February 17, 2021 • 42 mins
When people in our lives experience cognitive changes and dementia, there are abundant transitions for the the loved one experiencing dementia as well as the caregiver. In this honest and real interview with Shoshawna Rainwater, with Rainwater Consulting, we talk about her experience working with families experiencing dementia, but also her personal experience caring for a loved one with dementia.
We discuss:
- What is dementia and what are some of the stages of dementia?
- What are some of the guiding principles to care for someone experiencing dementia to maintain their dignity and humanity?
- How can care givers honor their own transition as they parent their parent with dementia?
You can learn more about Shoshawna's work at https://rainwaterconsultingpdx.com/
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Transcript
Episode Transcript
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(00:00):
Welcome to My Innermission, apodcast conversation about the
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transitions and changes we facein life, and the strategies and
approaches that support us andtaking the next step in our
journey. I'm your host ColleenStanevich. My guest today is
Shoshawna Rainwater. Afterreceiving her master's degree in
social work and earning herclinical licensure, Shoshana has
been practicing as a clinicalsocial worker for large health
organization. For the past sevenyears, she's worked as part of a
(00:26):
palliative care consultationteam that supports people with
chronic and serious healthissues. But during her career,
she's had a deep interest inunderstanding and learning about
dementia, and its impact on theperson living with the
condition. This knowledge hasgrown to include the "other
patient", as Shoshawna calls itin this scenario, the family and
(00:48):
or caregiver who's caring forthe person with dementia. So in
2020, Shoshana created herprivate practice, Rainwater
Consulting, which focuses on theneeds of people living with
dementia and those who careabout them. She lives in
Portland with her spouse,daughter, and a loved one in the
early stage of dementia.
Shoshawna it's such a pleasureto have you on the My
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Innermission podcast, thanks forbeing here.
thank you for having me. I'mreally excited to spend time
with you today.
So there's obviously a lot thatwe're going to talk about with
your work how you support peopleand families with cognitive
changes. But let's start withyou. Can you tell us a bit about
a transition that you'veexperienced in your life that
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has either offered strategies orgiving you insights that have
brought you to where you aretoday?
Great question I actually have.
I have an example here freshfresh in my in my mind about
about my life and where I'm at.
So we will get a little bit moreinto the work that I do. But one
of the one of the things that istrue about me is that I am
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somebody who has long studiedand worked to understand the
landscape of dementia, and theimpact of that on the person
experiencing it, and with thefamily and caregivers that
support them. And a couple ofyears ago, we found ourselves as
a family, beginning to getworried about one of my own
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parents, one of my my parentswas experiencing what seems like
gaps in thinking, but nothing soovert, that that I really knew
we were headed down the pathwayof dementia. So so this is
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involving my mom. And so a fewyears ago, when we started
noticing cognitive changes, likemany of us in this situation, we
didn't want to see that that washappening. And we wanted it to
be anything that that Well,maybe not anything, but it was
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one of the things I did not wantit to be. And I was really
hopeful that it was stressrelated, and maybe depression
and mood related. And that'swhat we could blame some of the
cognitive changes on andparticularly in older adults,
stress and depression can looklike cognitive impairment. And
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so it's one of the reasons it'sreally important to have a good
workup to make sure we're rulingout things that could be more
easily remedied or easilyremedied than dementia is. And
the cognitive changes got morefrequent and more obvious. And
we eventually got to a placewhere ignoring them was not
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serving, I don't think it wasserving my mom or serving us in
terms of being able to reallyunderstand what was going on
with her and make a plan for thefuture. And so we did that, that
brave leap, we took a brave leapthat a lot of families have to
take, which is to seek furtherassessment and diagnosis. And so
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we had an appointment with aneurologist who up until the
outcome and of that appointment,I was still really hopeful that
what we were seeing was mostlymood and stress related. And
then when they did their reallyextensive assessment which which
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takes into account the mood andstress piece and they still came
back with a diagnosis ofcognitive impairment. And it was
that was a life changing moment.
For me, certainly for her, ofcourse, but when someone is
diagnosed with dementia, it hasan impact a life changing impact
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on the rest of the family andthe people who care about that
person. And so there was somerelief and realizing that this
is now what we're dealing with.
With. And while it was not whatI wanted to hear and what anyone
who loves her wanted to hear,and certainly which was not
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something she wanted to hear,once we knew what we were
dealing with, it was both sadand concerning. And also, it
brought a little bit of air intothe room for me around, okay,
this is what we're dealing with.
And now we can get ready forthis particular journey. It's
hard to get ready for a journeyunless you know which journey
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you're on.
And so in going through thatexperience, and thank you for
being so, so open and honest andvulnerable about what that
experience was, in, in thatexperience, what did you learn
about yourself going throughthat that has brought you to
where you are today?
Well, I should, I shouldcontinue on and say the
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learnings really didn't happenback, you know, two years ago
with the diagnosis that was sortof the aha moment. And I think
the learnings have come afterthat. What happened after we
received the diagnosis was sortof this cascade of events that
led us to where we are today,where I'm now sitting with good
learnings that I'll get to in asecond. So about a month after
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we received the diagnosis, wemade a very difficult the
hardest thing I've ever done,including childbirth, a very
difficult decision as my mom'sadult children, there's four of
us. And we made the decisionthat we needed to bring Lin,
take her from that livingsituation. And play sort of with
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my family up in Portland. Andand I'm not kidding when I say
that was the hardest decisionthat we've we've had to make.
And and the hardest thing thatI've ever done, because it was
an acknowledgment to that wewere taking a dyad that had been
together for over 50 years. Andsaying this isn't working enough
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to keep it going for it tocontinue this way. And, and her
ability to continue, I thinkjust living was at stake. We
know that she had been havingsome, some real significant
feelings of that life was notworth living. And so that was to
us the final that tipped us intoour, our new mindset of we need
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to we need to move into aprotective place for her, she's
not able to do that. And it wasreally an unfair ask of my dad.
So my dad's best efforts werenot he was not able to care for
her and she was really failing.
So overnight, this was adecision that my siblings and I
made collectively from differentparts of the Northwest and the
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world. I have a brother whotoggles between local living
locally and living overseas. Andwe made this decision on a
Friday and went down the nextday and had this really life
changing conversation. So a fewhours later, we brought Lynne
back to Portland. And sincethen, since August 10 of 2019.
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She's been living with my familyand I so I have a spouse and a
young daughter. And so that'sthat's really where the learning
and the growth and the ahamoments have come in. So despite
someone who has sort of cerebraleven telling families, what we
think we know about how to copewith this, there is nothing like
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the visceral understanding thatcomes with the lived experience.
And you could say that's truefor you know, it's hard to
connect with people who haven'tgone through something similar,
I should say, nobody understandsyou and the way that somebody
who's going through it or hasgone through it understands you.
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And I think that's true forthings like you know, the death
of a parent or birth of a child,those kinds of things. It's just
a it's an aha experience thatdoes not come until you actually
are living it. So this has beena really interesting because
it's almost going on on twoyears. It's been an interesting
experience, to live side by sidewith somebody who was
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experiencing this disease. AndI'm learning how much patience
and understanding and how muchis being asked of that primary
caregiver and an understandingthat in any way, and how
depleting that experience canbe. Even though there are
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moments of joy and anticipationand connection, lots of moments
of connection. It's harder thanI thought than I thought
possible.
It's so interesting to me toname you named a couple
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different steps of change, Iwould say that then led to this
transition moment but you talkedabout taking the leap of a
diagnosis, where you could put aname to it and say, "Okay, this,
this is what we are dealing withright now, this is what she's
experiencing." And so there's achange moment there of, okay,
there's there's a health change.
