June 26, 2024 • 41 mins
Can you become Co-Dependent on the Caregiving Role? What's that about?
In this episode of 'Doing It Best with Eldercare Success,' host Nancy May addresses the profound challenges and emotional journey faced by those caring for multiple elderly family members and what happens when our “job” in caring for them is over. Have you identified so much with being a caregiver that you become stuck in knowing who you really are? How do you move forward? How do you get the right support from friends and family? When is their support detrimental to your own well-being?
Nancy’s guest in this episode is Joined by Dr. Evan Plys, a PhD a board certified geropsychologist and professor at Harvard Medical School. Listen in as Dr. Plys and Nancy delve into the impact of caregiving on personal identity and emotional well-being.
Their discussion covers the struggle with accepting the term 'caregiver,' redefining roles beyond caregiving, and managing the emotional highs and lows associated with long-term caregiving. They also provide practical strategies for dealing with grief and transitioning to a new normal after a loved one's passing.
This episode of Eldercare Success is rich with insights and recommendations for you and other caregivers to maintain balance and mental health while fulfilling their caregiving duties.
Key Takeaways: How to. . .
- 📓 Better understand your role and position as a caregiver
- 🌟 Redefine your life after caregiving
- 📝 Maintain your personal identity
- ⚖️Normalize caregiving experiences
- 🧘♀️Get the right support from friends and family at the right time
- 💔How to move with strength.
Episode Goals:
This episode of Eldercare Success aims to support and empower caregivers like you to understand how to identify some of the key issues that will make your life easier after your care role has been completed. Even if you're in the beginning, middle, or end of your caregiving role, this episode can help you find more strength for yourself and those you love and who are dependent on your support.
Helpful Links:
- Center for Health Outcomes and Interdisciplinary Research: Massachusetts General Hospital
- Dr. Evan Plys, Ph.S. ABPP
- Podcast: Eldercare Success (please share with those you care about)
- Book: How to Survive 911 Medical Emergencies, Step-by-Step Before, During, and After
- Eldercare Success on YouTube
- Eldercare Success, link to ask Nancy a question: A small blue tab on the right side of the page says "Send a Voice Mail Message to Nancy." Click on that and follow the directions on the pop-up. Then, send me your comments and questions so I can answer them on the show.
00:00 Introduction to...
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nancy May (00:07):
Hello, everybody.
It's Nancy May and Doing itBest With Eldercare Success.
And today's episode is one that actuallystarted with a question I had myself.
And it's all related around whathappens to those of us that are not just
caring for one parent or two parents,but three or four, or maybe even five
(00:31):
family members over the course of time.
And What happens with our ownsense of identity and wellbeing?
Do we forget who we are?
Are we tied to that or not?
So on that front, I havea guest here today, Dr.
(00:51):
Evan Plyes, who's a PhD andlicensed clinical psychologist,
board certified gerontologist.
Psychologist at the Center for HealthOutcomes and Internal Disciplinary
Research at Massachusetts GeneralHospital in Boston, Massachusetts.
He's also a faculty member at the HarvardMedical School and provides psychotherapy
(01:14):
services to caregivers to improve theiremotional health and wellbeing and does
research on adults and caregivers as well.
So this is just such animportant subject, Evan, that.
Let's just dive in and getdirty in a good kind of way.
Evan Plys PhD (01:35):
Yeah, well, thanks so much for having me.
and, uh, yeah, so I, I do a lot of,work clinically with, caregivers.
So, I'm coming at it from kind of likethe therapist, doing psychotherapy angle.
And, the issue you're discussing.
If we think about caregiving as a rolethat we inhabit, just like many other
(01:58):
roles in our life, it can be, you know,employee, uh, parent, child, uh, et
cetera, caregiver is another role thatwe add, over the, the course of our life.
At different phases of life andat different circumstances, roles
become bigger and, some rolesemerge as, taking up more time.
(02:21):
some roles also givemore meaning and purpose.
and so I think when we, when wethink about that, like, feeling,
very connected to being a caregiver.
it, it's really being connected to thatrole, that you're inhabiting and how that
has surfaced as something very important,and often time consuming for you.
