If we follow the signs, reallyfollow our impressions and our
things we want to learn and theholes that we see in the system
(10:05):
that we know need to be fixed.
And if it's to be, then I'mgoing to step forward to help it
out, kind of.
That's what I hear from thatstory.
And that's what I know a lot ofpeople experience.
So thank you for speaking tothat.
What are some of the main thingsthat you wish you would have
known going into that, that youmaybe did one way that you
(10:27):
thought was correct, that younow know with more education and
more experience could have beencausing more problems For her or
for you or for the family.
What are just some main thingsthat you Thought were good that
maybe aren't so good to do
squadcaster-f9ab_2_03-20- (10:47):
Well, one thing, Becca, that I, I
really, that really, reallystruck me that I learned and and
that I share I talk about thisin my book when caregiving calls
guidance as you care for aparent, spouse or aging relative
and I include this in some of myworkshops across the country.
(11:09):
And that's something calledFamily Caregiver Identity
Theory.
And it comes from a couple ofapplied gerontologists, Rhonda
Montgomery and Carl Koslowski,who are both retired now.
Actually, Carl Koslowski passedaway.
He had Parkinson's.
But he was at the University ofNebraska Omaha.
(11:31):
And Rhonda Montgomery was at theUniversity of Wisconsin
Milwaukee.
And they spent about 28 yearsstudying family caregivers.
Some 20, 000 family caregiverdyads, dyads meaning the two,
the caregiver and the carereceiver, were the subject of
their research.
(11:52):
And I was exposed to theirresearch in connection with my
doctoral dissertation.
And so when I was doing myliterature review, I learned, I
discovered their, their work andI was just kind of blown away by
it, Becca, I couldn't, it was sointuitive and it also explained
(12:14):
really why my wife and I hadsuch a hard time.
Being family caregivers, and ithas to do with the changing of
roles that occur over the courseof a family caregiving.
And so the way that I like tokind of talk about this is, you
(12:36):
know, before caregiving entersyour relationship, you have an
established historicrelationship with your loved
one.
And that could be.
You know, mother, daughter,mother, son, husband, wife,
grandchild, grandparent,whatever the case may be, your
role in your relationship withthat person has always been a
(13:00):
family role, right?
And let's just use the exampleof, let's say an adult daughter
who's caring for her agingmother, right?
That your role has always beendaughter and that that role of
daughter is, is loaded withmeaning and it shapes how you
interact with your mother andhow you respond to your mother
(13:21):
and how you think about yourmother and how she thinks about
you and the things that she saysto you.
And you know, even as adults,some of those childhood
patterns.
And scripts continue to, to playout, right?
Track 1 (13:37):
oh yeah,
squadcaster-f9ab_2_03-20-20 (13:38):
And if, if your mother as an, as an
older person develops a healthcondition and requires
assistance from you now you findyourself involved in, in tasks
that are different than what youdid before with her.
Track 1 (13:54):
yeah
squadcaster-f9ab_2_03-20 (13:55):
You're breaking away from that historic
pattern, that historicrelationship, and it's because
of a health condition, and thathealth condition just rudely
interrupts your historicrelationship.
You don't have any choice inthis, and your mom needs help,
and so as the tasks that youperform for your mother change,
(14:17):
the way that you interact withyour mother also changes.
And so the way that you thinkabout your mother changes, and
the way that she thinks aboutyou might change, and the way
that she speaks to you mightchange, and the things that you
do together will change.
And so there's this emerging,encroaching role of caregiver
that's entering into yourrelationship.
(14:38):
And over time, With sufficienttime and sufficient decline in
health of your loved one, thatrole of caregiver has the
potential to crowd out yourhistoric familial role.
And that can be incrediblydistressing and difficult for
people.
(14:59):
And it was for me.
And it was for my wife.
You know, when I was 29, early30s, I just wanted to be a son
in law.
I didn't want to be a caregiverfor my mother in law.
And my wife, she wanted to be adaughter.
She didn't want to be hermother's caregiver.
And yet that's what we weredoing because the circumstances
(15:20):
required it.
And honestly, Becca, I never,ever adjusted to that caregiver
role in that five and a halfyears.
I kind of resented it.
And, but at the same time.
I wanted to help her.
I love my mother in law, stilldo.
She's was a wonderful person.
She treated me like a son fromthe moment that she started,
(15:40):
that I started dating herdaughter.
so I wanted to help her.
I just resented the fact thatshe needed help.
Track 1 (15:48):
Yeah.
squadcaster-f9ab_2_03-20-20 (15:49):
And so I didn't understand.
Why I was having so many, Ihave, I was having this just
internal turmoil constantly overthe course of caregiving for
her.
But once I learned about familycaregiver identity theory which
views family caregiving as aseries of role based transitions
(16:11):
that are precipitated.
by the changing healthconditions of the care receiver.
Once I started learning aboutthat and seeing it and
visualizing it, I understoodthat was, that was really the
essence of my challenge.
And I share this with familycaregivers all over, and I think
it really resonates with them.
Track 1 (16:41):
okay, like this anger I feel or this helplessness I feel
or this time period that I feellike has been stolen from me is
normal and How, how I can movethrough that a little better is
to understand the dynamic ischanging and learn to become
present with the change and whatthat is.
You know, when I was, when I hadmy, the heavy metal poisoning,
(17:07):
the brain injury in my brain.
I remember I was trying tofigure out how to do insurance
reimbursements.
So we had like a health share.
So you pay everything in cashand then you have to get
diagnosis codes and other codesand send it back into the
company.
And then they eventuallyreimburse you if you do the
paperwork.
Right.
But my brain was not workingvery well at all.
(17:30):
Numbers were confusing.
I was having a hard timespeaking.
And I couldn't remember.
almost anything.
So I remember my husband was atwork and I, my mom came over to
see if she could help me out ingeneral with things.
What we didn't know was that mymother was in cognitive decline.
(17:50):
She was
squadcaster-f9ab_2_03-20-20 (17:51):
Oh, my goodness.
Track 1 (17:51):
really well.
We now know that she hasParkinson's, but instead of
having the shaking symptoms,which I knew to look for, she
was having dementia symptoms,but she lived by herself.
She's a very smart woman.
She was masking them reallywell.
But what happened is when wewere on, when I was on the phone
with insurance and I couldn'tspeak.
So I went to like signal herwith my eyes like, Oh, this is
(18:15):
when my mom will save me here.
Like she knows my email address.
She knows my phone number.
She can spell this out for them.
Cause it's going to take me 10minutes through the stutter to
say all that.
And she's got me.
And she looked at me in panic.
Okay.
And I remember thinking, what ishappening right now?
And I looked down at her notesthat she was trying to write
(18:37):
for, for the person we were onthe phone call with, for like
how we, how we submit thesethings.
And her writing was cramped andsideways.
She's always had very beautifulhandwriting.
She was a secretary.
She can write fast.
And I looked down and I thought,that is, that is not the writing
of my mother.
And this is not.
The way that she remembers, andthis is not how she speaks.
(19:00):
And she's looking at me withintense anxiety.
Like I've just caught her insomething.
Like she was looking back at melike a child.
And I felt that role reverse.
But that was really trickybecause neither of us could do
what needed to be done.
It was the blind leading theblind.
But when you talk about that, Iremember that moment.
(19:20):
And there's been, you know, manymoments since.
Now we understand more what'shappening, so we know how to
help her.
And it's been really clarifying.
But there's been a lot of timeswhere the roles have switched
and it was not something we werevery prepared for.
you know, how much care they doneed help with how far that role
(19:40):
has switched.
If they are more like a childtoday, if they're more like a
teenager today, or if they areyour mother today, that can be
really tricky.
squadcaster-f9ab_2_ (19:50):
Definitely.
Track 1 (19:51):
that?
squadcaster-f9ab_2_03-20- (19:52):
Well, so first, I just, I was thinking
as you were sharing that storywith your mother that she was
probably seeing you in yourhealth condition and your needs
and trying to be strong for youand trying to be there for you
and trying to be your mom andsupportive and, you know, she
always probably handled thingsand protected you and looked out
(20:14):
for you and suddenly In thisreally rather dramatic way,
it's, it's revealed that she,she's not who she used to be.
And she, she can't do this foryou.
And, and I would imagine thatwas very hard for her and kind
of, and, and really unnervingfor you as well.
Track 1 (20:37):
We both were just looking at each other and
thinking, I don't know.
I don't know what we do rightnow.
I finally took over and just ina very distinct stutter tried to
spell out my email address.
And then when we got off thephone, I looked at her and said,
Mom, what's going on?
What's happening with yourhandwriting?
(20:59):
What's going on?
And, and, you know, that startedhonest conversations, but yeah,
thank you for.
Thank you for holding thatmoment with me.
squadcaster-f9ab_2_03-20- (21:12):
Yeah, well, you know,
Track 1 (21:13):
those things are switching around, how do you,
how do you, how do you workwith, with your own emotions and
theirs
squadcaster-f9ab_2_03-20- (21:21):
well, I think a couple of things that
I would say about that back.
1 question is as you look atyourself in this relationship
with your loved one who needscare.
How much of a disconnect isthere between what you are
currently doing and what youthink you should be doing and in
(21:42):
the relationship and the greaterdistance, the greater difference
there is, the greater gap thereis between what you actually are
doing In terms of caregivingtasks and what you think you
should be doing in therelationship.
The greater internal conflictthat you're going to have about
this whole caregiving thing.
(22:02):
And you need, if you're findingyourself in this state of kind
of cognitive dissonance, whereyou're like, I'm doing all this
stuff for my loved one.
I don't want to be doing it.
You know, if you find yourselfdepressed or anxious or guilt
ridden then you need to dosomething to try to address
that.
And I often encourage familycaregivers to seek help
(22:27):
professional help, help with,from mental health counselors or
therapists or social workers orpastoral counselors, or even
just a good friend.
Can really be meaningful.
But ultimately there I talkabout three different ways that
a family caregiver might resolvethis internal conflict that
(22:49):
they're feeling.
One is by.
Redefining the role that youhave in the relationship.
And so you can either say toyourself, you know, I've always
been a son to, to my father.
And because my father now is, is87 years old.
(23:11):
And he needs help.
And his health condition isworsening.
I'm going to redefine who I amin this relationship.
And I'm going to step out of theson role.
And into the caregiver role.
And I'm going to accept that.
I I I I honor my, my father.
I honor my history with him.
(23:32):
I'm still his son, but I'm, I'mless his son today because he
needs me to be a caregivertoday.
And I'm going to be hiscaregiver.
that's something that we callassimilation.
This is rooted in Piagetlearning theory.
Another, a second way to thinkabout it would be to redefine
(23:52):
what it means to be a son.
And so you basically say toyourself, okay.
Historically, I've been a sonfor my dad and he, because he's
87 years old and because he hasthis health condition and
because he needs help for metoday, the, the terms of being a
son are different.