But then coupled with that, thechanges that happened with
(10:17):
roles, and you talked aboutboth, you know, your your
parents as a as a union andthinking about is this the right
situation right now for for her,but then also thinking about
taking on the the change ofbecoming a caretaker for your
mom, I just think about thechanges in those roles. And
that's, that is a lot of change,and a lot of transition on a lot
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of different levels, which I canI can imagine is very complex,
and it definitely could take itstoll on an individual.
And, you know, her being here isa life change for her. So she's
adapting in a brain that doesn'tfully allow her to adapt, and
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the way she would have, youknow, 20 or 30 years ago, she's
always been incredibly resilientand adaptive, I would say, that
is probably one of the thingsabout her that I've admired most
is she's very adaptive. And, andso she's adopting. And so we're
the three people that live withher. So she's also impacting,
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you know, the lives of my spouseand the life of my daughter, and
some really great ways in otherways that are challenging,
because of what this diseasewhat, because of what this
disease looks like. It'sconstant reminder that this is
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really hard, gives me a newlevel of empathy, and
understanding for the familiesthat I work with. And also, it's
just a reminder, you know, Ihave a better than average
understanding of what it takesto be in relationship
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successfully with a person withdementia. And I still struggle.
So I can only imagine familieswho have not been given tools,
and who don't have a team, ifit's just one singular
caregiver, trying to do this,how challenging it is. And very
humbling, and I think,ultimately helps me be a better
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clinician, I have the livedexperience. I'm having haven't
had it because it's stillongoing, and I'm having the
lived experience.
Let's talk about that a littlebit. Because you, you know,
you're having this experience inyour home life, your personal
life, and then your work life isall about supporting families
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and individuals who areexperiencing dementia and
cognitive changes, too. So canwe talk a little bit first,
first, what is the work you do?
Like how what does that supportlook like for families and loved
ones who are experiencingcognitive changes?
Yeah. So I will say I wear Iwear two professional hats. I've
been a long time employee of alarge health system. And I work
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as part of a palliative careteam. I partner with either an
MD or a nurse practitioner. Andwe meet with patients who've
been diagnosed with a seriouschronic progressive illness.
And, and we try to meet with thepeople in their life who are
their support system. So when Isay family, I just loosely mean
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the people that matter to themand show up for them. And we try
to identify ways to enhancequality of their, of their lived
experience. So we know thatliving with chronic and serious
ailments is a really big deal.
It's really hard on people andhard on the people who care
about the person with chronicand serious illness. And so my
job on that team, as part ofthat diet is to identify the
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psychosocial the emotionalchallenges that come with having
chronic and serious disease. Andthere's a lot of emotional and
and psychosocial challenges thatcome with that with with every
disease that I can think of. Sothat's one professional hat that
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I wear. And then the other hat.
The other hat that I wear is inthe last year I created a
private practice consultationservice, I would say the name of
it is rainwater consulting, andI work exclusively with patients
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and families who the patienthas, has received a diagnosis of
some sort of dementia, which itmay be worth pausing for a
second and just explainingbecause there seems to be
ongoing challenges andunderstanding what is dementia
and what is Alzheimer's and whatis. So dementia is sort of
you'll see lots of images If youwere to Google dementia images,
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you'll see an umbrella. Andunder the umbrella is the
dementia. So dementia is acondition not actually a
disease. And then withinunderneath that umbrella you
will see different sort of likeraindrops coming down from that
umbrella and it will haveAlzheimer's, vascular Lewy Body
different kinds differentdiseases have dementia. Somebody
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compared it to dementia is, islike car. And then the different
types are, you know, likeToyota, Honda, different
diseases, somebody pointed outthat can also be true for, for
wanting to matches the why. Andthen different diseases are
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European and all that. If youcan hear now, whatever, whatever
is helpful in helping peopleunderstand that and so. So when
I say dementia, what I mean isanyone who has been diagnosed
with a disease under thatdementia umbrella, and helping
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families in particular,understand what it takes to, to
survive. And hopefully, I don'tknow if we can use the word
thrive. But to be able to comethrough on the other end of the
disease experience, notabsolutely depleted by it, and
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not heartbroken by it. And I amsomebody who really believes we
shouldn't make the pain try tomake pain prettier. I like just
naming things for what they are.
But I think there are lots ofways we can make it less bad.
Most of the strategies that workfor dementia are psychosocial in
nature, they're not medicalinterventions, and they're not
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prescriptive or pharmacologicalinterventions. The work is
really we call it skills, notpills, although there are some
cases where pharmacology can becan be helpful. And it shouldn't
be our first go to whensomeone's exhibiting a behavior.
A behavior is a communication.
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And so when you're talking aboutthe skills that you support
people and their families with,are those skills for the
individual themselves who'sreceived that diagnosis? Or are
they for the family or thepeople supporting that person,
or both?
So the work, I will say the workis primarily with the family,
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the caregivers, because and thenthe benefit is, is really for
both for both the caregiver andthe person living with dementia.
But it's it is too much to askof the brain of most people with
dementia to understand what'sgoing on with them and ask them
to do anything differently. Andas such, the work is really on
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the on the side of the personwho is supporting the person
with dementia. And that'sactually the good news. And what
makes it really, really hard.
Because we have hold a lot ofcontrol. As the caregivers, we
set the tone for theinteraction, we have a lot of
influence on how, how the daygoes. And helping keep people
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with dementia out of distress isis a big job. And it's and all
the work is actually on the partof the caregiver.
Yeah, which is why I appreciatedin your bio, that you name that
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idea of the other patient assomeone who who is doing all of
that work. Can you give someexamples of some of the skills
that you help familiesunderstand or practice to
support their loved one?
Yeah, I think there's just acouple of really straightforward
golden rules that we can lean onthat will like instantly make
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your life better as a caregiverfor a person with dementia. And
we'll say the top two are what Ihear people describing as the
number one rule is just neverargue. And which turns out is a
lot easier said than done. Andthat's been a learning in the
last two years. Because eventhough I've understood that
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cognitively there is a part ofme, that wants to continue to
tether my loved one to reality,and to kind of argue my point as
to why I'm right. And it fails100% of the time. And there must
be something about it in themoment. That feels kind of good
for me that as to why I wouldactually do it but it never goes
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well. And so then the number onething that families can stop
doing with their loved one isarguing because We're not going
to get our loved one to see itthe way we see it. The second
thing I think that's reallyhelpful is to help families
understand that realityorientation. So tethering people
to the reality that you and Iexperience as people with with
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well, brains, or neuro normalbrains does not work. And we end
up in a power struggle withpeople, when we try to read to
reorient them to reality. So Iwould say the arguing piece and
the reality orientation pieceare two really big things. And
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we probably, you know, we don'thave time in this podcast to go
into all the nuances as to why,right, but they're, they're
great. And we can talk aboutsome of those resources. There's
great literature out there as towhy those two things aren't
effective and actually make yourloved one feel worse. And then
actually, when they are worse,it actually makes the caregivers
job a lot harder. Yeah. So if wecan't find it in ourselves to do
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it, because we know it's goodfor our loved one with dementia,
we could at least know that, youknow, if I do it this way,
actually, it's going to make myjob easier.