Nancy May (02:43):
One thing I feel is very interesting for us to even talk about is
how many people, although we are caringfor somebody that we love, especially
we're talking about elder care rightnow, really elderly parents, it could
be a spouse, it could be another familymember, older people, that the term
(03:06):
caregiver is one that so many of us shun.
I would even say I did that myself,even though I was not technically
a physical hands on caregiver allthe time with my folks, because
I did this from 1200 miles away.
I had a team of people that wereworking with me or aides to manage that.
(03:28):
Daily getting out of bed, makingsure they're physically clean and
safe and mentally safe as well.
But that term caregiver is one that Ipersonally shunned for a long time, and
it wasn't until later on that I realized,you know what, taking care of everything
else is what it is, and it's almostlike, I hear people say, oh, that's
(03:49):
almost beneath me, I'm not a caregiver.
Do you find people are sayingthat or doing that or just quietly
admitting or afraid to admit thatcaregiver can actually be a good thing?
Evan Plys PhD (04:01):
Yeah, sometimes there's people who don't identify
with, uh, the role of caregiver and,also there are language preferences.
Some people prefer care partner, carer,or, defining it in some different way.
I think that, in my experience, mostpeople are okay with the term caregiver.
(04:22):
I think.
I think where it become where it canbecome problematic is, it is kind
of negating all those other roles.
so when people identify, like, asI am a caregiver, then, you know,
people are multi dimensional.
Nancy May (04:38):
It's like you lose your identity.
I'm no longer a leader, an executive,I'm a caregiver, but we can be both.
Evan Plys PhD (04:46):
Yeah, absolutely.
And, where that gets people in troublethat I often see is when we actually
think about a caregiver, like, that termis also used professionally, so it's a,
it's a term that's coming from the fieldof medicine, and I think, inherently,
I think sometimes we actually, when wename ourselves as caregivers, um, what
(05:11):
are we comparing ourselves to, like, Ithink sometimes we're comparing ourselves
to, what a professional nurse would do,what, people in the field of healthcare
would do, and we're simply not doing it.
In that type of role,
Nancy May (05:25):
And maybe I don't want to be a nurse and maybe I don't want to be a
doctor or maybe I don't want to be anaide, but I'm, I don't want to use the
word stuck, but it's the only word Ican think of, like stuck in this role.
It's my responsibility todo, well for somebody that I
loved and who cared for me.
But it's, it's almost hard to, adoptthat the term, but it's really, I think
(05:48):
the role in making that merge into nowbeing the one that they are dependent on.
Evan Plys PhD (05:56):
yeah, and it's, I mean, it's like, it's kind of like,
Nancy May (05:59):
It's scary.
Evan Plys PhD (06:01):
yeah, and setting yourself up for a job with, you
know, hopefully do get training,
Nancy May (06:06):
was about to say, John, with no training, you just, sometimes
you're just like, Oh my God, likethis, you know, it's hit the fan.
I gotta jump in and fly downor fly out to somewhere to,
to pick mom up off the floor.
Evan Plys PhD (06:20):
and again, from the mental health, kind of
emotional health side of things.
It's more of that comparison.
So I'm making comparisons of myself andmy performance to that of a professional.
Nancy May (06:32):
And what if I fail?
Evan Plys PhD (06:34):
What if you fail?
Then I feel like the stakes are a littlebit higher, but also it's not really
a fair comparison, not just becauseof the training, but people who are
professional caregivers have shifts.
And so that's a huge difference.
Nancy May (06:51):
Family members don't.
We're always on.
Whether it's physically thereor emotionally there, right?
Evan Plys PhD (06:56):
exactly.
And, and one of the things that Imentioned people as well, if you are a
nurse in a hospital and your spouse comesinto that hospital, likelihood is they're
not going to give you that assignmentbecause that's a conflict of interest.
Nancy May (07:11):
Mm hmm.
Evan Plys PhD (07:12):
So, you're really not a truly professional caregiver, the
field of medicine and healthcare hasidentified that, you being in this dual
role is not the best way to provide care.
and yet people findthemselves in that dual role.