(24:12):
I'm going to redefine what itmeans to, to be a son for my dad
at age 87 and being a sonencompasses and includes all of
these tasks of caregiving.
And so.
I'm just a different kind of sontoday and I'm okay with that.
And, and the thing is you haveto kind of reach that point of
acceptance here because youcan't fix your dad.
(24:35):
And so you have to kind of reachthat point that, that you're
okay with redefining these,these, this relationship.
But if you're still still havinga lot of conflict and the tasks
of caregiving are just reallydeeply affecting you kind of the
3rd approach would be tooutsource the tasks of
(24:58):
caregiving that are causing thegreatest distress and so by by
going to formal care providersYou might be able to get some
relief and reduce that conflictthat you're having within
yourself by allowing others totake over the tasks of care that
are, that are causing you somuch trouble.
And that also comes with a lotof hassles and headaches
(25:22):
potentially.
I know this as a, as a home carecompany owner, you're able to
also kind of get a rebalancingin the relationship and you
might feel a little bit morelike a son again.
Track 1 (25:36):
You know, in, as a doctor, the, the, patients that
are just flooding my mind,really, that have been
caregivers.
I have seen such a help whenthey have done that third step.
I love what you said about thefirst steps, the first one and
two.
I mean, truthfully, that's,that's helpful for all kinds of
things, not just caregiving, butdefining the role that you are
(25:57):
playing, defining the experiencethat you're having.
And assimilating or realizingthat those roles and experiences
are fluid things, and they canencompass one type of thing, and
then they can encompass anothertype of thing.
I mean, truthfully, if you thinkabout how you love anybody, if
you think about how you loveyour child, I am the mother of
this child.
And when they are an infant,they, that role includes
(26:19):
different things than when theyare 16 year old girl.
Let me tell you, if I tried totreat my 16 year old like my one
year old, that is not going tofly.
squadcaster-f9ab_2_03-20 (26:27):
right, you're exactly right,
Track 1 (26:30):
what a beautiful way to explain that and it, I think it
just goes along with our processof loving another being in this
world.
But I have had I had a, a dearpatient who had a disabled
daughter and I adjusted andworked with this, with this girl
since she was a toddler.
(26:51):
And then all the way throughwhen she was a teenager, she was
in a wheelchair, she needed shehad cerebral palsy, so could do
very little for herself.
And because of finances atfirst, this mother was doing
everything that she needed allby herself, all of the, like
running emergency trips to allof the hospitals, just
everything and trying to raisethe other children while their
(27:13):
husband worked as, as hard as hecould to get money to pay for
all of these things.
And I truly remember the firsttime that she came in.
Once they had finally been ableto hire home help just to give
her, it was, I think she hadthree or four hours twice a week
back to herself and they did thetasks that were the hardest for
(27:33):
her.
They she, she chose the ones shewanted to take off her plate
first and she would come in toget adjusted at that time where
she didn't have to handle anywheelchairs and she didn't have
any other children with her.
And it was miraculous
squadcaster-f9ab_2_03-2 (27:48):
changed her life, I bet.
Track 1 (27:50):
The difference.
Yeah.
Another patient I just sawactually this week, her she's
been caring for her mother inlaw who used to be a very sweet
woman.
She's 105 now and she's tired ofbeing alive and she's not very
sweet to this woman anymore.
And they have been just doingfull, full, full care.
(28:10):
And the mother just went tovisit someone else and she was
experiencing, I was just being asafe place for her to vent a
little because she doesn't everwant to complain because she
loves her mother in law.
She would love to help hermother in law, but having a
little break where she could beherself again and, and, and
(28:33):
rebalance, it makes, it makesthings better for everyone that
is involved, I think.
So yeah, it can come withheadaches if the company is not
great that you work with, but.
Just like everything else, youjust keep trying until you find
a good one, I think.
squadcaster-f9ab_2_03-20- (28:49):
Yeah.
Yeah.
Track 1 (28:51):
And, and the money, I think you're going to end up
paying the money anyway,truthfully.
How I look at, at mental health,which this would categorize for
me as mental and physicalhealth, but mental health or
physical health, it's like it,you're going to spend the money
anyway.
You're going to spend it on thefront end or in the middle of
it, trying to help yourself stayhealthier Trying to help
(29:13):
yourself balance, get out of thestress responses, do those
things that care for ourselves,or you're gonna fall all the way
apart, and then you have tospend the money to put yourself
all the way together.
So like, the money is hard.
It's a hard subject for it, butif there's a way to, that, that,
that balance point has helped mecome up with money before, and
it's always been the betterchoice for me, at least.
squadcaster-f9ab_2_03-20- (29:36):
Yeah.
I, I love what you were sayingwhen you were talking about the
the woman that came into youroffice just this week and, and
you were just giving her spaceto kind of ex release, express
herself safely acknowledge thestruggles that she's having.
You made me think of a, of ablog post.
(29:58):
I wrote a little while agocalled Five Ways You Can Support
a Family Caregiver.
And I, I just pulled it up.
There, there are five A words.
Five ways that you can support afamily caregiver with a words
and each, each word, each wordrequires a slightly different,
slightly higher level ofinvolvement from you.
(30:19):
But those words are acknowledge.
Affirm, allow, ask, and act.
And the first thing is justacknowledging that the family
caregiver is going through this.
And so often, the familycaregiver is just not even
acknowledged.
Because the needs of their lovedone are so obvious.
(30:43):
They're so acute, they'reconstant, you take your loved
one to medical appointments andall of the different treatments
and all of the health caredelivery system is focused on
the loved one, not on thecaregiver, and rarely does the
caregiver even get asked by thehealth practitioner.
You know, how are you doing?
Or wow, you know, you're doing agreat thing.
(31:05):
But then so just acknowledgingcan be Validating for the
caregiver and then affirmingtheir role Allowing them space
as you did to to just Expresstheir feelings, just get, get
the load off.
Track 1 (31:20):
are still a good person, even if this is a lot.
squadcaster-f9ab_2_03-20- (31:23):
Yeah.
Track 1 (31:23):
know you love your mother in law.
Let's just, in this space,you're a wonderful person.
She's also a wonderful person.
Also, go.
I
squadcaster-f9ab_2_03-20-2 (31:36):
even if you're having these negative
emotions, even if you're feelingresentment and dislike and stuff
like that, it's very, verynormal in this type of
situation.
And, and then asking, asking,asking the family caregiver, how
can I help?
What can I do to, to be therefor you?
(31:56):
And, And, then acting inaccordance with with whatever
they say.
Sometimes, you know, there aresiblings or other family members
who are seeing the strain thatthe primary family caregiver is
under, and they may not know howto help, or they may presume to
know how to help, which isperhaps even worse.
(32:18):
So the best thing to do is justask that primary caregiver, how,
how can I help you?
And then Do what they ask.
Don't don't offer the help thatyou think is needed.
Offer the help that is that isrequested.
And and then it can become, youknow, you can relieve the burden
for that family caregiver andshare a little bit of the load.
(32:40):
And often that draws familymembers together closer
together.
Yeah.
Track 1 (32:45):
That ask I have learned is a tender thing.
I think in a lot of community orfamily patterns or just societal
patterns.
We say, Hey, can I do anythingto help?
How are you?
And the other person says, I'mgreat.
Thanks for asking.
But I think we haven't handledwell, they're like slowly dying.
So I've learned with the ask andI learned when, since I was the
(33:09):
sick person, right.
I mean, I have seen many sickpeople.
and wanted to help and felt sortof powerless and didn't know how
to.
But I learned that some peopleask different ways.
Some people ask as if they A,really do want to help, but they
also ask for specifics.
Like I remember somebody said, Ireally want to take one thing
(33:32):
off of your to do list todaythat is hard for you, that would
be easy for me.
I have a car, I can drive, I canmake phone calls, I can.
Talk.
I know spreadsheets.
I knew whatever.
And it was a tender thing for meto say yes.
It was very hard for me to sayyes.
And I really only said yes whenpeople offered specifics and
(33:53):
made it clear that they wantedto, that it wasn't a big deal
for them to do it and that They,they were like aching to help
with something.
Like I felt like I was helpingthem with their want to help.
People came over and helped mewith spreadsheets.
Another woman came over andhelped me shift my bank accounts
around.
One woman would call when shewas on the, on the way to the
(34:14):
store and she just, She justsaid, you know what?
I know you have four kids.
I know it's hard for you to getto the store.
I'm going to the store rightnow.
What do you need?
I can get you 10 things.
Avocados are on sale.
And I was like, all right.
Like, I think the way you'reasking, I mean, obviously it's
up to the other people tocommunicate their needs and you
(34:36):
can't make somebody say yes.
And you can't control what'sgoing to come out of their mouth
about what they really need.
So I love that you said.
Ask and with the intention thatyou'll, you'll do what they say.
I mean, obviously if it's inwithin your, your boundaries of
money or time or whatever, butyes, I love that.
That same woman I'm thinking offamily members would ask her
(34:57):
cause they could see it was astrain, but when she said, I
would love it if you could watchover mom for a week or two.
They all started backpedalingand she's like, why does anybody
ask if no one's going to helpjust makes me angrier.
So I love you pointed that out.
squadcaster-f9ab_2_03-20- (35:16):
well, I think that sometimes what
happens in families when youhave a primary caregiver, who's
caring for the aging or disabledloved one, and then, then you
have others.
who are not the primarycaregiver.
It's, it's sometimes the primarycaregiver can grow resentful of,
of those other family memberswho in their mind, aren't
(35:38):
stepping up sufficiently, ormaybe you know, maybe you have a
brother who's out of town, youknow, you're caring for your
mother and you have a brotherwho's, who lives out of town and
he's not around.
And, and his way of offeringhelp as he comes in for For a
visit for the weekend and takes,takes mom or dad out for a nice
(36:00):
you know, nice evening orsomething.
And then, and then offers abunch of suggestions on what you
can do better as a, as the, asthe primary caregiver and then
leaves and goes back to whereverthey live.
Track 1 (36:11):
you're speaking to that
squadcaster-f9ab_2_03-20-2 (36:13):
This is
Track 1 (36:14):
they will feel helpful and it does not feel helpful.
squadcaster-f9ab_2_03-20- (36:17):
Yeah, And, and family caregiver, the
primary caregiver can be alittle bit resentful about that,
you know, and, and then mom ordad, they're just like, Oh, I
call this person Johnny in mybook.
Johnny.
Oh, Johnny.
So great.
Oh, Johnny.
So wonderfully.
He's just came and spent timewith us.
Isn't he awesome.
He makes me feel so good.
And then they turn around andsnarl at you because you didn't
(36:39):
butter the toast properly.
And you're living, you know,you're living day in and day out
with them.
And so this, this,unfortunately, this type of
dynamic happens.
And so to those primarycaregivers in situations like
that, I just try to say, youknow, just you have to let it
roll off of you.
Have you have try to developsome, some Teflon, I guess, and
(37:00):
just recognize that, you know,any suggestions from Johnny or
other family members, you justhave to assume that they're
coming from a place of love.
not judgment.