I think one of the other thingsas I understand dementia is that
it's a it's a very sharplearning curve, not only just
understanding the the skillslike those, those two skills are
helpful to think about, but thatthe experience of the person and
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the cognitive decline changesover time, too. So it feels like
a very, it feels like unevenground to stand on, and that you
may master some techniques thatthat worked for a while, and
then you have to adapt. How doyou help people understand how
to look for those changes? Andcan you give a little more
insight into how those changestypically happen? over the over
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the course of this disease?
That's a great question. The waythose changes typically happen,
is, is very difficult topinpoint in terms of timelines.
So there are some really, thereare concrete things that we know
about this disease and how itprogresses. But the big unknown
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is the timeline, when is myloved one going to go from this
kind of early, early stage intomid stage where that's really
the stage where the more of thepsycho behavioral issues come
out. So you can look at theaverages in the literature about
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length of experience, withdementia, from onset to death.
And you can see they're wildlyall over the place. So I think,
you know, you can say, five toeight years on average, which
then you'll see caveats aroundlike it can be anywhere from two
years to 20 years and some typesof dementia, some of those
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raindrops underneath thatumbrella can have a shorter
prognosis, and then some of theothers. So that's another reason
why it can be helpful to have amore definitive diagnosis about
which kind of dementia are wetalking about? Because families
need to know, am I I mean, twoyears and 20 years are both
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marathons in my mind, right. Butif you're asking me to get ready
for a two year experience versusa 20 year experience, so there's
a lot of unknowns. And there arejust functional and behavioral
markers that we see that tell usyeah, I kind of think this
person is no longer in the earlystage, I would describe them now
as being in mid stage. And thenagain, for late stage, which is
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actually a little bit moreevident, because some of the
psycho behavioral symptoms thatwe see often fizzle out. And
what we see is more physicaldependence versus a body that is
anxious and can get up and roamand is a wonder risk and those
kinds of things. So what I tellfamilies is each one of these
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stages, early, mid, and late,all require something different
in terms of approach, andoftentimes setting and the
pitfalls are, are not alwaysevident. And so it's trying to
get ahead and plan for plan forthe next phase and for safety
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concerns that are going to comewith that phase. And you never
know. I mean, I've sat with manyfamilies who have had an
experience with a loved onewandering and getting lost. And
saying I had no idea they wereat that point they had never
done that before. which is youknow, true in every single case
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no one sort of announces to usdementia ever gives us that
heads up that by the way, nextWednesday, I'm actually gonna
have my first wanderingexperience, you should probably
got a bracelet on me or no GPSor something like that. So it's
them. It's very difficult and interms of your question around
how do we know How to adapt tothe next challenge? I would say,
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a good good rule of thumb iswhen do you stop trying what
you've been trying is when it nolonger works. So people with
dementia are a great teachers,they'll tell you, you will know
when something isn't working,because you will see it in their
reaction. And then it's time topivot pretty quickly to a
different approach. And and Ithink you can still hold up the
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never arguing and don't reality,or yet as to guiding stars for
the entire experience.
We're talking a lot about howthe individual changes, I mean,
that my podcast is focused somuch on on personal transitions,
isn't usually the experiencethat the person with dementia
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understands that there there isa transition happening if there
are changes happening to them?
That's a great question. And itbrings up this concept that Judy
Cornish, who is the creator ofthe dawn method, she names this
challenge in a way that I hadnot seen laid out before me and
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helped me really understand thatpeople with changing brains,
there's this concept ofanosognosia. And anosognosia, is
this inability to understand orto know that, that your brain is
changing. And she talks aboutthe levels of varying levels of
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Anna signo Shah, and people withdementia. And I think you can
have sort of waxing and waningawareness, particularly in the
beginning. And I think that somepeople have full anosognosia,
where they are not aware of whatis going on. And those are, in
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my experience some of thetrickiest situations to deal
with. Because as Judy Cornishlays out in her, in her
literature, she she talks aboutthe fact that if you thought
everybody else was messing up,and then blaming you for it,
you'd be really, really angry.
So people with anosognosia, highlevels of insignia tend to be
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angry and frustrated with therest of us. And you'll see that
in their behavioralmanifestations. And then people
with low levels of anosognosia,who may have that awareness,
they tend to present as as moresad, and perhaps ashamed and
worried. And because they havesome awareness that they are
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losing cognitive abilities, andwe really, we really value
intellect and in our culture,and it's a very scary thing to
think that you are losing theability to think for yourself
and have that rational thought.
Yeah, I've long said, I think Ithink that the people who have
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high levels of energy signatureactually tend to be a little bit
happier. Because they don't seethat, that they're the problem.
And, but but it's hell onfamilies, right? to have
somebody who has no awarenessthat is happening. Mm hmm. I
don't know which one I wouldchoose. Yeah, honestly, if I had
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to have higher low levels ofmembership.
So it's really interesting tothink about how how individuals
experiencing dementia would,would potentially respond to
knowing that or not knowing thattheir brain is changing. When we
think about how roles shiftduring this time, and this gets
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back to this idea of the otherpatient. You've talked about
some of the the skills andstrategies that people can
employ in supporting their lovedone, but what are some of the
ways that individuals cansupport themselves if they are
either the the direct caregiverto their loved one or just
trying to support their lovedone through other caregiving
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means, but what are some of thestrategies to if we think of
them as the other patient inthis experience? What are some
of the strategies and skillsthat that you support them with?
This is a great question. I havea lot of thoughts and a lot of
passion around this particularissue because I, I think, in
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healthcare, we are doing areally lousy job of helping
families understand what's goingon, understand what lies ahead
and help them get ready for fora marathon. And I think part of
what I do is basic dementiaeducation for a patient a for a
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patient's family, about whatwe're looking at, and what I
want to emphasize And try toemphasize with families right
off is and with caregivers rightoff is this is not a one person
job This will absolutely deplte you if if you try to do this
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all on your own the jobs justtoo big. And so we've got a real
y great geriatrician within theealth system that I work with
And she has written a book andalks a lot about the the team
approach, and has a great grapic in the book around, let'
list out all of the people invoved in your your loved one with
dementia care. So And oftetimes, there's quite a few spok
(30:36):
s coming out from that circe, you know, you got prim
ry care and specialists and othepeople involved. And then equa
ly, calling up the impotance of having a team for your
elf, meaning your physician knowthat you are the care
iver, primary caregiver for a peson with dementia. and hopi
(30:57):
g that you're your physcian, your own physician unde
stands what that means that thatmeans a huge life change for
ou. And, and then trying to alsofill in the rest of the spok
s on that circle with with teammembers, including a ther
pist, perhaps a behavioral dimesion, behavioral coach, and also
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with built in opportunities forespite from day one. So that
is a very normal practice thatyou start from the very begi
ning when your loved one is,s diagnosed, and not some
hing that you try to insert a cople of years down the road when
things have gotten so stresful. So I like I like talk
(31:42):
ng about the team approach, becase I just I just know from you
now, 20 years of like anecotal evidence plus ever
thing you read, it's so hardto do this work. And it's near
y impossible to do it well, justby yourself. So I want peop
e to give themselves permssion to pull in a team. The
he other tool that's been realy helpful for me is Pauline boss
(32:06):
s work on ambiguous loss. Andauline bosses kind of ever
where, right, and I think sheay have been on, I know, Bern
e brown referenced her the otheday on a podcast. And you know
if Bernie Bernie is refeencing you, you've kind of arri
ed. And I think Pauline bossis sort of the creator of this
idea of ambiguous loss, whicin dementia means that part
(32:30):
cular kind of crazy making aroud the fact that somebody you
ove is physically present, andsychologically absent. And that
that is in and of itself, verydifficult space to be in. And
think her work has sort of gottn highlighted through that pand
mic, because I think a lot of uare experiencing differing degr
(32:53):
es of ambiguous loss and thatthings are just really chal
enging right now. But I, I highy recommend her book loving some
ne who has dementia, it's onef my, my favorite reco
mendations for families, andt's more highlighted than not
ighlighted when I look throgh it. And then I, you know
like any good clinician, I, Ilet people tell me what they
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think would be helpful peope are the experts on them
elves. And helping them realy identify what's going to help
them survive and be able to gethrough this situation. I also
tried to give people permssion to be forgiving of them
elves, if they have to chane course, and start doing thin
(33:35):
s differently with their loveone, or bring in, bring in help
or even having to have a loveone move. And that gets part
cularly tricky. When theyve been promises made. I alwa
s like to tell people, if youan catch them upstream enou
h, it's I'd like to encorage them, you know, plea
e, please promise intent butot outcome. Yeah. And but some
(33:58):
imes a promise has already beenmade years ago about I'll neve
place you. And so working withfamilies around that some
imes it's it's helpful for famiies to be given permission by o
hers about, you know, if younew what you were agreeing to 2
or 30 years ago, if you hadnformed consent, that might that
(34:19):
might look different. It's veryhard to know, especially beca
se we don't talk about it. We dn't talk about this dise
se. We don't talk about whatlies ahead for families. How
o support them, I think it'sreally hard to know what you'
e agreed to.