That's not to say that caregiving is bad.
like a bad thing by any means,or that people don't care.
(07:35):
I think it's the, the way that youset your expectations up of that role.
So I'm holding myself toa standard that really, I
shouldn't have to hold myself to.
So one of the things that Ilike to do with some folks
is rename what caregiver is.
So,
Nancy May (07:55):
That is.
Evan Plys PhD (07:56):
about, well, it really depends on the individual,
like, what is that role?
because caregiver, again, thatis a healthcare professional,
Nancy May (08:07):
But what does caregiver look like to them?
Is that cleaning up and helping mom anddad cook meals or driving them to the
doctors or helping them stay physicallysafe and well, or is it from 1200 miles
away, paying bills and making sure thatthey do get to the points that they have
the right care, that, that the peoplewho shouldn't be there are not there.
(08:30):
And the people who should bethere are there kind of thing.
Evan Plys PhD (08:33):
yeah, is it the, the present son?
Is it the, loyal spouse?
whatever, whatever.
Make sense for you and in that rolein that relationship, but I do think
redefining it, can be powerful for peoplebecause again, when we were adopting these
names and these roles that are preset.
(08:54):
It also kind of comes with this preset,expectations for how we're supposed to do
our
own baggage.
Yeah,
Nancy May (09:02):
so, there are a couple of different things I want to discuss,
just quickly, starting out in the roleas a quote unquote caregiver, whatever
that might look to the outside world.
One of the things that you're suggestingis that you sit down with yourself and
maybe a parent or siblings or a spouse andsay, this is my definition of caregiving.
(09:26):
Is that true to you?
Or just do you do it for yourself tosay, this is what my expectations are.
This is where I'm going to be And this ishow the role is going to evolve over time
Evan Plys PhD (09:39):
Yeah, having that conversation with yourself,
Nancy May (09:43):
is the thing to do.
Yeah.
So you don't just get into, I call itthe head trash, a non professional term,
but another term I, to it as like theitty bitty, you know, shitty committee.
I'll, I'll bleep that one out.
Evan Plys PhD (09:57):
I guess then, I would become the, uh, like
a professional head trash man.
Nancy May (10:03):
Oh, so yeah, you, that turns you into human sanitation collector.
Evan Plys PhD (10:07):
yeah, and see what I did.
I renamed it and now I have adifferent set of expectations
myself as a, as a mental trash
Nancy May (10:14):
As a mental trash collector versus a geropsychologist.
So one of the reasons why I wanted tohave this discussion to begin with, and
we had talked about the other week was.
Really looking at people that Ihave gotten to know over the years
who have been in this role of,we'll use the term caregiver here,
(10:37):
for multiple people over time.
they start with a mom, then it goesto mom passes, then it's the dad, then
it's the spouse, then it's, an in lawor some, so now they're in this role
for such an extended period of time.
And.
I'm not a psychologist, but thereare certainly those, those highs
(10:59):
and lows that we get addicted to.
Right?
it's the endorphins that come intoplay, the highs of the great joys and
the success and even the emergencies,that adrenaline that, goes through you.
And then the lows of whenthings don't necessarily go the
way you had hoped they would.
(11:20):
and then when those, that, thatrole as quote unquote caregiver ends
because there is nobody else thatneeds your help and your family.
There are two things that I've seen.
It's a sense of extreme grief becausenow the identity of who that person
is has been, and this is the exactterm that I had originally heard,
(11:45):
and which is why I reached out toyou, was -codependent on that role
and responsibility that you have.
Not as the role and responsibility ofbeing a leader in a corporate world
or as an employee someplace else oreven a cashier at Walmart, but you
have become so attached to that roleas the caregiver where somebody else
(12:07):
is dependent upon you all the time.
And now, poof, they're gone.
And the change in personality, the grief,the wondering of who am I anymore and
how to build relationships again in away like you might have done before.
Which may not be possible.
I mean, how often does that happen?
(12:29):
And, beyond the people that I've seen,is that something that's more prevalent
than we realize, even as, as individuals,because we're the ones going through it.