And if it's a good suggestion,implement it.
And if it's not, just let it go.
And don't worry about it.
But you as the primary caregiverknow better how to help your
(37:23):
loved one.
Track 1 (37:26):
I'm so glad you spoke to that example.
I'm thinking of other caregivingscenarios that I'm wondering if
you can help with.
I do know quite a few peoplewhose parents are aging and they
don't live near and someone, oneof their siblings perhaps lives
near, but they don't really likehow they're taking care of their
(37:46):
mom or dad.
What do you do if you're, ifthat role is flipped and you're
the Johnny, but maybe you're notsure the primary caregiver is
doing a very good job.
Yeah.
but but you're not there.
What are some, some wisdom for
squadcaster-f9ab_2_03-20- (38:02):
Yeah.
You know, these, thesesituations, they, they're so,
they're so situational, right?
Every, every, every situation isdifferent.
And so maybe just a couple of ofprinciples that I would throw
out there to consider in thattype of a situation.
One one kind of overarchingprinciple is to always try to
(38:27):
extend as much decision makingas possible.
To the care receiver and ifwe're just if we're just use the
example hypothetically of aparent an aging parent and let's
just say that there are multipleadult children now who are
worried about their aging parentand and they're trying to figure
(38:48):
out how to best support theaging parent.
Allowing the parent to beinvolved in discussions about
their life about the course ofcare that they will receive
about where they will liveabout.
The things that are important tothem, that is super, super,
super important.
(39:09):
You know, unless your parent is,has, has severe dementia and is,
is incompetent and incapable ofmaking decisions for themselves.
You always want to afford yourparent as much input as possible
in these decisions.
And, and I have seen situationswhere adult children presume
(39:31):
that their parent is lesscapable.
Then they really are and thereason for that, I think is,
well, they used to see mom ordad as a fully functioning,
fully capable, healthy person.
And now they're not, and nowthey have some limitations, but
merely having limitationsdoesn't mean that they can't
(39:53):
direct their own lives anddirect their own affairs.
And as an adult, they should beable to do that as much as
possible.
And if you.
Or, and your siblings come inand try to just take over,
that's going to create someresentment with your parent and
it's not going to turn out well.
So, so that is important.
(40:16):
And, you know, it could, itcould mean a family council,
right?
Where maybe all the siblings gettogether with the parent.
I don't want to call it anintervention.
I don't think you want to stagean intervention either.
That can be.
that can be confrontational,right?
(40:37):
But a family counsel and say,Hey, look, mom or dad, we're,
we're all concerned about you.
We know, we know that you've,your things are different now.
We've seen some changes in yourhealth and we've seen, we're
concerned about your wellbeingand we just want to do what's
right for you and what's, andwhat's best for you.
And we're here to help you.
And.
We're here to confront this thisdisease or this illness as a
(41:01):
family.
And we want to work together to,to help you and support you as
much as possible.
What does that look like?
Let's have a conversation aboutit.
Track 1 (41:12):
I love that.
Instead where an interventionwould be like, this is what it
looks like.
You are doing this.
A counsel would be, we want tosupport you.
What does that look like foryou?
squadcaster-f9ab_2_03-20 (41:23):
that's right.
Track 1 (41:24):
want to be?
What do you want to do?
That's how I would like to betreated.
squadcaster-f9ab_2_ (41:27):
Absolutely.
Track 1 (41:27):
how I would like to be treated.
Yeah.
squadcaster-f9ab_2_03-20-20 (41:29):
And when families are able to kind
of, to approach thiscollectively and to share in, in
the responsibility ofcaregiving, each person doing
their part, doing what they'reable to do and kind of pulling
together instead of driving oneanother apart, it engenders more
(41:51):
love and it can really be a verybeautiful thing, even though,
let's say that your, your parentis dying.
for listening.
At the same time, even amid thattype of sorrow and loss and
grief, you can find a lot ofbeauty and love and, and,
compassion for one another.
And so, yes, there's this burdenassociated with caregiving, but
(42:16):
there's also a certain beauty toit.
Track 1 (42:19):
Yeah.
When my father passed fromprostate cancer, I was pregnant
with my first, I remember, andin graduate school and came home
on break, and as he passed overthe next week or two, I think
that honestly was one of themost special, sacred times for
my family.
I mean, it was handled withrespect.
(42:39):
We were together in it and Ithink you're right.
There is a collective beauty orthere can be, you know,
depending on how things go.
I've been in other scenarioswhere people are close to death
and on their way out and thereis family arguing and there is
shenanigans like going to changedeeds on stuff
squadcaster-f9ab_2_03-20- (42:59):
Yeah.
Track 1 (43:01):
just hiding medical treatments.
squadcaster-f9ab_2_03-20-2 (43:03):
It's very sad to see that.
Track 1 (43:05):
yeah, the decisions that we make, I think, help it
to become more of an experiencethat we will treasure or an
experience that always gives usthe shivers.
It's the same as always.
It's how we act.
It's what we do.
It's what we do with what we'regiven always.
squadcaster-f9ab_2_03-20- (43:20):
Yeah, you're exactly right.
Becca.
Track 1 (43:23):
So you said you had a few tips and then I have to sort
of divert you.
So let's go back.
If you weren't the main person,one was extending decision
making to the parent as much aspossible.
squadcaster-f9ab_2_03-20-20 (43:33):
So, okay.
So, if we're going back, if youwere the sibling and you're,
you're trying to work with theprimary caregiver and you have
some suggestions.
So I think another part of thatwould be.
It might be, it might becomenecessary or appropriate to have
a kind of a sidebar conversationwithout your parent and say, hey
I really, I've been seeing whatyou're doing as a family
(43:56):
caregiver as, as the primarycaregiver in the family.
And.
How's it going?
How do you feel like it's going?
And, and what can I do to help?
And, and just having a an openconversation, you may find that
the primary caregiver in thefamily is really struggling and
has concerns.
And maybe some of those concernsare the same ones that you have.
(44:20):
And so you're opening the doorfor kind of some joint problem
solving there.
You may not be aware of,
Track 1 (44:25):
to handle that.
squadcaster-f9ab_2_03-20-20 (44:26):
You may not be aware of how much
stress the primary caregiver isunder.
And I will say this, Becca I've,I've myself, I myself have
experienced this and I've seenit time and time again with
family caregivers that Othermembers of the family and even
the care receiver cannot and donot understand fully the, the
(44:49):
pressure, the emotional rollercoaster the challenge, the, the
internal struggles that theprimary family caregiver goes
through.
If you have a primary caregiverwho is spending the vast
majority of their time caringfor a loved one.
The load is great.
(45:10):
And the load is not justphysical.
It's also emotional, andspiritual, and mental.
And it is relentless.
And When you kind of maybe areinvolved in the periphery, you
check in and you check outunless you've experienced that
load before you, you cannotunderstand what it's like for
(45:32):
them.
And so exercising a little bitof grace.
Is important.
I think
Track 1 (45:39):
Yes.
I love your suggestion to askthem how they're really doing
and that your concerns may bethe same as their concerns.
That is so different thansaying, Hey, I noticed this.
Why are you making thatdecision?
Which, you know, is
squadcaster-f9ab_2_03-20-2 (45:54):
it's just a rush.
It sounds like a rush tojudgment, doesn't it?
Track 1 (45:57):
exactly.
And if you're under that muchstrain and little miss Susie,
little sister is asking you whyyou're doing it that way.
Really?
It's pretty obvious to thinkthere will probably be snappy
frustration and resentmentbuilding.
But as in all things, thathonest ask, the compassion about
how you're doing.
(46:18):
I have a thing on my wall thatsays no love is ever wasted and
it's on my wall because Ibelieve it.
I mean, you could ask a questionto someone about how they're
really doing and they may betruthful with you or they may
not.
But at least you showed up withlove, which is not wasted.
And if they decide to betruthful, I think you're right.
(46:39):
You probably would be concernedabout the same things.
And then you can have an honestconversation.
And then that's how we cometogether as a family.
I love that distinction youmade.
squadcaster-f9ab_2_03-20- (46:48):
Well, I love the, your, your quote
there.
No love is ever wasted.
it it made me think Becca offamily members of people who
have dementia and Sometimesfamily members come to this,
once the, in the advanced stagesof the disease where the person
with dementia is, is nonresponsive, they don't recognize
(47:11):
their family members you may betempted to say, oh, I don't, I
don't need to go visit mom ordad because they, they don't
even recognize me.
And that idea, no love is everwasted.
I that's something that I, Imight, I might borrow that
Becca, if that's okay with you.
Track 1 (47:29):
Well, it's on my wall from someone else.
It doesn't have a person thatsaid it or I would quote them.
It's just a thing that I cutout.
squadcaster-f9ab_2_03-20-20 (47:37):
but so that's something that, you
know, showing that kind of loveand just being there for your,
for your, your person who hasdementia It's a beautiful thing.
That is not a waste of your timeor energy.
And they will benefit that fromthat expression of love.
And so will you.
Track 1 (47:54):
think that is true.
You know, when there was aperiod with my brain injury and
all the things I had going onwith my spinal cord that I could
not speak or move.
And it was really something forme to be in there, but not be
able to communicate very well.
I would try to just like shinemy appreciation out of my body
(48:14):
and hope that energy would whackthe people next to me or
something.
But that experience taught me somuch.
Number one, we don't know reallywhat they are picking up.
And I think that's true forcomas, for strokes, for possibly
even dementia.
I mean we have had familymembers that have had dementia.
My husband's grandmother passedfrom dementia.
(48:37):
It's one of those things thatjust gives me the shivers
truthfully, but I've looked intheir eyes and you're not sure
that they really know anything,but Who are we to say what that
love is for?
I mean, it can be teaching us.
It can be teaching our children.
It can be affecting the othercaregivers.
It can, when we look at, when weput love into a space, what will
(49:00):
it do?
And we think it's going to havea certain outcome.
If it doesn't have that outcome,we might think it's wasted, but
the outcomes of love, we nevercan guess.
It is an energy that justripples and ripples and ripples.
So I say, Show up, like justshow up with the love that you
can with the gratitude that youcan with the open questions that
you can and, and just watch whathappens really.
squadcaster-f9ab_2_03-20- (49:24):
Amen.
You know, as you were speaking,Becca, I was just thinking about
this, this gap in time where,you know, As you mentioned at
the front of the show, we, wemet a few years ago and, and
only recently were able to toreconnect and I can just, I can
only imagine what you wentthrough personally with those
(49:47):
health challenges.
And I look at you today and you,you look fantastic.
It's the Becca that I knewbefore.
And it's, it's almost like, youknow, that, that whole journey
that you went through.
I mean, my heart goes out to youand your family and.
I'm really just impressed at howyou've taken that experience
(50:08):
and, and your professional lifeand sort of brought that to
create this podcast to try tohelp others.
And so I just, I just salute youfor that.