I also think you talked a lot abut kind of the the self care p
ece for the other patient tthe person caring for the
(34:40):
erson with dementia. But Ialso think there's that ch
nging dynamic again of relatinships to that if I made a pro
ise to a parent, um, you know, wen when they were cognitivel
well, and now that has changeand my role has changed that as
a primary caregiver. I'mlmost more of the Parents lik
it feels more like I am parening in this moment. How do
(35:02):
ou have strategies to hlp people just just recognize
nd reconcile that shift in teir own relationships w
th their parents do? Well, againI'm
a big fan of being able to kindof label the disconnect and
actually name what something is.
And so I do say you're parentingthe parent, which is a really
weird role to be in,particularly if it has been a
(35:26):
role where the parent has held alot of the power wielded power
and influence through thethroughout the adult child's
life. And so, I think, you know,it start by naming your
parenting your parent, and whata strange place that is to be.
And, you know, I think there'salso, it's okay to think about
(35:48):
your loved one, when they werea, you know, a robust 15 year
old, you can still love thatperson and think about that
person, truly as your mom. Andnow this person who you're
living with, or who you're inrelationship with, who has
dementia is kind of a newperson, a new person in your
(36:09):
life. And that's that ambiguoussort of holding both of those
truths that this is both thesame person truly, and also,
it's a very different person.
And that's a that's just aproduct of this particular
condition dimension is that itdoes create changes in
(36:29):
personality.
Thank you for those resourcesand guidance there too. Do you
have other resources that youwould recommend to folks as if
they're beginning to askquestions, if they're if their
loved ones experiencingdementia? Or if they recognize
they are? They are on the pathor on the spectrum of dementia,
but they are looking forsupport? Are there resources you
(36:51):
would recommend?
Yeah, so we talked a little bitabout Judy Cornish, his work. So
she and her work is relativelynew on my radar within the last
several months. And it's thebest stuff that I've seen in a
very long time. And all of thiswork, I would highly recommend
Pauline bosses work and I loveteepa Snow's work, she has a
(37:14):
plethora of online resources.
And she's an occupationaltherapist, by training has
really great practical tips andtools for families about how to
provide care for people whodon't want the care provided to
them. And that's often I think,where the, you know, the rubber
hits the road for families. Andwhere it's really challenging is
(37:35):
they're doing so much of thehands on delivery of those
activities of daily living withthe bathing and the dressing and
the grooming. And there aregreat books out there great tips
around how to make that easierfor both of you. And then
another set of books that Ireally like are two books from
(37:55):
cafe Lauren Hugh, one isAlzheimer's, basic caregiving.
And the other is activities ofdaily living. This would be my
my top recommendations at thistime.
And is there anything else thatwe haven't touched on that you'd
want to share with people whoare in this moment of transition
(38:16):
with themselves or people thatthey love?
In anticipation of joining thistoday's podcast today? I am not
a traditionally religiousperson, but I threw out a
request to the universe aroundlike what would be helpful. And
what I actually got back wassomething from people with
(38:39):
dementia who have who have diedand gone on. This was what came
back to me from the universe,which was please remember our
personhood and that can bereally hard to do. And I think
it's probably the most criticalwork we do. And caring for a
loved one with dementia ishelping them feel safe and
(39:03):
secure and soothed and likethings don't matter. And, you
know, growing older is such aninteresting longitudinal
experiment because I, I wentinto work working with elders,
because I think, because I hadthe best experience as a child
with elders. They were my sourceof safety and security. I didn't
(39:28):
I never felt more secure than Idid when I was in the presence
of my grandparents. And I lovedthat. But to me, even though
there were pictures around thehouse that indicated they had
once been in the body of a youngperson, I really didn't believe
it. And this is the interestingthing about getting older is
that you like not everybodywho's older has always been
(39:50):
older. And I still I'm not evensure if I still believe it like
but the older you get, you'relike no, no, no I think yeah,
that's that's got to be true.
And and yeah, the truth is we dochange. And I remember watching.
Remember the movie What's EatingGilbert Grape? Mm hmm. years
(40:13):
ago, there was this beautifulexchange, I thought between the
mother who was a person with Ithink she would probably meet
the clinical criteria for morbidobesity, she was a large one
that was a big part of thenarrative of the story. And she
meets Juliette Lewis, who hisgirlfriend's one of the
(40:36):
characters for the first time.
And with some sort of shame andembarrassment, she says to
Juliette Lewis, you know, Ihaven't always looked like this.
And Juliette Lewis, looked ather with kindness and a little
bit of surprise, and said, Well,you know, I haven't always
(40:57):
looked like this. I just alwaysloved that. And the truth is, we
don't you know, we are in thesebodies that evolve and change.
And, you know, I, as you know, aperson who has a parent with
with dementia, I worry that it'salso my genetic destiny. I think
a lot of us worry whether wehave it in our genes or not, we
(41:22):
worry about this disease and andso if our guiding star can be
elevating and holding uppeople's personhood, no matter,
no matter how we evolve as wegrow older, that's what I would
want for myself.
That's beautiful, that idea of,of dignity and humanity as we
(41:42):
change. I love that Shoshanalast question if people want to
know more about your work, andespecially your consulting work
with folks, what's the best wayto learn more about what you do
and how you help others.
So folks can find me easily viathe internet. And my website is
www.rainwaterconsult ngpdx.comAnd I will link that into the
(42:05):
show notes so people can find itas well.Thank you so much for
your time today and your insightand just the human being that
you are. I appreciate it.
Colleen, Thank you. Thank you fosharing in the way that you d
and making space for for peoplto share. Much appreciated
(42:28):
You're welcome. And thanks forlistening to My Innermission
odcast. If you want to learnore about Shoshana his
nterview with me or see some ofhe resources that she discussed
n the interview, head over toy intermission.com where
here's an article that featureshis interview transcript as
ell as all the resources weiscussed. While you're there,
e sure to subscribe so you canet the latest updates on the
(42:50):
odcast and other products.
hanks for listening.