Evan Plys PhD (12:38):
Yeah, it's very common.
I would say in my experiencethat folks do grieve losing
the, you know, the caregivingactivities and and caregiving role.
Nancy May (12:51):
Not just the loss of the person, but the loss of the
role, uh, the need to, the, thedesire to, to help somebody or
the need to be there for someone.
Evan Plys PhD (13:00):
Exactly.
And, you, you hit on it early on of,you know, we know that caregiving is
met with stressors and challenges and.
Exactly.
Profound insights, it,it is not all negative.
There's a lot of positive thatcomes from caring for somebody,
there's, individual growth.
There's, uh, being able to restructurea relationship in a meaningful way.
(13:24):
And, and there's also kind of this,like, Transhuman kind of meaning that
can be, taken from the act of caregiving.
It's, it's very powerful and it givesyou meaning and purpose because it's a
very powerful thing, rooted in love.
And, it was a very strong emotion.
So it makes sense that, we get alot there's these really positive
(13:48):
things that we're getting.
and so it is difficultto, change that role.
I, I would say, I'm hesitantto to say, kind of losing that
role or abandoning that role.
Because I, I think that the thingsthat, the love, the, helping others
that, generativity or family, whateverthe kind of source of meaning and
(14:13):
purpose that you're taking fromthe caregiving role, that persists.
if, somebody in your familypasses away, you, it's not that
you no longer value family.
it's just the particular behavior.
That was scratching that itch for you.
Nancy May (14:30):
The day to day activities have changed, but the experience has
ideally made you a, a more rich humanbeing or person, not just to yourself
and your family, but maybe to, toothers in society that just cause how
you react to them differently now.
Evan Plys PhD (14:50):
Exactly.
And, again, the thing aboutyou, I would call it like a
value about your value system.
Nancy May (14:58):
Do they change, you think?
Evan Plys PhD (15:00):
I don't think the values change.
I think the behaviors that scratchthe itch of those values change.
So, I may still value helping others,or I may still value, respecting my
elders, even after the, caregivingrole for an aging parent ends.
(15:25):
I just need to now find another way.
Another behavior to enact that'swhat happens in the grieving process
of you're having to adapt, you'rehaving to find new behaviors to
maintain that sense of identity.
Yeah.
So
Nancy May (15:42):
Okay.
So I'm, I, I'm going to need a littleforgiveness here because that almost
sounds like an addictive personality.
It's like you go from, from one habitto another, to another, you know,
not that I'm a drinker, although Ido enjoy a glass of wine on a Friday
night every day, most Friday nights.
But
How do you replace that?
That one desire, that drivingdesire that you're so ingrained in
(16:05):
now that has become a day in andday out habit with something else.
Is that a fair assessment or not?
Yea, so it's
a little extreme in sayingthat's an addictive personality.
Evan Plys PhD (16:25):
You know, why, why do I, why do I smoke?
Nancy May (16:29):
I'm not a smoker.
I've never had a cigarette.
So, but I know other peoplewho do, and it's everything
I've heard is it feels good.
You know, it makes me feel good.
It's that sense of whatever it is.
It's, it's a euphoriathat makes me feel happy.
my mom who is a smoker for many years,when she quit, even after she quit, she
says, Oh, I could light up tomorrow,
Evan Plys PhD (16:52):
So, so maybe it's,
Nancy May (16:54):
self soothing with
Evan Plys PhD (16:56):
you know, it, it could be relaxing, could be activating,
could be, so there's something you'regetting something from that behavior.
So, if I choose then to quit smoking,I would presumably have to replace, you
know, whatever I was getting with a new
Nancy May (17:14):
something else, right,
Evan Plys PhD (17:16):
Or, or it becomes very challenging and, I'm not setting
myself up to be, you know, forsustainability of, of quitting smoking.
Um, so you can think oflife changes that way.
if I'm dropping the identity of being asmoker, there is a behavior that I was
(17:36):
previously doing to get a benefit andthat's why I kept doing that behavior.
Now, I'm changing the behavior.
And I need to do something new,replace that with a new behavior
that's doing the same thing.