And, and I'm so glad that you'rein a better place today than you
were.
Track 1 (50:25):
Thank you.
And it's similar to yours,right?
I mean, this happened and Irealized that just ocean, the by
yourself in the ocean No oneseems to know what to do to help
you kind of feeling when you arethe patient.
And I thought I wascompassionate as a doctor.
I was compassionate as a doctor,I
squadcaster-f9ab_2_03-20-2 (50:46):
Sure you were.
Track 1 (50:47):
but you just can't know until you're there.
Same as a caregiver.
You can't know until you'rethere, what that's really like.
And same as most people thatlaunch into doing something that
feeds their soul, it's, you findsomething that needs to change.
And.
I think there's just such goodinformation and there's such
good people out there that havehelped me or that I know are
(51:10):
helping other people.
And the whole point of thepodcast really is to connect
more people with those people.
squadcaster-f9ab_2_03-20 (51:17):
That's awesome.
Track 1 (51:18):
with you, Erin, more people with you.
So if people want to get, I knowwe need to wrap it up because
you have another appointment,which I'm happy about, you're a
busy dude.
So how, if people want to followup, hear more of you, see more
of you, or read your blog postsor your book.
Can you tell me where they goand how they can follow up?
squadcaster-f9ab_2_03-20- (51:41):
Yeah, so my website is caregiving
kinetics.com and kinetics isspelled KNI.
No, that's not how you spellkinetics.
I say this all the time.
Caregiving kinetics.com.
K-I-N-E-T-I-C-S caregivingkinetics.com.
There is a blog there.
There's also a bunch of modelsthat.
(52:04):
are about caregiving that aredownloadable and they're freely
accessible to family caregiversand also to licensed
professionals who support them.
They're there for the takingand, and they've been shown to
be very useful for familycaregiving situations.
The book is called WhenCaregiving Calls.
(52:25):
Guidance as you care for aparent, spouse, or aging
relative, and you can get it inpaperback or ebook or audio
book.
Track 1 (52:33):
Oh, fun.
That's wonderful.
Are you reading the audio book
squadcaster-f9ab_2_03-20-2024 (52:40):
I am the reader.
Yes, I did it myself.
I, I had to come around to thatand I'm not like some kind of
radio voice, but I, I, I tooksome auditions and I heard it
just incredible velvet radioguy.
And as soon as I heard him readmy words, I was like, oh, I have
(53:00):
to read this book.
Track 1 (53:02):
Yes, I'm saying yay because I think it could come
through your voice differentlythan anyone else.
You have a very strong mix oflogic and compassion, so I'm
glad you
squadcaster-f9ab_2_03-20-20 (53:13):
Oh, thank you Wow.
Track 1 (53:14):
your own.
Okay.
And your contact information isalso on your website as well.
So Erin, thank you so much forthe time you've given to us
today and the wisdom you'veshared.
The work you do in the world isimportant and, and everyone I
know.
We'll probably be caring forsomeone if they haven't already.
(53:35):
So thank you for sharing thissince everyone, truly everyone
can use it.
Thank you for what you do.
squadcaster-f9ab_2_03-20- (53:42):
Thank you, Becca.
Well, I'm hoping you got asmuch out of that as I did.
I just can't think of anyonebetter equipped to teach us then
Aaron blight.
Takeaways for me would be numberone.
Part of the reason thatcaregiving can be so mentally
(54:03):
frustrating.
Is that the roles change and ourroles that we have with each
other and family systems areloaded with meaning.
So his tips to redefine yourrole, I thought were really
helpful.
Like what it means to be a, forexample, daughter in this role
and being a daughter in thisscenario now includes these
tasks.
(54:23):
Interesting how we need toupdate ourselves.
It can also be really helpful tooutsource the tasks that give
you the greatest distress togive yourself that extra bit of
head space, which helpseverybody.
I also like how we address thefive ways to support a family
caregiver.
So if you know someone who isoffering a lot of family
support, So if you know someonewho is caregiving in a family,
(54:46):
It's so helpful to know how toreach out to them.
First of all, acknowledging whatthey are doing and affirming its
importance.
Allowing them to have thisspace, to have the emotions that
they have and to express themand then ask how you can help.
In meaningful ways and actuallyact on what they say.
And then I also enjoyed.
(55:08):
What he shared about if you arenot the main caregiver.
And how you can extend thedecision-making to the person
you're caring for as much aspossible if that's appropriate
or also what you can do if youare not the main caregiver, but
you're trying to support themain caregiver asking questions,
acknowledging, validating.
And asking how they are.
(55:29):
Again, I think.
most of us will be in thatscenario at one point or another
in our lives.
So I'm so grateful that Erin waswilling to come on.
And teach us how it's done.
For more of his follow-up youcan find all the links to his
book and his website in the shownotes.
Next week is the final episodeof season one.
And I am leaving you with anempowering conversation from a
(55:50):
great guest.
Her name is Holly bridges.
She lives in Western Australia.
And by the end of the episode,you will probably along with me,
just really want to go and visither there.
We can look at the stars bynight and during the day just
geek out on nervous systemintegration.
That is what she does.
So if you've been listening allseason long, you've heard a few
(56:12):
different guests reference.
Stephen Porges has worked onwhat is called the polyvagal
theory.
He put together how our nervoussystem works with safety.
And how so much of our responseslike fight or flight or rest and
digest have to do with safety.
And he also identified otherstates that our nervous system
can be in like freeze or fawn.
(56:35):
He made a very amazing butcomplicated book and theory
about it and she simplified anddistilled it down.
Talking about things as itrelates to autism or PTSD kind
of responses where people mayfreeze or fawn, she simplified
it.
Like someone can do only whenthey really understand it.
(56:57):
You know how a master can saysomething in very few words that
it takes a novice, a lot ofwords to say, that's what I feel
like when I read her book.
So she is the author of reframeyour thinking around autism.
It's a fantastic book, justabout nervous system regulation,
but especially if you areinvolved in the life of anybody
who is on the autistic spectrum.
(57:18):
It's a really great help to helpyou understand.
What is happening in theirworld.
What I noticed though, as itrelates to what's happening in
my world.
And it's relating to what peopletalk about in the world of
trauma.
What people talk about in any ofthe states where we get into
overwhelm and anxiety, it's justour nervous system.
And she explains it really well.
She also created the anxietyreframe technique.
(57:41):
And that is where she works withpeople of all levels of anxiety
or meltdown or shut down.
And helps them come back throughtheir senses.
In a beautiful way to get theirnervous system to balance.
She's an author teacher thoughtleader, keynote speaker, and she
also is developing scientificworks for scientific journals.
(58:01):
I got to read through the latestof hers and it's really good
stuff.
So we are in good hands for thefinal episode next week.
I'm excited to meet you here.
Hello and welcome to the WhatReally Makes a Difference
podcast.
I'm your host, Dr.
Becca Whittaker.
I've been a doctor of naturalhealth care for over 20 years
and a professional speaker onhealth and vitality, but
everything I thought I knewabout health was tested when my
own health hit a landslide and Ibecame a very sick patient.
(00:22):
I've learned that showing up forour own health and vitality is a
step by step journey that wetake for the rest of our lives.
And this podcast is aboutsharing some of the things that
really make a difference on thatjourney with you.
So grab your explorer's hatwhile we get ready to check out
today's topic.
My incredible guest network andI will be sharing some practical
(00:45):
tools, current science andancient wisdom that we all need,
no matter what stage we are atin our health and vitality.
I've already got my hat on andmy hand out, so let's dive in
and we can all start walkingeach other home.
(01:07):
Oh, the strap in, because todaywe are talking about something
you may not be thinking of yet,but you will be at at least one
point in your life.
I'm almost sure of it.
Today we have Dr.
Aaron blight with us, and he isthe founder of caregiving
kinetics.
He was named as one of the top100 health care leaders by the
international forum onadvancements in healthcare.
(01:29):
And he's an internationalspeaker and a consultant on
caregiving.
Aging and healthcare, why wouldI be so excited about this?
It's because I've heard Aaronspeak and he's a personal friend
of mine.
So we've had discussions aboutcaregiving and it is true.
What he says that most of us atone point in our life will
either be caregivers forchildren, family members, loved
(01:50):
ones or friends, or we will becaregiving for, and we will
experience.
The chaos that can be the rolereversals or changing of rules.
In that situation.
Aaron shares vulnerably aboutwhat happened in his personal
life.
That let him know.
There was a lot more tocaregiving than he thought there
was both personally andprofessionally, and he's made it
(02:13):
a life goal of his to walk otherpeople through the process so we
can all do it better.
He's worked on policy forcaregiving, with Medicare and
Medicaid.
He teaches groups.
He travels internationally toteach and to speak.
And he's just a really greatperson on top of that.
So without further ado, let'shear what Dr.
Aaron blight has to say in thisconversation.
Track 1 (02:36):
Uh, Erin, I am so grateful that you are here to
talk to us and, and help us makeour way through something that
we likely will all face in ourlives.
So thank you so much for comingon the show to help us
understand how we can have morehealth and vitality, even when
we're in situations we couldn'thave planned for like caregiving
for a loved one or receivingcare ourselves.
(02:58):
You are my favorite person totalk to about this.
So thank you so much for joiningin with us today.
squadcaster-f9ab_2_03-20- (03:04):
Thank you, Becca.
I'm really excited to be herewith you.
It's so good to see you.
Track 1 (03:09):
Remind me again what state you live in.
squadcaster-f9ab_2_03-20-20 (03:11):
I'm in Virginia.
Track 1 (03:12):
Virginia.
I knew it was somewhere pretty.
That's where I logged it.
So I met you when we were bothgoing through training to be a
professional speaker with
squadcaster-f9ab_2_03-20 (03:23):
That's right.
That's right.
Track 1 (03:25):
And, that was terrifying and wonderful and
exhilarating and anxietyproducing experience.
squadcaster-f9ab_2_03-20-202 (03:32):
It was.
And you were, and you werefantastic.
I remember.
You were a standout Becca.
Yeah.
Track 1 (03:38):
Thank you.
Thank you.
I really do love that.
I hope to get back to it at somepoint, but I remember yours.
That was how I was introduced toyour work because I had never
thought of the truth that mostof us will be called upon to
care give at some point, littlekids failing, failing health,
(04:01):
you know, in parents or friendsor spouses.
And when you began to speak, Ithought, wow, there's a whole
world out here that I hadn'teven thought about and that I
think most people don't thinkabout until they're tossed into
it.
And once you're tossed into it,you're just kind of swimming.
I mean, there's the anxietyabout the person that you're
(04:22):
caring for.
And I know a lot of people endup just taking care of that
person and, and sort of steppingtheir life back.
Yeah.
But I take care of a lot ofcaregivers, like when they get a
moment and they get to come inand they are thrashed human
beings.
squadcaster-f9ab_2_03-20- (04:41):
yeah.
Track 1 (04:42):
So as you were speaking, you know, names and
faces were coming into my mindof people that I wished I could
share your speech with.