Welcome to My Innermission, apodcast conversation about the
(00:03):
transitions and changes we facein life, and the strategies and
approaches that support us andtaking the next step in our
journey. I'm your host ColleenStanevich. My guest today is
Shoshawna Rainwater. Afterreceiving her master's degree in
social work and earning herclinical licensure, Shoshana has
been practicing as a clinicalsocial worker for large health
organization. For the past sevenyears, she's worked as part of a
(00:26):
palliative care consultationteam that supports people with
chronic and serious healthissues. But during her career,
she's had a deep interest inunderstanding and learning about
dementia, and its impact on theperson living with the
condition. This knowledge hasgrown to include the "other
patient", as Shoshawna calls itin this scenario, the family and
(00:48):
or caregiver who's caring forthe person with dementia. So in
2020, Shoshana created herprivate practice, Rainwater
Consulting, which focuses on theneeds of people living with
dementia and those who careabout them. She lives in
Portland with her spouse,daughter, and a loved one in the
early stage of dementia.
Shoshawna it's such a pleasureto have you on the My
(01:09):
Innermission podcast, thanks forbeing here.
thank you for having me. I'mreally excited to spend time
with you today.
So there's obviously a lot thatwe're going to talk about with
your work how you support peopleand families with cognitive
changes. But let's start withyou. Can you tell us a bit about
a transition that you'veexperienced in your life that
(01:31):
has either offered strategies orgiving you insights that have
brought you to where you aretoday?
Great question I actually have.
I have an example here freshfresh in my in my mind about
about my life and where I'm at.
So we will get a little bit moreinto the work that I do. But one
of the one of the things that istrue about me is that I am
(01:54):
somebody who has long studiedand worked to understand the
landscape of dementia, and theimpact of that on the person
experiencing it, and with thefamily and caregivers that
support them. And a couple ofyears ago, we found ourselves as
a family, beginning to getworried about one of my own
(02:14):
parents, one of my my parentswas experiencing what seems like
gaps in thinking, but nothing soovert, that that I really knew
we were headed down the pathwayof dementia. So so this is
(02:35):
involving my mom. And so a fewyears ago, when we started
noticing cognitive changes, likemany of us in this situation, we
didn't want to see that that washappening. And we wanted it to
be anything that that Well,maybe not anything, but it was
(02:55):
one of the things I did not wantit to be. And I was really
hopeful that it was stressrelated, and maybe depression
and mood related. And that'swhat we could blame some of the
cognitive changes on andparticularly in older adults,
stress and depression can looklike cognitive impairment. And
(03:16):
so it's one of the reasons it'sreally important to have a good
workup to make sure we're rulingout things that could be more
easily remedied or easilyremedied than dementia is. And
the cognitive changes got morefrequent and more obvious. And
we eventually got to a placewhere ignoring them was not
(03:41):
serving, I don't think it wasserving my mom or serving us in
terms of being able to reallyunderstand what was going on
with her and make a plan for thefuture. And so we did that, that
brave leap, we took a brave leapthat a lot of families have to
take, which is to seek furtherassessment and diagnosis. And so
(04:02):
we had an appointment with aneurologist who up until the
outcome and of that appointment,I was still really hopeful that
what we were seeing was mostlymood and stress related. And
then when they did their reallyextensive assessment which which
(04:24):
takes into account the mood andstress piece and they still came
back with a diagnosis ofcognitive impairment. And it was
that was a life changing moment.
For me, certainly for her, ofcourse, but when someone is
diagnosed with dementia, it hasan impact a life changing impact
(04:48):
on the rest of the family andthe people who care about that
person. And so there was somerelief and realizing that this
is now what we're dealing with.
With. And while it was not whatI wanted to hear and what anyone
who loves her wanted to hear,and certainly which was not
(05:09):
something she wanted to hear,once we knew what we were
dealing with, it was both sadand concerning. And also, it
brought a little bit of air intothe room for me around, okay,
this is what we're dealing with.
And now we can get ready forthis particular journey. It's
hard to get ready for a journeyunless you know which journey
(05:30):
you're on.
And so in going through thatexperience, and thank you for
being so, so open and honest andvulnerable about what that
experience was, in, in thatexperience, what did you learn
about yourself going throughthat that has brought you to
where you are today?
Well, I should, I shouldcontinue on and say the
(05:51):
learnings really didn't happenback, you know, two years ago
with the diagnosis that was sortof the aha moment. And I think
the learnings have come afterthat. What happened after we
received the diagnosis was sortof this cascade of events that
led us to where we are today,where I'm now sitting with good
learnings that I'll get to in asecond. So about a month after
(06:13):
we received the diagnosis, wemade a very difficult the
hardest thing I've ever done,including childbirth, a very
difficult decision as my mom'sadult children, there's four of
us. And we made the decisionthat we needed to bring Lin,
take her from that livingsituation. And play sort of with
(06:33):
my family up in Portland. Andand I'm not kidding when I say
that was the hardest decisionthat we've we've had to make.
And and the hardest thing thatI've ever done, because it was
an acknowledgment to that wewere taking a dyad that had been
together for over 50 years. Andsaying this isn't working enough
(06:57):
to keep it going for it tocontinue this way. And, and her
ability to continue, I thinkjust living was at stake. We
know that she had been havingsome, some real significant
feelings of that life was notworth living. And so that was to
us the final that tipped us intoour, our new mindset of we need
(07:19):
to we need to move into aprotective place for her, she's
not able to do that. And it wasreally an unfair ask of my dad.
So my dad's best efforts werenot he was not able to care for
her and she was really failing.
So overnight, this was adecision that my siblings and I
made collectively from differentparts of the Northwest and the
(07:40):
world. I have a brother whotoggles between local living
locally and living overseas. Andwe made this decision on a
Friday and went down the nextday and had this really life
changing conversation. So a fewhours later, we brought Lynne
back to Portland. And sincethen, since August 10 of 2019.
(08:03):
She's been living with my familyand I so I have a spouse and a
young daughter. And so that'sthat's really where the learning
and the growth and the ahamoments have come in. So despite
someone who has sort of cerebraleven telling families, what we
think we know about how to copewith this, there is nothing like
(08:24):
the visceral understanding thatcomes with the lived experience.
And you could say that's truefor you know, it's hard to
connect with people who haven'tgone through something similar,
I should say, nobody understandsyou and the way that somebody
who's going through it or hasgone through it understands you.
(08:45):
And I think that's true forthings like you know, the death
of a parent or birth of a child,those kinds of things. It's just
a it's an aha experience thatdoes not come until you actually
are living it. So this has beena really interesting because
it's almost going on on twoyears. It's been an interesting
experience, to live side by sidewith somebody who was
(09:10):
experiencing this disease. AndI'm learning how much patience
and understanding and how muchis being asked of that primary
caregiver and an understandingthat in any way, and how
depleting that experience canbe. Even though there are
(09:33):
moments of joy and anticipationand connection, lots of moments
of connection. It's harder thanI thought than I thought
possible.
It's so interesting to me toname you named a couple
(09:54):
different steps of change, Iwould say that then led to this
transition moment but you talkedabout taking the leap of a
diagnosis, where you could put aname to it and say, "Okay, this,
this is what we are dealing withright now, this is what she's
experiencing." And so there's achange moment there of, okay,
there's there's a health change.
But then coupled with that, thechanges that happened with
(10:17):
roles, and you talked aboutboth, you know, your your
parents as a as a union andthinking about is this the right
situation right now for for her,but then also thinking about
taking on the the change ofbecoming a caretaker for your
mom, I just think about thechanges in those roles. And
that's, that is a lot of change,and a lot of transition on a lot
(10:38):
of different levels, which I canI can imagine is very complex,
and it definitely could take itstoll on an individual.