So I might go for a walk.
Um, I might stretch.
I might, do something thatmakes me really happy.
(17:59):
a jolt of, serotonin.
so, but I'm, I'm continuing todo something in my life that
is for the express purposes of.
self soothing.
Nancy May (18:12):
right,
Evan Plys PhD (18:13):
Behavior changes, and so it's similar in thinking about if one
of the things that really has connectedme to that caregiving role is being able
to meet, being able to meet myself withsomebody who's, at a vulnerable time.
(18:35):
So now what that looks like might change.
Yeah, I might, uh, volunteer.
I might, find other ways in my lifeto, enact that need that I have.
And I would say that's probablya little bit more specific.
I would, it's probably a littlebit broader of like being
(18:56):
caring family or whatever, butyou're changing the, behavior.
and that happens throughout life.
You know, I, if I value myhealth, the way that I enact that.
Behaviorally is going to look differentfrom my 20s to my 40s to my 60s to my 80s.
Nancy May (19:16):
So.
In the caregiver role, because nowwe're going to, we're, we're no
longer a caregiver, our role andresponsibilities to somebody else in that.
That might have been frail orneed us for to survive, really,
is what that is, is changed.
And so we have to go back to what isa new norm and whatever that might be.
(19:40):
You say, going back to habits thatmade us feel good, What if we forgot
what those, because it was so long,we forgot what made us feel good.
Because we do, we just don't know anymore.
It's been 20 years and the friends thatwe had have disappeared because we don't
have the chance to go out with them.
And it's a job to keep relationshipsgoing, whether they're friends or family
(20:04):
members, . How do we get over that hurdleand finding what that new norm might look
like if we don't even know where to begin?
Evan Plys PhD (20:14):
Yeah, so I guess it does rest a little bit on the
assumption that we have a, a goodsense of self and our identity.
Um, and I would say it's probably a goodthing to check in on yourself with that.
There are a lot of websites outthere that, help people kind of
identify what their values are.
Um, Yeah, that languageagain is used a lot.
(20:37):
but even just, having some check insand this is why I also help people,
make sure that they're naming allthe roles in their life and not
losing, that sense of who they are.
Nancy May (20:50):
Not just having one, but having multiple, even in the
course of caregiving to be ableto say, you know, I like to knit.
So even though mom and dad may not bedoing it, I'm going to, order some
yarn and watch a YouTube and get backinto it because at the very least I can.
Make a sweater for mom, evenif it doesn't look perfect.
Right.
Evan Plys PhD (21:11):
Exactly, and, making sure that you, don't lose sight of,
who you are and and also recognizing.
I think 1 of the benefits of doingthat kind of regularly with yourself is
there might be times that that's not.
Feasible that that has to take aback burner to other responsibility,
Nancy May (21:31):
That's a practicality of, of when somebody else is so dependent
upon you to live there every day.
Evan Plys PhD (21:38):
yeah, if, if I'm taking care of a parent and they're in the
hospital, it may be that I can't, like,while they're in the hospital, I'm not
able to, do the, the baking that I love.
Um, but, that doesn't change that.
That's a big part of who Iam and, how I, I get joy.
(21:59):
It's just that this other roleis requiring a little bit more
time and nurturing right now.
Um, but that doesn't mean that that otherrole isn't important to who I am anymore.
Nancy May (22:14):
Well, and even we had, we had also discussed it at one point, a
little bit about how you take, how youtake the lessons that you've learned as
a caregiver and create, I wouldn't say anew identity, but, um, A new sense of, or
an additional sense of responsibility.
Not that we want to pileon more responsibility.
Sometimes we just like, at the endof it, just, I am so physically
(22:38):
and emotionally exhausted thatyou end up being numb for a while.
And I think that's a normal reactionfor many who have been so entrenched
in, in doing this work for, I wouldn'tsay it's not work, but, but having
the responsibility for somebody else.
And the, the only outcome ultimatelyin, in an older person is when they
(23:01):
pass and that versus when you've gotkids and the outcome is they leave
the nest, they go to college and,and they start their own family.
So it's a little bit more positivethan at the end of someone's life.