So I'm grateful that you keptgetting training and that you
do.
Go to speak to groups so thatmore people can hear this
information because I think it'sso valuable, Aaron.
Thank you for what you do.
squadcaster-f9ab_2_03-20- (05:01):
Well, thank you, Becca, that that
means a lot to hear that fromyou.
And you're right.
Caregiving hits everyone at somepoint in time.
And I think in my case, it justhappened at a, at a relatively
young age, at a time that I justdid not expect it.
And it really transformed mylife.
It, it changed our family.
(05:22):
It, it ultimately changed thedirection of my career.
Track 1 (05:25):
Would you please tell me how you got into this?
What happened at a young age andhow did you decide to transmit
that into teaching other peopleabout caregiving?
squadcaster-f9ab_2_03-20- (05:37):
Yeah, you know, Becca, I never
envisioned myself as acaregiving expert or a
caregiving speaker when I wasyoung.
But really what happened is Iwas 29 years old and my mother
in law got an unexpected braintumor diagnosis.
And at the time I was actuallyworking in the federal centers
(06:00):
for Medicare and Medicaidservices.
I was in the Medicaid program.
I was working in the disabledand elderly health programs
group, writing national healthcare policy for elderly and
disabled people, but I didn'treally know anything about what
it meant to be elderly ordisabled.
I was 29 and.
Relatively healthy and we wereraising our young family and my
(06:23):
mother in law just out of theblue got a brain tumor diagnosis
and they gave her weeks to liveand they recommended immediate
brain surgery.
They said that if she survivedthe O.
R.
And if the surgery wassuccessful, she might live six
to nine months, best casescenario.
Track 1 (06:43):
wow.
squadcaster-f9ab_2_03-20-202 (06:44):
So the extent of our thinking here
was, mom needs help, we're goingto help her.
Period.
It was that simple.
And she needed a place to stayafter her brain surgery.
So she moved into our home torecover.
She survived the brain surgery.
The brain surgery was successfuland she went on to live five and
(07:05):
a half years after that originaldiagnosis.
So she was a miracle, but shewent through radiation,
chemotherapy, another brainsurgery, all while she lived in
our home.
And so we were thrust into thefamily caregiving role.
We were sandwich generationraising our young children and
also trying to care for mymother in law at the same time.
(07:27):
And it was very, Difficult.
Very, very difficult for us.
Somehow we made it through.
But to be honest, Becca, I was areally lousy family caregiver at
the time.
And I had no idea what I wasdoing.
I had no idea how profound thiswas going to affect us.
(07:48):
And ultimately the cancer hadgone into remission, but then,
but she was in cognitive declinefor the rest of her life.
And so she needed help withdaily tasks and things like
that.
And so we were always helpingher.
And after she passed away, thecancer actually returned and she
opted not to, not to have anymore treatments.
(08:10):
She just let the cancer take itscourse.
But after that because of thefamily caregiving experience, I
left Medicaid and opened a homecare company to help families
like mine.
We, we served thousands ofpeople over the, the years there
in the Northern ShenandoahValley of Virginia, the Eastern
Panhandle of West Virginia.
(08:31):
And then I went back to schooland got my doctoral degree and,
and studied caregiving as aphenomenon of social science.
And after selling my home carebusiness this is what I do
today.
I, I wrote a book on caregivingand I speak to groups all over
the world about caregiving.
so for me, it's very much a acause, a purpose.
(08:53):
A passion.
I know that family caregiversneed help and support and I know
what it's like to be flounderingand unsure what to do.
And so I'm just grateful that Ihave the chance to share these
things.
Track 1 (09:09):
Oh, You encapsulated that story so well.
And I think, you know, I don'tknow, many of us know what we
are getting into.
If we're going to care, givesomeone, it's usually for that
same reason.
We know one thing, someone welove needs help, or someone
doesn't have anyone else, or,you know, all the reasons that
(09:29):
we go into, it's not like wealready know what we're doing.
And we like, put on oursuperhero suit and are always
kind, always patient, alwayshave the right answer suit.
Right.
squadcaster-f9ab_2_03-20- (09:42):
Yeah.
Track 1 (09:43):
do that.
So, so thank you for yourvulnerability of, I did not know
what I was doing.
And just like so many thingsthat are hard, I think it
launches us into our life, likeour real life, the things we're
really here to do.
If we follow the signs, reallyfollow our impressions and our
things we want to learn and theholes that we see in the system
(10:05):
that we know need to be fixed.
And if it's to be, then I'mgoing to step forward to help it
out, kind of.
That's what I hear from thatstory.
And that's what I know a lot ofpeople experience.
So thank you for speaking tothat.
What are some of the main thingsthat you wish you would have
known going into that, that youmaybe did one way that you
(10:27):
thought was correct, that younow know with more education and
more experience could have beencausing more problems For her or
for you or for the family.
What are just some main thingsthat you Thought were good that
maybe aren't so good to do
squadcaster-f9ab_2_03-20- (10:47):
Well, one thing, Becca, that I, I
really, that really, reallystruck me that I learned and and
that I share I talk about thisin my book when caregiving calls
guidance as you care for aparent, spouse or aging relative
and I include this in some of myworkshops across the country.
(11:09):
And that's something calledFamily Caregiver Identity
Theory.
And it comes from a couple ofapplied gerontologists, Rhonda
Montgomery and Carl Koslowski,who are both retired now.
Actually, Carl Koslowski passedaway.
He had Parkinson's.
But he was at the University ofNebraska Omaha.
(11:31):
And Rhonda Montgomery was at theUniversity of Wisconsin
Milwaukee.
And they spent about 28 yearsstudying family caregivers.
Some 20, 000 family caregiverdyads, dyads meaning the two,
the caregiver and the carereceiver, were the subject of
their research.
(11:52):
And I was exposed to theirresearch in connection with my
doctoral dissertation.
And so when I was doing myliterature review, I learned, I
discovered their, their work andI was just kind of blown away by
it, Becca, I couldn't, it was sointuitive and it also explained
(12:14):
really why my wife and I hadsuch a hard time.
Being family caregivers, and ithas to do with the changing of
roles that occur over the courseof a family caregiving.
And so the way that I like tokind of talk about this is, you
(12:36):
know, before caregiving entersyour relationship, you have an
established historicrelationship with your loved
one.
And that could be.
You know, mother, daughter,mother, son, husband, wife,
grandchild, grandparent,whatever the case may be, your
role in your relationship withthat person has always been a
(13:00):
family role, right?
And let's just use the exampleof, let's say an adult daughter
who's caring for her agingmother, right?
That your role has always beendaughter and that that role of
daughter is, is loaded withmeaning and it shapes how you
interact with your mother andhow you respond to your mother
(13:21):
and how you think about yourmother and how she thinks about
you and the things that she saysto you.
And you know, even as adults,some of those childhood
patterns.
And scripts continue to, to playout, right?
Track 1 (13:37):
oh yeah,
squadcaster-f9ab_2_03-20-20 (13:38):
And if, if your mother as an, as an
older person develops a healthcondition and requires
assistance from you now you findyourself involved in, in tasks
that are different than what youdid before with her.
Track 1 (13:54):
yeah
squadcaster-f9ab_2_03-20 (13:55):
You're breaking away from that historic
pattern, that historicrelationship, and it's because
of a health condition, and thathealth condition just rudely
interrupts your historicrelationship.
You don't have any choice inthis, and your mom needs help,
and so as the tasks that youperform for your mother change,
(14:17):
the way that you interact withyour mother also changes.
And so the way that you thinkabout your mother changes, and
the way that she thinks aboutyou might change, and the way
that she speaks to you mightchange, and the things that you
do together will change.
And so there's this emerging,encroaching role of caregiver
that's entering into yourrelationship.
(14:38):
And over time, With sufficienttime and sufficient decline in
health of your loved one, thatrole of caregiver has the
potential to crowd out yourhistoric familial role.
And that can be incrediblydistressing and difficult for
people.
(14:59):
And it was for me.
And it was for my wife.
You know, when I was 29, early30s, I just wanted to be a son
in law.
I didn't want to be a caregiverfor my mother in law.
And my wife, she wanted to be adaughter.
She didn't want to be hermother's caregiver.
And yet that's what we weredoing because the circumstances
(15:20):
required it.
And honestly, Becca, I never,ever adjusted to that caregiver
role in that five and a halfyears.
I kind of resented it.
And, but at the same time.
I wanted to help her.
I love my mother in law, stilldo.
She's was a wonderful person.
She treated me like a son fromthe moment that she started,
(15:40):
that I started dating herdaughter.
so I wanted to help her.
I just resented the fact thatshe needed help.
Track 1 (15:48):
Yeah.
squadcaster-f9ab_2_03-20-20 (15:49):
And so I didn't understand.
Why I was having so many, Ihave, I was having this just
internal turmoil constantly overthe course of caregiving for
her.
But once I learned about familycaregiver identity theory which
views family caregiving as aseries of role based transitions
(16:11):
that are precipitated.
by the changing healthconditions of the care receiver.
Once I started learning aboutthat and seeing it and
visualizing it, I understoodthat was, that was really the
essence of my challenge.
And I share this with familycaregivers all over, and I think
it really resonates with them.
Track 1 (16:41):
okay, like this anger I feel or this helplessness I feel
or this time period that I feellike has been stolen from me is
normal and How, how I can movethrough that a little better is
to understand the dynamic ischanging and learn to become
present with the change and whatthat is.
You know, when I was, when I hadmy, the heavy metal poisoning,
(17:07):
the brain injury in my brain.
I remember I was trying tofigure out how to do insurance
reimbursements.
So we had like a health share.
So you pay everything in cashand then you have to get
diagnosis codes and other codesand send it back into the
company.
And then they eventuallyreimburse you if you do the
paperwork.
Right.
But my brain was not workingvery well at all.
(17:30):
Numbers were confusing.
I was having a hard timespeaking.
And I couldn't remember.
almost anything.
So I remember my husband was atwork and I, my mom came over to
see if she could help me out ingeneral with things.
What we didn't know was that mymother was in cognitive decline.
(17:50):
She was
squadcaster-f9ab_2_03-20-20 (17:51):
Oh, my goodness.
Track 1 (17:51):
really well.
We now know that she hasParkinson's, but instead of
having the shaking symptoms,which I knew to look for, she
was having dementia symptoms,but she lived by herself.
She's a very smart woman.
She was masking them reallywell.
But what happened is when wewere on, when I was on the phone
with insurance and I couldn'tspeak.
So I went to like signal herwith my eyes like, Oh, this is
(18:15):
when my mom will save me here.
Like she knows my email address.
She knows my phone number.
She can spell this out for them.
Cause it's going to take me 10minutes through the stutter to
say all that.
And she's got me.
And she looked at me in panic.
Okay.
And I remember thinking, what ishappening right now?
And I looked down at her notesthat she was trying to write
(18:37):
for, for the person we were onthe phone call with, for like
how we, how we submit thesethings.