And, you know, her being here isa life change for her. So she's
adapting in a brain that doesn'tfully allow her to adapt, and
(10:59):
the way she would have, youknow, 20 or 30 years ago, she's
always been incredibly resilientand adaptive, I would say, that
is probably one of the thingsabout her that I've admired most
is she's very adaptive. And, andso she's adopting. And so we're
the three people that live withher. So she's also impacting,
(11:21):
you know, the lives of my spouseand the life of my daughter, and
some really great ways in otherways that are challenging,
because of what this diseasewhat, because of what this
disease looks like. It'sconstant reminder that this is
(11:43):
really hard, gives me a newlevel of empathy, and
understanding for the familiesthat I work with. And also, it's
just a reminder, you know, Ihave a better than average
understanding of what it takesto be in relationship
(12:03):
successfully with a person withdementia. And I still struggle.
So I can only imagine familieswho have not been given tools,
and who don't have a team, ifit's just one singular
caregiver, trying to do this,how challenging it is. And very
humbling, and I think,ultimately helps me be a better
(12:24):
clinician, I have the livedexperience. I'm having haven't
had it because it's stillongoing, and I'm having the
lived experience.
Let's talk about that a littlebit. Because you, you know,
you're having this experience inyour home life, your personal
life, and then your work life isall about supporting families
(12:47):
and individuals who areexperiencing dementia and
cognitive changes, too. So canwe talk a little bit first,
first, what is the work you do?
Like how what does that supportlook like for families and loved
ones who are experiencingcognitive changes?
Yeah. So I will say I wear Iwear two professional hats. I've
been a long time employee of alarge health system. And I work
(13:11):
as part of a palliative careteam. I partner with either an
MD or a nurse practitioner. Andwe meet with patients who've
been diagnosed with a seriouschronic progressive illness.
And, and we try to meet with thepeople in their life who are
their support system. So when Isay family, I just loosely mean
(13:31):
the people that matter to themand show up for them. And we try
to identify ways to enhancequality of their, of their lived
experience. So we know thatliving with chronic and serious
ailments is a really big deal.
It's really hard on people andhard on the people who care
about the person with chronicand serious illness. And so my
job on that team, as part ofthat diet is to identify the
(13:56):
psychosocial the emotionalchallenges that come with having
chronic and serious disease. Andthere's a lot of emotional and
and psychosocial challenges thatcome with that with with every
disease that I can think of. Sothat's one professional hat that
(14:16):
I wear. And then the other hat.
The other hat that I wear is inthe last year I created a
private practice consultationservice, I would say the name of
it is rainwater consulting, andI work exclusively with patients
(14:40):
and families who the patienthas, has received a diagnosis of
some sort of dementia, which itmay be worth pausing for a
second and just explainingbecause there seems to be
ongoing challenges andunderstanding what is dementia
and what is Alzheimer's and whatis. So dementia is sort of
you'll see lots of images If youwere to Google dementia images,
(15:03):
you'll see an umbrella. Andunder the umbrella is the
dementia. So dementia is acondition not actually a
disease. And then withinunderneath that umbrella you
will see different sort of likeraindrops coming down from that
umbrella and it will haveAlzheimer's, vascular Lewy Body
different kinds differentdiseases have dementia. Somebody
(15:27):
compared it to dementia is, islike car. And then the different
types are, you know, likeToyota, Honda, different
diseases, somebody pointed outthat can also be true for, for
wanting to matches the why. Andthen different diseases are
(15:48):
European and all that. If youcan hear now, whatever, whatever
is helpful in helping peopleunderstand that and so. So when
I say dementia, what I mean isanyone who has been diagnosed
with a disease under thatdementia umbrella, and helping
(16:09):
families in particular,understand what it takes to, to
survive. And hopefully, I don'tknow if we can use the word
thrive. But to be able to comethrough on the other end of the
disease experience, notabsolutely depleted by it, and
(16:32):
not heartbroken by it. And I amsomebody who really believes we
shouldn't make the pain try tomake pain prettier. I like just
naming things for what they are.
But I think there are lots ofways we can make it less bad.
Most of the strategies that workfor dementia are psychosocial in
nature, they're not medicalinterventions, and they're not
(16:55):
prescriptive or pharmacologicalinterventions. The work is
really we call it skills, notpills, although there are some
cases where pharmacology can becan be helpful. And it shouldn't
be our first go to whensomeone's exhibiting a behavior.
A behavior is a communication.
(17:19):
And so when you're talking aboutthe skills that you support
people and their families with,are those skills for the
individual themselves who'sreceived that diagnosis? Or are
they for the family or thepeople supporting that person,
or both?
So the work, I will say the workis primarily with the family,
(17:40):
the caregivers, because and thenthe benefit is, is really for
both for both the caregiver andthe person living with dementia.
But it's it is too much to askof the brain of most people with
dementia to understand what'sgoing on with them and ask them
to do anything differently. Andas such, the work is really on
(18:05):
the on the side of the personwho is supporting the person
with dementia. And that'sactually the good news. And what
makes it really, really hard.
Because we have hold a lot ofcontrol. As the caregivers, we
set the tone for theinteraction, we have a lot of
influence on how, how the daygoes. And helping keep people
(18:26):
with dementia out of distress isis a big job. And it's and all
the work is actually on the partof the caregiver.
Yeah, which is why I appreciatedin your bio, that you name that
(18:47):
idea of the other patient assomeone who who is doing all of
that work. Can you give someexamples of some of the skills
that you help familiesunderstand or practice to
support their loved one?
Yeah, I think there's just acouple of really straightforward
golden rules that we can lean onthat will like instantly make
(19:09):
your life better as a caregiverfor a person with dementia. And
we'll say the top two are what Ihear people describing as the
number one rule is just neverargue. And which turns out is a
lot easier said than done. Andthat's been a learning in the
last two years. Because eventhough I've understood that
(19:30):
cognitively there is a part ofme, that wants to continue to
tether my loved one to reality,and to kind of argue my point as
to why I'm right. And it fails100% of the time. And there must
be something about it in themoment. That feels kind of good
for me that as to why I wouldactually do it but it never goes
(19:52):
well. And so then the number onething that families can stop
doing with their loved one isarguing because We're not going
to get our loved one to see itthe way we see it. The second
thing I think that's reallyhelpful is to help families
understand that realityorientation. So tethering people
to the reality that you and Iexperience as people with with
(20:15):
well, brains, or neuro normalbrains does not work. And we end
up in a power struggle withpeople, when we try to read to
reorient them to reality. So Iwould say the arguing piece and
the reality orientation pieceare two really big things. And
(20:36):
we probably, you know, we don'thave time in this podcast to go
into all the nuances as to why,right, but they're, they're
great. And we can talk aboutsome of those resources. There's
great literature out there as towhy those two things aren't
effective and actually make yourloved one feel worse. And then
actually, when they are worse,it actually makes the caregivers
job a lot harder. Yeah. So if wecan't find it in ourselves to do
(20:57):
it, because we know it's goodfor our loved one with dementia,
we could at least know that, youknow, if I do it this way,
actually, it's going to make myjob easier.
I think one of the other thingsas I understand dementia is that
it's a it's a very sharplearning curve, not only just
understanding the the skillslike those, those two skills are
helpful to think about, but thatthe experience of the person and
(21:21):
the cognitive decline changesover time, too. So it feels like
a very, it feels like unevenground to stand on, and that you
may master some techniques thatthat worked for a while, and
then you have to adapt. How doyou help people understand how
to look for those changes? Andcan you give a little more
insight into how those changestypically happen? over the over
(21:42):
the course of this disease?
That's a great question. The waythose changes typically happen,
is, is very difficult topinpoint in terms of timelines.
So there are some really, thereare concrete things that we know
about this disease and how itprogresses. But the big unknown
(22:04):
is the timeline, when is myloved one going to go from this
kind of early, early stage intomid stage where that's really
the stage where the more of thepsycho behavioral issues come
out. So you can look at theaverages in the literature about
(22:26):
length of experience, withdementia, from onset to death.
And you can see they're wildlyall over the place. So I think,
you know, you can say, five toeight years on average, which
then you'll see caveats aroundlike it can be anywhere from two
years to 20 years and some typesof dementia, some of those
(22:47):
raindrops underneath thatumbrella can have a shorter
prognosis, and then some of theothers. So that's another reason
why it can be helpful to have amore definitive diagnosis about
which kind of dementia are wetalking about? Because families
need to know, am I I mean, twoyears and 20 years are both
(23:08):
marathons in my mind, right. Butif you're asking me to get ready
for a two year experience versusa 20 year experience, so there's
a lot of unknowns. And there arejust functional and behavioral
markers that we see that tell usyeah, I kind of think this
person is no longer in the earlystage, I would describe them now
as being in mid stage. And thenagain, for late stage, which is
(23:34):
actually a little bit moreevident, because some of the
psycho behavioral symptoms thatwe see often fizzle out. And
what we see is more physicaldependence versus a body that is
anxious and can get up and roamand is a wonder risk and those
kinds of things. So what I tellfamilies is each one of these
(23:55):
stages, early, mid, and late,all require something different
in terms of approach, andoftentimes setting and the
pitfalls are, are not alwaysevident. And so it's trying to
get ahead and plan for plan forthe next phase and for safety
(24:17):
concerns that are going to comewith that phase. And you never
know. I mean, I've sat with manyfamilies who have had an
experience with a loved onewandering and getting lost. And
saying I had no idea they wereat that point they had never
done that before. which is youknow, true in every single case
(24:40):
no one sort of announces to usdementia ever gives us that
heads up that by the way, nextWednesday, I'm actually gonna
have my first wanderingexperience, you should probably
got a bracelet on me or no GPSor something like that. So it's
them. It's very difficult and interms of your question around
how do we know How to adapt tothe next challenge? I would say,
(25:04):
a good good rule of thumb iswhen do you stop trying what
you've been trying is when it nolonger works. So people with
dementia are a great teachers,they'll tell you, you will know
when something isn't working,because you will see it in their
reaction. And then it's time topivot pretty quickly to a
different approach. And and Ithink you can still hold up the
(25:27):
never arguing and don't reality,or yet as to guiding stars for
the entire experience.
We're talking a lot about howthe individual changes, I mean,
that my podcast is focused somuch on on personal transitions,
isn't usually the experiencethat the person with dementia
(25:48):
understands that there there isa transition happening if there
are changes happening to them?
That's a great question. And itbrings up this concept that Judy
Cornish, who is the creator ofthe dawn method, she names this
challenge in a way that I hadnot seen laid out before me and
(26:09):
helped me really understand thatpeople with changing brains,
there's this concept ofanosognosia. And anosognosia, is
this inability to understand orto know that, that your brain is
changing. And she talks aboutthe levels of varying levels of
(26:30):
Anna signo Shah, and people withdementia. And I think you can
have sort of waxing and waningawareness, particularly in the
beginning. And I think that somepeople have full anosognosia,
where they are not aware of whatis going on. And those are, in
(26:53):
my experience some of thetrickiest situations to deal
with. Because as Judy Cornishlays out in her, in her
literature, she she talks aboutthe fact that if you thought
everybody else was messing up,and then blaming you for it,
you'd be really, really angry.
So people with anosognosia, highlevels of insignia tend to be
(27:16):
angry and frustrated with therest of us. And you'll see that
in their behavioralmanifestations. And then people
with low levels of anosognosia,who may have that awareness,
they tend to present as as moresad, and perhaps ashamed and
worried. And because they havesome awareness that they are
(27:43):
losing cognitive abilities, andwe really, we really value
intellect and in our culture,and it's a very scary thing to
think that you are losing theability to think for yourself
and have that rational thought.
Yeah, I've long said, I think Ithink that the people who have
(28:06):
high levels of energy signatureactually tend to be a little bit
happier. Because they don't seethat, that they're the problem.
And, but but it's hell onfamilies, right? to have
somebody who has no awarenessthat is happening. Mm hmm. I
don't know which one I wouldchoose. Yeah, honestly, if I had
(28:26):
to have higher low levels ofmembership.
So it's really interesting tothink about how how individuals
experiencing dementia would,would potentially respond to
knowing that or not knowing thattheir brain is changing. When we
think about how roles shiftduring this time, and this gets
(28:46):
back to this idea of the otherpatient. You've talked about
some of the the skills andstrategies that people can
employ in supporting their lovedone, but what are some of the
ways that individuals cansupport themselves if they are
either the the direct caregiverto their loved one or just
trying to support their lovedone through other caregiving
(29:06):
means, but what are some of thestrategies to if we think of
them as the other patient inthis experience? What are some
of the strategies and skillsthat that you support them with?
This is a great question. I havea lot of thoughts and a lot of
passion around this particularissue because I, I think, in
(29:28):
healthcare, we are doing areally lousy job of helping
families understand what's goingon, understand what lies ahead
and help them get ready for fora marathon. And I think part of
what I do is basic dementiaeducation for a patient a for a
(29:52):
patient's family, about whatwe're looking at, and what I
want to emphasize And try toemphasize with families right
off is and with caregivers rightoff is this is not a one person
job This will absolutely deplte you if if you try to do this
(30:13):
all on your own the jobs justtoo big. And so we've got a real
y great geriatrician within theealth system that I work with
And she has written a book andalks a lot about the the team
approach, and has a great grapic in the book around, let'
list out all of the people invoved in your your loved one with
dementia care. So And oftetimes, there's quite a few spok
(30:36):
s coming out from that circe, you know, you got prim
ry care and specialists and othepeople involved. And then equa
ly, calling up the impotance of having a team for your
elf, meaning your physician knowthat you are the care
iver, primary caregiver for a peson with dementia. and hopi
(30:57):
g that you're your physcian, your own physician unde
stands what that means that thatmeans a huge life change for
ou. And, and then trying to alsofill in the rest of the spok
s on that circle with with teammembers, including a ther
pist, perhaps a behavioral dimesion, behavioral coach, and also
(31:22):
with built in opportunities forespite from day one. So that
is a very normal practice thatyou start from the very begi
ning when your loved one is,s diagnosed, and not some
hing that you try to insert a cople of years down the road when
things have gotten so stresful. So I like I like talk
(31:42):
ng about the team approach, becase I just I just know from you
now, 20 years of like anecotal evidence plus ever
thing you read, it's so hardto do this work. And it's near
y impossible to do it well, justby yourself. So I want peop
e to give themselves permssion to pull in a team. The
he other tool that's been realy helpful for me is Pauline boss
(32:06):
s work on ambiguous loss. Andauline bosses kind of ever
where, right, and I think sheay have been on, I know, Bern
e brown referenced her the otheday on a podcast. And you know
if Bernie Bernie is refeencing you, you've kind of arri
ed. And I think Pauline bossis sort of the creator of this
idea of ambiguous loss, whicin dementia means that part
(32:30):
cular kind of crazy making aroud the fact that somebody you
ove is physically present, andsychologically absent. And that
that is in and of itself, verydifficult space to be in. And
think her work has sort of gottn highlighted through that pand
mic, because I think a lot of uare experiencing differing degr
(32:53):
es of ambiguous loss and thatthings are just really chal
enging right now. But I, I highy recommend her book loving some
ne who has dementia, it's onef my, my favorite reco
mendations for families, andt's more highlighted than not
ighlighted when I look throgh it. And then I, you know
like any good clinician, I, Ilet people tell me what they
(33:14):
think would be helpful peope are the experts on them
elves. And helping them realy identify what's going to help
them survive and be able to gethrough this situation. I also
tried to give people permssion to be forgiving of them
elves, if they have to chane course, and start doing thin
(33:35):
s differently with their loveone, or bring in, bring in help
or even having to have a loveone move. And that gets part
cularly tricky. When theyve been promises made. I alwa
s like to tell people, if youan catch them upstream enou
h, it's I'd like to encorage them, you know, plea
e, please promise intent butot outcome. Yeah. And but some
(33:58):
imes a promise has already beenmade years ago about I'll neve
place you. And so working withfamilies around that some
imes it's it's helpful for famiies to be given permission by o
hers about, you know, if younew what you were agreeing to 2
or 30 years ago, if you hadnformed consent, that might that
(34:19):
might look different. It's veryhard to know, especially beca
se we don't talk about it. We dn't talk about this dise
se. We don't talk about whatlies ahead for families. How
o support them, I think it'sreally hard to know what you'
e agreed to.