And her writing was cramped andsideways.
She's always had very beautifulhandwriting.
She was a secretary.
She can write fast.
And I looked down and I thought,that is, that is not the writing
of my mother.
And this is not.
The way that she remembers, andthis is not how she speaks.
(19:00):
And she's looking at me withintense anxiety.
Like I've just caught her insomething.
Like she was looking back at melike a child.
And I felt that role reverse.
But that was really trickybecause neither of us could do
what needed to be done.
It was the blind leading theblind.
But when you talk about that, Iremember that moment.
(19:20):
And there's been, you know, manymoments since.
Now we understand more what'shappening, so we know how to
help her.
And it's been really clarifying.
But there's been a lot of timeswhere the roles have switched
and it was not something we werevery prepared for.
you know, how much care they doneed help with how far that role
(19:40):
has switched.
If they are more like a childtoday, if they're more like a
teenager today, or if they areyour mother today, that can be
really tricky.
squadcaster-f9ab_2_ (19:50):
Definitely.
Track 1 (19:51):
that?
squadcaster-f9ab_2_03-20- (19:52):
Well, so first, I just, I was thinking
as you were sharing that storywith your mother that she was
probably seeing you in yourhealth condition and your needs
and trying to be strong for youand trying to be there for you
and trying to be your mom andsupportive and, you know, she
always probably handled thingsand protected you and looked out
(20:14):
for you and suddenly In thisreally rather dramatic way,
it's, it's revealed that she,she's not who she used to be.
And she, she can't do this foryou.
And, and I would imagine thatwas very hard for her and kind
of, and, and really unnervingfor you as well.
Track 1 (20:37):
We both were just looking at each other and
thinking, I don't know.
I don't know what we do rightnow.
I finally took over and just ina very distinct stutter tried to
spell out my email address.
And then when we got off thephone, I looked at her and said,
Mom, what's going on?
What's happening with yourhandwriting?
(20:59):
What's going on?
And, and, you know, that startedhonest conversations, but yeah,
thank you for.
Thank you for holding thatmoment with me.
squadcaster-f9ab_2_03-20- (21:12):
Yeah, well, you know,
Track 1 (21:13):
those things are switching around, how do you,
how do you, how do you workwith, with your own emotions and
theirs
squadcaster-f9ab_2_03-20- (21:21):
well, I think a couple of things that
I would say about that back.
1 question is as you look atyourself in this relationship
with your loved one who needscare.
How much of a disconnect isthere between what you are
currently doing and what youthink you should be doing and in
(21:42):
the relationship and the greaterdistance, the greater difference
there is, the greater gap thereis between what you actually are
doing In terms of caregivingtasks and what you think you
should be doing in therelationship.
The greater internal conflictthat you're going to have about
this whole caregiving thing.
(22:02):
And you need, if you're findingyourself in this state of kind
of cognitive dissonance, whereyou're like, I'm doing all this
stuff for my loved one.
I don't want to be doing it.
You know, if you find yourselfdepressed or anxious or guilt
ridden then you need to dosomething to try to address
that.
And I often encourage familycaregivers to seek help
(22:27):
professional help, help with,from mental health counselors or
therapists or social workers orpastoral counselors, or even
just a good friend.
Can really be meaningful.
But ultimately there I talkabout three different ways that
a family caregiver might resolvethis internal conflict that
(22:49):
they're feeling.
One is by.
Redefining the role that youhave in the relationship.
And so you can either say toyourself, you know, I've always
been a son to, to my father.
And because my father now is, is87 years old.
(23:11):
And he needs help.
And his health condition isworsening.
I'm going to redefine who I amin this relationship.
And I'm going to step out of theson role.
And into the caregiver role.
And I'm going to accept that.
I I I I honor my, my father.
I honor my history with him.
(23:32):
I'm still his son, but I'm, I'mless his son today because he
needs me to be a caregivertoday.
And I'm going to be hiscaregiver.
that's something that we callassimilation.
This is rooted in Piagetlearning theory.
Another, a second way to thinkabout it would be to redefine
(23:52):
what it means to be a son.
And so you basically say toyourself, okay.
Historically, I've been a sonfor my dad and he, because he's
87 years old and because he hasthis health condition and
because he needs help for metoday, the, the terms of being a
son are different.
(24:12):
I'm going to redefine what itmeans to, to be a son for my dad
at age 87 and being a sonencompasses and includes all of
these tasks of caregiving.
And so.
I'm just a different kind of sontoday and I'm okay with that.
And, and the thing is you haveto kind of reach that point of
acceptance here because youcan't fix your dad.
(24:35):
And so you have to kind of reachthat point that, that you're
okay with redefining these,these, this relationship.
But if you're still still havinga lot of conflict and the tasks
of caregiving are just reallydeeply affecting you kind of the
3rd approach would be tooutsource the tasks of
(24:58):
caregiving that are causing thegreatest distress and so by by
going to formal care providersYou might be able to get some
relief and reduce that conflictthat you're having within
yourself by allowing others totake over the tasks of care that
are, that are causing you somuch trouble.
And that also comes with a lotof hassles and headaches
(25:22):
potentially.
I know this as a, as a home carecompany owner, you're able to
also kind of get a rebalancingin the relationship and you
might feel a little bit morelike a son again.
Track 1 (25:36):
You know, in, as a doctor, the, the, patients that
are just flooding my mind,really, that have been
caregivers.
I have seen such a help whenthey have done that third step.
I love what you said about thefirst steps, the first one and
two.
I mean, truthfully, that's,that's helpful for all kinds of
things, not just caregiving, butdefining the role that you are
(25:57):
playing, defining the experiencethat you're having.
And assimilating or realizingthat those roles and experiences
are fluid things, and they canencompass one type of thing, and
then they can encompass anothertype of thing.
I mean, truthfully, if you thinkabout how you love anybody, if
you think about how you loveyour child, I am the mother of
this child.
And when they are an infant,they, that role includes
(26:19):
different things than when theyare 16 year old girl.
Let me tell you, if I tried totreat my 16 year old like my one
year old, that is not going tofly.
squadcaster-f9ab_2_03-20 (26:27):
right, you're exactly right,
Track 1 (26:30):
what a beautiful way to explain that and it, I think it
just goes along with our processof loving another being in this
world.
But I have had I had a, a dearpatient who had a disabled
daughter and I adjusted andworked with this, with this girl
since she was a toddler.
(26:51):
And then all the way throughwhen she was a teenager, she was
in a wheelchair, she needed shehad cerebral palsy, so could do
very little for herself.
And because of finances atfirst, this mother was doing
everything that she needed allby herself, all of the, like
running emergency trips to allof the hospitals, just
everything and trying to raisethe other children while their
(27:13):
husband worked as, as hard as hecould to get money to pay for
all of these things.
And I truly remember the firsttime that she came in.
Once they had finally been ableto hire home help just to give
her, it was, I think she hadthree or four hours twice a week
back to herself and they did thetasks that were the hardest for
(27:33):
her.
They she, she chose the ones shewanted to take off her plate
first and she would come in toget adjusted at that time where
she didn't have to handle anywheelchairs and she didn't have
any other children with her.
And it was miraculous
squadcaster-f9ab_2_03-2 (27:48):
changed her life, I bet.
Track 1 (27:50):
The difference.
Yeah.
Another patient I just sawactually this week, her she's
been caring for her mother inlaw who used to be a very sweet
woman.
She's 105 now and she's tired ofbeing alive and she's not very
sweet to this woman anymore.
And they have been just doingfull, full, full care.
(28:10):
And the mother just went tovisit someone else and she was
experiencing, I was just being asafe place for her to vent a
little because she doesn't everwant to complain because she
loves her mother in law.
She would love to help hermother in law, but having a
little break where she could beherself again and, and, and
(28:33):
rebalance, it makes, it makesthings better for everyone that
is involved, I think.
So yeah, it can come withheadaches if the company is not
great that you work with, but.
Just like everything else, youjust keep trying until you find
a good one, I think.
squadcaster-f9ab_2_03-20- (28:49):
Yeah.
Yeah.
Track 1 (28:51):
And, and the money, I think you're going to end up
paying the money anyway,truthfully.
How I look at, at mental health,which this would categorize for
me as mental and physicalhealth, but mental health or
physical health, it's like it,you're going to spend the money
anyway.
You're going to spend it on thefront end or in the middle of
it, trying to help yourself stayhealthier Trying to help
(29:13):
yourself balance, get out of thestress responses, do those
things that care for ourselves,or you're gonna fall all the way
apart, and then you have tospend the money to put yourself
all the way together.
So like, the money is hard.
It's a hard subject for it, butif there's a way to, that, that,
that balance point has helped mecome up with money before, and
it's always been the betterchoice for me, at least.
squadcaster-f9ab_2_03-20- (29:36):
Yeah.
I, I love what you were sayingwhen you were talking about the
the woman that came into youroffice just this week and, and
you were just giving her spaceto kind of ex release, express
herself safely acknowledge thestruggles that she's having.
You made me think of a, of ablog post.
(29:58):
I wrote a little while agocalled Five Ways You Can Support
a Family Caregiver.
And I, I just pulled it up.
There, there are five A words.
Five ways that you can support afamily caregiver with a words
and each, each word, each wordrequires a slightly different,
slightly higher level ofinvolvement from you.
(30:19):
But those words are acknowledge.
Affirm, allow, ask, and act.
And the first thing is justacknowledging that the family
caregiver is going through this.
And so often, the familycaregiver is just not even
acknowledged.
Because the needs of their lovedone are so obvious.
(30:43):
They're so acute, they'reconstant, you take your loved
one to medical appointments andall of the different treatments
and all of the health caredelivery system is focused on
the loved one, not on thecaregiver, and rarely does the
caregiver even get asked by thehealth practitioner.
You know, how are you doing?
Or wow, you know, you're doing agreat thing.
(31:05):
But then so just acknowledgingcan be Validating for the
caregiver and then affirmingtheir role Allowing them space
as you did to to just Expresstheir feelings, just get, get
the load off.
Track 1 (31:20):
are still a good person, even if this is a lot.
squadcaster-f9ab_2_03-20- (31:23):
Yeah.
Track 1 (31:23):
know you love your mother in law.
Let's just, in this space,you're a wonderful person.
She's also a wonderful person.
Also, go.
I
squadcaster-f9ab_2_03-20-2 (31:36):
even if you're having these negative
emotions, even if you're feelingresentment and dislike and stuff
like that, it's very, verynormal in this type of
situation.
And, and then asking, asking,asking the family caregiver, how
can I help?
What can I do to, to be therefor you?
(31:56):
And, And, then acting inaccordance with with whatever
they say.
Sometimes, you know, there aresiblings or other family members
who are seeing the strain thatthe primary family caregiver is
under, and they may not know howto help, or they may presume to
know how to help, which isperhaps even worse.
(32:18):
So the best thing to do is justask that primary caregiver, how,
how can I help you?