I also think you talked a lot abut kind of the the self care p
ece for the other patient tthe person caring for the
(34:40):
erson with dementia. But Ialso think there's that ch
nging dynamic again of relatinships to that if I made a pro
ise to a parent, um, you know, wen when they were cognitivel
well, and now that has changeand my role has changed that as
a primary caregiver. I'mlmost more of the Parents lik
it feels more like I am parening in this moment. How do
(35:02):
ou have strategies to hlp people just just recognize
nd reconcile that shift in teir own relationships w
th their parents do? Well, againI'm
a big fan of being able to kindof label the disconnect and
actually name what something is.
And so I do say you're parentingthe parent, which is a really
weird role to be in,particularly if it has been a
(35:26):
role where the parent has held alot of the power wielded power
and influence through thethroughout the adult child's
life. And so, I think, you know,it start by naming your
parenting your parent, and whata strange place that is to be.
And, you know, I think there'salso, it's okay to think about
(35:48):
your loved one, when they werea, you know, a robust 15 year
old, you can still love thatperson and think about that
person, truly as your mom. Andnow this person who you're
living with, or who you're inrelationship with, who has
dementia is kind of a newperson, a new person in your
(36:09):
life. And that's that ambiguoussort of holding both of those
truths that this is both thesame person truly, and also,
it's a very different person.
And that's a that's just aproduct of this particular
condition dimension is that itdoes create changes in
(36:29):
personality.
Thank you for those resourcesand guidance there too. Do you
have other resources that youwould recommend to folks as if
they're beginning to askquestions, if they're if their
loved ones experiencingdementia? Or if they recognize
they are? They are on the pathor on the spectrum of dementia,
but they are looking forsupport? Are there resources you
(36:51):
would recommend?
Yeah, so we talked a little bitabout Judy Cornish, his work. So
she and her work is relativelynew on my radar within the last
several months. And it's thebest stuff that I've seen in a
very long time. And all of thiswork, I would highly recommend
Pauline bosses work and I loveteepa Snow's work, she has a
(37:14):
plethora of online resources.
And she's an occupationaltherapist, by training has
really great practical tips andtools for families about how to
provide care for people whodon't want the care provided to
them. And that's often I think,where the, you know, the rubber
hits the road for families. Andwhere it's really challenging is
(37:35):
they're doing so much of thehands on delivery of those
activities of daily living withthe bathing and the dressing and
the grooming. And there aregreat books out there great tips
around how to make that easierfor both of you. And then
another set of books that Ireally like are two books from
(37:55):
cafe Lauren Hugh, one isAlzheimer's, basic caregiving.
And the other is activities ofdaily living. This would be my
my top recommendations at thistime.
And is there anything else thatwe haven't touched on that you'd
want to share with people whoare in this moment of transition
(38:16):
with themselves or people thatthey love?
In anticipation of joining thistoday's podcast today? I am not
a traditionally religiousperson, but I threw out a
request to the universe aroundlike what would be helpful. And
what I actually got back wassomething from people with
(38:39):
dementia who have who have diedand gone on. This was what came
back to me from the universe,which was please remember our
personhood and that can bereally hard to do. And I think
it's probably the most criticalwork we do. And caring for a
loved one with dementia ishelping them feel safe and
(39:03):
secure and soothed and likethings don't matter. And, you
know, growing older is such aninteresting longitudinal
experiment because I, I wentinto work working with elders,
because I think, because I hadthe best experience as a child
with elders. They were my sourceof safety and security. I didn't
(39:28):
I never felt more secure than Idid when I was in the presence
of my grandparents. And I lovedthat. But to me, even though
there were pictures around thehouse that indicated they had
once been in the body of a youngperson, I really didn't believe
it. And this is the interestingthing about getting older is
that you like not everybodywho's older has always been
(39:50):
older. And I still I'm not evensure if I still believe it like
but the older you get, you'relike no, no, no I think yeah,
that's that's got to be true.
And and yeah, the truth is we dochange. And I remember watching.
Remember the movie What's EatingGilbert Grape? Mm hmm. years
(40:13):
ago, there was this beautifulexchange, I thought between the
mother who was a person with Ithink she would probably meet
the clinical criteria for morbidobesity, she was a large one
that was a big part of thenarrative of the story. And she
meets Juliette Lewis, who hisgirlfriend's one of the
(40:36):
characters for the first time.
And with some sort of shame andembarrassment, she says to
Juliette Lewis, you know, Ihaven't always looked like this.
And Juliette Lewis, looked ather with kindness and a little
bit of surprise, and said, Well,you know, I haven't always
(40:57):
looked like this. I just alwaysloved that. And the truth is, we
don't you know, we are in thesebodies that evolve and change.
And, you know, I, as you know, aperson who has a parent with
with dementia, I worry that it'salso my genetic destiny. I think
a lot of us worry whether wehave it in our genes or not, we
(41:22):
worry about this disease and andso if our guiding star can be
elevating and holding uppeople's personhood, no matter,
no matter how we evolve as wegrow older, that's what I would
want for myself.
That's beautiful, that idea of,of dignity and humanity as we
(41:42):
change. I love that Shoshanalast question if people want to
know more about your work, andespecially your consulting work
with folks, what's the best wayto learn more about what you do
and how you help others.
So folks can find me easily viathe internet. And my website is
www.rainwaterconsult ngpdx.comAnd I will link that into the
(42:05):
show notes so people can find itas well.Thank you so much for
your time today and your insightand just the human being that
you are. I appreciate it.
Colleen, Thank you. Thank you fosharing in the way that you d
and making space for for peoplto share. Much appreciated
(42:28):
You're welcome. And thanks forlistening to My Innermission
odcast. If you want to learnore about Shoshana his
nterview with me or see some ofhe resources that she discussed
n the interview, head over toy intermission.com where
here's an article that featureshis interview transcript as
ell as all the resources weiscussed. While you're there,
e sure to subscribe so you canet the latest updates on the
(42:50):
odcast and other products.
hanks for listening.
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