And then Do what they ask.
Don't don't offer the help thatyou think is needed.
Offer the help that is that isrequested.
And and then it can become, youknow, you can relieve the burden
for that family caregiver andshare a little bit of the load.
(32:40):
And often that draws familymembers together closer
together.
Yeah.
Track 1 (32:45):
That ask I have learned is a tender thing.
I think in a lot of community orfamily patterns or just societal
patterns.
We say, Hey, can I do anythingto help?
How are you?
And the other person says, I'mgreat.
Thanks for asking.
But I think we haven't handledwell, they're like slowly dying.
So I've learned with the ask andI learned when, since I was the
(33:09):
sick person, right.
I mean, I have seen many sickpeople.
and wanted to help and felt sortof powerless and didn't know how
to.
But I learned that some peopleask different ways.
Some people ask as if they A,really do want to help, but they
also ask for specifics.
Like I remember somebody said, Ireally want to take one thing
(33:32):
off of your to do list todaythat is hard for you, that would
be easy for me.
I have a car, I can drive, I canmake phone calls, I can.
Talk.
I know spreadsheets.
I knew whatever.
And it was a tender thing for meto say yes.
It was very hard for me to sayyes.
And I really only said yes whenpeople offered specifics and
(33:53):
made it clear that they wantedto, that it wasn't a big deal
for them to do it and that They,they were like aching to help
with something.
Like I felt like I was helpingthem with their want to help.
People came over and helped mewith spreadsheets.
Another woman came over andhelped me shift my bank accounts
around.
One woman would call when shewas on the, on the way to the
(34:14):
store and she just, She justsaid, you know what?
I know you have four kids.
I know it's hard for you to getto the store.
I'm going to the store rightnow.
What do you need?
I can get you 10 things.
Avocados are on sale.
And I was like, all right.
Like, I think the way you'reasking, I mean, obviously it's
up to the other people tocommunicate their needs and you
(34:36):
can't make somebody say yes.
And you can't control what'sgoing to come out of their mouth
about what they really need.
So I love that you said.
Ask and with the intention thatyou'll, you'll do what they say.
I mean, obviously if it's inwithin your, your boundaries of
money or time or whatever, butyes, I love that.
That same woman I'm thinking offamily members would ask her
(34:57):
cause they could see it was astrain, but when she said, I
would love it if you could watchover mom for a week or two.
They all started backpedalingand she's like, why does anybody
ask if no one's going to helpjust makes me angrier.
So I love you pointed that out.
squadcaster-f9ab_2_03-20- (35:16):
well, I think that sometimes what
happens in families when youhave a primary caregiver, who's
caring for the aging or disabledloved one, and then, then you
have others.
who are not the primarycaregiver.
It's, it's sometimes the primarycaregiver can grow resentful of,
of those other family memberswho in their mind, aren't
(35:38):
stepping up sufficiently, ormaybe you know, maybe you have a
brother who's out of town, youknow, you're caring for your
mother and you have a brotherwho's, who lives out of town and
he's not around.
And, and his way of offeringhelp as he comes in for For a
visit for the weekend and takes,takes mom or dad out for a nice
(36:00):
you know, nice evening orsomething.
And then, and then offers abunch of suggestions on what you
can do better as a, as the, asthe primary caregiver and then
leaves and goes back to whereverthey live.
Track 1 (36:11):
you're speaking to that
squadcaster-f9ab_2_03-20-2 (36:13):
This is
Track 1 (36:14):
they will feel helpful and it does not feel helpful.
squadcaster-f9ab_2_03-20- (36:17):
Yeah, And, and family caregiver, the
primary caregiver can be alittle bit resentful about that,
you know, and, and then mom ordad, they're just like, Oh, I
call this person Johnny in mybook.
Johnny.
Oh, Johnny.
So great.
Oh, Johnny.
So wonderfully.
He's just came and spent timewith us.
Isn't he awesome.
He makes me feel so good.
And then they turn around andsnarl at you because you didn't
(36:39):
butter the toast properly.
And you're living, you know,you're living day in and day out
with them.
And so this, this,unfortunately, this type of
dynamic happens.
And so to those primarycaregivers in situations like
that, I just try to say, youknow, just you have to let it
roll off of you.
Have you have try to developsome, some Teflon, I guess, and
(37:00):
just recognize that, you know,any suggestions from Johnny or
other family members, you justhave to assume that they're
coming from a place of love.
not judgment.
And if it's a good suggestion,implement it.
And if it's not, just let it go.
And don't worry about it.
But you as the primary caregiverknow better how to help your
(37:23):
loved one.
Track 1 (37:26):
I'm so glad you spoke to that example.
I'm thinking of other caregivingscenarios that I'm wondering if
you can help with.
I do know quite a few peoplewhose parents are aging and they
don't live near and someone, oneof their siblings perhaps lives
near, but they don't really likehow they're taking care of their
(37:46):
mom or dad.
What do you do if you're, ifthat role is flipped and you're
the Johnny, but maybe you're notsure the primary caregiver is
doing a very good job.
Yeah.
but but you're not there.
What are some, some wisdom for
squadcaster-f9ab_2_03-20- (38:02):
Yeah.
You know, these, thesesituations, they, they're so,
they're so situational, right?
Every, every, every situation isdifferent.
And so maybe just a couple of ofprinciples that I would throw
out there to consider in thattype of a situation.
One one kind of overarchingprinciple is to always try to
(38:27):
extend as much decision makingas possible.
To the care receiver and ifwe're just if we're just use the
example hypothetically of aparent an aging parent and let's
just say that there are multipleadult children now who are
worried about their aging parentand and they're trying to figure
(38:48):
out how to best support theaging parent.
Allowing the parent to beinvolved in discussions about
their life about the course ofcare that they will receive
about where they will liveabout.
The things that are important tothem, that is super, super,
super important.
(39:09):
You know, unless your parent is,has, has severe dementia and is,
is incompetent and incapable ofmaking decisions for themselves.
You always want to afford yourparent as much input as possible
in these decisions.
And, and I have seen situationswhere adult children presume
(39:31):
that their parent is lesscapable.
Then they really are and thereason for that, I think is,
well, they used to see mom ordad as a fully functioning,
fully capable, healthy person.
And now they're not, and nowthey have some limitations, but
merely having limitationsdoesn't mean that they can't
(39:53):
direct their own lives anddirect their own affairs.
And as an adult, they should beable to do that as much as
possible.
And if you.
Or, and your siblings come inand try to just take over,
that's going to create someresentment with your parent and
it's not going to turn out well.
So, so that is important.
(40:16):
And, you know, it could, itcould mean a family council,
right?
Where maybe all the siblings gettogether with the parent.
I don't want to call it anintervention.
I don't think you want to stagean intervention either.
That can be.
that can be confrontational,right?
(40:37):
But a family counsel and say,Hey, look, mom or dad, we're,
we're all concerned about you.
We know, we know that you've,your things are different now.
We've seen some changes in yourhealth and we've seen, we're
concerned about your wellbeingand we just want to do what's
right for you and what's, andwhat's best for you.
And we're here to help you.
And.
We're here to confront this thisdisease or this illness as a
(41:01):
family.
And we want to work together to,to help you and support you as
much as possible.
What does that look like?
Let's have a conversation aboutit.
Track 1 (41:12):
I love that.
Instead where an interventionwould be like, this is what it
looks like.
You are doing this.
A counsel would be, we want tosupport you.
What does that look like foryou?
squadcaster-f9ab_2_03-20 (41:23):
that's right.
Track 1 (41:24):
want to be?
What do you want to do?
That's how I would like to betreated.
squadcaster-f9ab_2_ (41:27):
Absolutely.
Track 1 (41:27):
how I would like to be treated.
Yeah.
squadcaster-f9ab_2_03-20-20 (41:29):
And when families are able to kind
of, to approach thiscollectively and to share in, in
the responsibility ofcaregiving, each person doing
their part, doing what they'reable to do and kind of pulling
together instead of driving oneanother apart, it engenders more
(41:51):
love and it can really be a verybeautiful thing, even though,
let's say that your, your parentis dying.
for listening.
At the same time, even amid thattype of sorrow and loss and
grief, you can find a lot ofbeauty and love and, and,
compassion for one another.
And so, yes, there's this burdenassociated with caregiving, but
(42:16):
there's also a certain beauty toit.
Track 1 (42:19):
Yeah.
When my father passed fromprostate cancer, I was pregnant
with my first, I remember, andin graduate school and came home
on break, and as he passed overthe next week or two, I think
that honestly was one of themost special, sacred times for
my family.
I mean, it was handled withrespect.
(42:39):
We were together in it and Ithink you're right.
There is a collective beauty orthere can be, you know,
depending on how things go.
I've been in other scenarioswhere people are close to death
and on their way out and thereis family arguing and there is
shenanigans like going to changedeeds on stuff
squadcaster-f9ab_2_03-20- (42:59):
Yeah.
Track 1 (43:01):
just hiding medical treatments.
squadcaster-f9ab_2_03-20-2 (43:03):
It's very sad to see that.
Track 1 (43:05):
yeah, the decisions that we make, I think, help it
to become more of an experiencethat we will treasure or an
experience that always gives usthe shivers.
It's the same as always.
It's how we act.
It's what we do.
It's what we do with what we'regiven always.
squadcaster-f9ab_2_03-20- (43:20):
Yeah, you're exactly right.
Becca.
Track 1 (43:23):
So you said you had a few tips and then I have to sort
of divert you.
So let's go back.
If you weren't the main person,one was extending decision
making to the parent as much aspossible.
squadcaster-f9ab_2_03-20-20 (43:33):
So, okay.
So, if we're going back, if youwere the sibling and you're,
you're trying to work with theprimary caregiver and you have
some suggestions.
So I think another part of thatwould be.
It might be, it might becomenecessary or appropriate to have
a kind of a sidebar conversationwithout your parent and say, hey
I really, I've been seeing whatyou're doing as a family
(43:56):
caregiver as, as the primarycaregiver in the family.
And.
How's it going?
How do you feel like it's going?
And, and what can I do to help?
And, and just having a an openconversation, you may find that
the primary caregiver in thefamily is really struggling and
has concerns.
And maybe some of those concernsare the same ones that you have.
(44:20):
And so you're opening the doorfor kind of some joint problem
solving there.
You may not be aware of,
Track 1 (44:25):
to handle that.
squadcaster-f9ab_2_03-20-20 (44:26):
You may not be aware of how much
stress the primary caregiver isunder.
And I will say this, Becca I've,I've myself, I myself have
experienced this and I've seenit time and time again with
family caregivers that Othermembers of the family and even
the care receiver cannot and donot understand fully the, the
(44:49):
pressure, the emotional rollercoaster the challenge, the, the
internal struggles that theprimary family caregiver goes
through.
If you have a primary caregiverwho is spending the vast
majority of their time caringfor a loved one.
The load is great.
(45:10):
And the load is not justphysical.
It's also emotional, andspiritual, and mental.
And it is relentless.
And When you kind of maybe areinvolved in the periphery, you
check in and you check outunless you've experienced that
load before you, you cannotunderstand what it's like for
(45:32):
them.
And so exercising a little bitof grace.
Is important.
I think
Track 1 (45:39):
Yes.
I love your suggestion to askthem how they're really doing
and that your concerns may bethe same as their concerns.
That is so different thansaying, Hey, I noticed this.
Why are you making thatdecision?
Which, you know, is
squadcaster-f9ab_2_03-20-2 (45:54):
it's just a rush.
It sounds like a rush tojudgment, doesn't it?
Track 1 (45:57):
exactly.
And if you're under that muchstrain and little miss Susie,
little sister is asking you whyyou're doing it that way.
Really?
It's pretty obvious to thinkthere will probably be snappy
frustration and resentmentbuilding.
But as in all things, thathonest ask, the compassion about
how you're doing.
(46:18):
I have a thing on my wall thatsays no love is ever wasted and
it's on my wall because Ibelieve it.
I mean, you could ask a questionto someone about how they're
really doing and they may betruthful with you or they may
not.
But at least you showed up withlove, which is not wasted.
And if they decide to betruthful, I think you're right.
(46:39):
You probably would be concernedabout the same things.
And then you can have an honestconversation.
And then that's how we cometogether as a family.
I love that distinction youmade.
squadcaster-f9ab_2_03-20- (46:48):
Well, I love the, your, your quote
there.
No love is ever wasted.
it it made me think Becca offamily members of people who
have dementia and Sometimesfamily members come to this,
once the, in the advanced stagesof the disease where the person
with dementia is, is nonresponsive, they don't recognize
(47:11):
their family members you may betempted to say, oh, I don't, I
don't need to go visit mom ordad because they, they don't
even recognize me.
And that idea, no love is everwasted.
I that's something that I, Imight, I might borrow that
Becca, if that's okay with you.
Track 1 (47:29):
Well, it's on my wall from someone else.
It doesn't have a person thatsaid it or I would quote them.
It's just a thing that I cutout.
squadcaster-f9ab_2_03-20-20 (47:37):
but so that's something that, you
know, showing that kind of loveand just being there for your,
for your, your person who hasdementia It's a beautiful thing.
That is not a waste of your timeor energy.
And they will benefit that fromthat expression of love.
And so will you.
Track 1 (47:54):
think that is true.
You know, when there was aperiod with my brain injury and
all the things I had going onwith my spinal cord that I could
not speak or move.
And it was really something forme to be in there, but not be
able to communicate very well.
I would try to just like shinemy appreciation out of my body
(48:14):
and hope that energy would whackthe people next to me or
something.
But that experience taught me somuch.
Number one, we don't know reallywhat they are picking up.
And I think that's true forcomas, for strokes, for possibly
even dementia.
I mean we have had familymembers that have had dementia.
My husband's grandmother passedfrom dementia.
(48:37):
It's one of those things thatjust gives me the shivers
truthfully, but I've looked intheir eyes and you're not sure
that they really know anything,but Who are we to say what that
love is for?
I mean, it can be teaching us.
It can be teaching our children.
It can be affecting the othercaregivers.
It can, when we look at, when weput love into a space, what will
(49:00):
it do?
And we think it's going to havea certain outcome.
If it doesn't have that outcome,we might think it's wasted, but
the outcomes of love, we nevercan guess.
It is an energy that justripples and ripples and ripples.
So I say, Show up, like justshow up with the love that you
can with the gratitude that youcan with the open questions that
you can and, and just watch whathappens really.
squadcaster-f9ab_2_03-20- (49:24):
Amen.
You know, as you were speaking,Becca, I was just thinking about
this, this gap in time where,you know, As you mentioned at
the front of the show, we, wemet a few years ago and, and
only recently were able to toreconnect and I can just, I can
only imagine what you wentthrough personally with those
(49:47):
health challenges.
And I look at you today and you,you look fantastic.
It's the Becca that I knewbefore.
And it's, it's almost like, youknow, that, that whole journey
that you went through.
I mean, my heart goes out to youand your family and.
I'm really just impressed at howyou've taken that experience
(50:08):
and, and your professional lifeand sort of brought that to
create this podcast to try tohelp others.
And so I just, I just salute youfor that.
And, and I'm so glad that you'rein a better place today than you
were.
Track 1 (50:25):
Thank you.
And it's similar to yours,right?
I mean, this happened and Irealized that just ocean, the by
yourself in the ocean No oneseems to know what to do to help
you kind of feeling when you arethe patient.
And I thought I wascompassionate as a doctor.
I was compassionate as a doctor,I
squadcaster-f9ab_2_03-20-2 (50:46):
Sure you were.
Track 1 (50:47):
but you just can't know until you're there.
Same as a caregiver.
You can't know until you'rethere, what that's really like.
And same as most people thatlaunch into doing something that
feeds their soul, it's, you findsomething that needs to change.
And.
I think there's just such goodinformation and there's such
good people out there that havehelped me or that I know are
(51:10):
helping other people.
And the whole point of thepodcast really is to connect
more people with those people.
squadcaster-f9ab_2_03-20 (51:17):
That's awesome.
Track 1 (51:18):
with you, Erin, more people with you.
So if people want to get, I knowwe need to wrap it up because
you have another appointment,which I'm happy about, you're a
busy dude.
So how, if people want to followup, hear more of you, see more
of you, or read your blog postsor your book.
Can you tell me where they goand how they can follow up?
squadcaster-f9ab_2_03-20- (51:41):
Yeah, so my website is caregiving
kinetics.com and kinetics isspelled KNI.
No, that's not how you spellkinetics.
I say this all the time.
Caregiving kinetics.com.
K-I-N-E-T-I-C-S caregivingkinetics.com.
There is a blog there.
There's also a bunch of modelsthat.
(52:04):
are about caregiving that aredownloadable and they're freely
accessible to family caregiversand also to licensed
professionals who support them.
They're there for the takingand, and they've been shown to
be very useful for familycaregiving situations.
The book is called WhenCaregiving Calls.
(52:25):
Guidance as you care for aparent, spouse, or aging
relative, and you can get it inpaperback or ebook or audio
book.
Track 1 (52:33):
Oh, fun.
That's wonderful.
Are you reading the audio book
squadcaster-f9ab_2_03-20-2024 (52:40):
I am the reader.
Yes, I did it myself.
I, I had to come around to thatand I'm not like some kind of
radio voice, but I, I, I tooksome auditions and I heard it
just incredible velvet radioguy.
And as soon as I heard him readmy words, I was like, oh, I have
(53:00):
to read this book.
Track 1 (53:02):
Yes, I'm saying yay because I think it could come
through your voice differentlythan anyone else.
You have a very strong mix oflogic and compassion, so I'm
glad you
squadcaster-f9ab_2_03-20-20 (53:13):
Oh, thank you Wow.
Track 1 (53:14):
your own.
Okay.
And your contact information isalso on your website as well.
So Erin, thank you so much forthe time you've given to us
today and the wisdom you'veshared.
The work you do in the world isimportant and, and everyone I
know.
We'll probably be caring forsomeone if they haven't already.
(53:35):
So thank you for sharing thissince everyone, truly everyone
can use it.
Thank you for what you do.
squadcaster-f9ab_2_03-20- (53:42):
Thank you, Becca.
Well, I'm hoping you got asmuch out of that as I did.
I just can't think of anyonebetter equipped to teach us then
Aaron blight.
Takeaways for me would be numberone.
Part of the reason thatcaregiving can be so mentally
(54:03):
frustrating.
Is that the roles change and ourroles that we have with each
other and family systems areloaded with meaning.
So his tips to redefine yourrole, I thought were really
helpful.
Like what it means to be a, forexample, daughter in this role
and being a daughter in thisscenario now includes these
tasks.
(54:23):
Interesting how we need toupdate ourselves.
It can also be really helpful tooutsource the tasks that give
you the greatest distress togive yourself that extra bit of
head space, which helpseverybody.
I also like how we address thefive ways to support a family
caregiver.
So if you know someone who isoffering a lot of family
support, So if you know someonewho is caregiving in a family,
(54:46):
It's so helpful to know how toreach out to them.
First of all, acknowledging whatthey are doing and affirming its
importance.
Allowing them to have thisspace, to have the emotions that
they have and to express themand then ask how you can help.
In meaningful ways and actuallyact on what they say.
And then I also enjoyed.
(55:08):
What he shared about if you arenot the main caregiver.
And how you can extend thedecision-making to the person
you're caring for as much aspossible if that's appropriate
or also what you can do if youare not the main caregiver, but
you're trying to support themain caregiver asking questions,
acknowledging, validating.
And asking how they are.
(55:29):
Again, I think.
most of us will be in thatscenario at one point or another
in our lives.
So I'm so grateful that Erin waswilling to come on.
And teach us how it's done.
For more of his follow-up youcan find all the links to his
book and his website in the shownotes.
Next week is the final episodeof season one.
And I am leaving you with anempowering conversation from a
(55:50):
great guest.
Her name is Holly bridges.
She lives in Western Australia.
And by the end of the episode,you will probably along with me,
just really want to go and visither there.
We can look at the stars bynight and during the day just
geek out on nervous systemintegration.
That is what she does.
So if you've been listening allseason long, you've heard a few
(56:12):
different guests reference.
Stephen Porges has worked onwhat is called the polyvagal
theory.
He put together how our nervoussystem works with safety.
And how so much of our responseslike fight or flight or rest and
digest have to do with safety.
And he also identified otherstates that our nervous system
can be in like freeze or fawn.
(56:35):
He made a very amazing butcomplicated book and theory
about it and she simplified anddistilled it down.
Talking about things as itrelates to autism or PTSD kind
of responses where people mayfreeze or fawn, she simplified
it.
Like someone can do only whenthey really understand it.
(56:57):
You know how a master can saysomething in very few words that
it takes a novice, a lot ofwords to say, that's what I feel
like when I read her book.
So she is the author of reframeyour thinking around autism.
It's a fantastic book, justabout nervous system regulation,
but especially if you areinvolved in the life of anybody
who is on the autistic spectrum.
(57:18):
It's a really great help to helpyou understand.
What is happening in theirworld.
What I noticed though, as itrelates to what's happening in
my world.
And it's relating to what peopletalk about in the world of
trauma.
What people talk about in any ofthe states where we get into
overwhelm and anxiety, it's justour nervous system.
And she explains it really well.
She also created the anxietyreframe technique.
(57:41):
And that is where she works withpeople of all levels of anxiety
or meltdown or shut down.
And helps them come back throughtheir senses.
In a beautiful way to get theirnervous system to balance.
She's an author teacher thoughtleader, keynote speaker, and she
also is developing scientificworks for scientific journals.
(58:01):
I got to read through the latestof hers and it's really good
stuff.
So we are in good hands for thefinal episode next week.
I'm excited to meet you here.
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