Although at the end of someone'slife, if you make that life have more
meaning at the, even at, I say evento the very last breath, then, uh.
(23:23):
That's positive too.
Creating a new, a new role or newresponsibility or a new way to, to
take those skills and leverage themis, is a good way to just at least
make the transition, I would say.
Is that correct?
Evan Plys PhD (23:38):
Yeah, and, loss, grief, bereavement is.
Really intense, and it may notbe instant that you're, you're
like, okay, now you wake up thenext day and I'm starting this new
Nancy May (23:53):
Life is all better.
He's gone.
Next.
Evan Plys PhD (23:57):
Yeah, exactly.
Nancy May (23:57):
Doesn't work that way.
Evan Plys PhD (23:59):
Yeah.
So, um, it, it takes time.
I think.
Also, the reality is it takes a lotof, legal and administrative time.
I would say death does not mark,necessarily the end of caregiving.
the way we set, have things set upis, there's still a lot to be done.
(24:20):
and so, there's actually that rolekind of continues, uh, for a while.
Nancy May (24:26):
And continue for years.
It was at the longest Iheard of somebody 17 years.
And, I've shared with a very close friend.
I said, you know, every.
As, as not just the POA for my folks, butalso their, their executor, trustee, every
piece of paper that I touched after thefact in my personal grieving process is.
(24:48):
I feel like I'm going throughthat last day all over again.
It's, it's touching one more thing.
It's just a reminder that they're gone.
And that's, for those who are listening,I want to let you know that with others
that I've spoken to, that's pretty normal.
And since we have a geropsychologist here,I guess maybe you can either reinforce
or tell me I'm full of, what, on that
Evan Plys PhD (25:09):
that's normal.
Yeah, no, that's definitely normal.
Nancy May (25:12):
Okay, I was like, oh my God, I thought I was like losing my mind.
I'm not like a whack job here goingon, but thank you for reinforcing.
I have, uh, I have not lost my mind.
That is a pretty normalsense of, of feeling
Evan Plys PhD (25:28):
Yeah, absolutely.
And, and, you know, there,there's a lot of feelings that
come with, that reminder of loss.
Nancy May (25:37):
and that responsibility and other, other families, members
who don't have that role will neverexperience that the way that you did.
Evan Plys PhD (25:45):
Yes, the, caregiving, in the verb tense is, is not
contained to 1 person, or veryrarely is contained to 1 person.
Um, but everybody does havea different experience.
and that's true of, when the carerecipient is alive and that's
true after, the care recipientpasses, everyone's caregiver
role experience is, is different.
(26:08):
And, it comes with different emotions,but I think pretty universally, loss is
hard and, really challenging and, and.
Associated with a lot of negativeemotion, I think prevailing, there's,
it's not all negative emotions.
There is, moments of, joy looking backon, the person or memorializing them,
(26:29):
remembering them, um, hopefully being ableto evaluate your, actions and role in a,
in a favorable way, uh, relief, uh, a lotof times that, and that's a very normal.
emotion, and a lot of it's sadness.
Nancy May (26:48):
So, just before we wrap up, I want to talk about maybe three things
that you would recommend people doto, to help them through this process
and understand that even though youhave become Well, the term I use when
I reach out to you is, codependent.
Maybe that's not thecorrect clinical term.
(27:10):
But you have become so dependenton identifying in that role
and the responsibilitiesthat they become habitual.
What are some things that youwould recommend people do?
I mean, we talked and I said, one of thethings that I did was create this podcast
to really take all the years of learningand experience and share that with others,
(27:30):
not just through my own life, but throughpeople like yourself to bring together,
to have that conversation and say, okay,it's, it's not necessarily a new identity.
It's a, it's a different, differentway of taking those life lessons
and hopefully making other people'slives just a little bit better.
And I see people write booksand some do different things.
(27:53):
They volunteer, but what are somepractical things that you would recommend?
somebody do to at least honorthe grief and come back to
what I would term a new normal.
So that, that weight of thegrief is not so compressing,
Evan Plys PhD (28:13):
So, I, I think 3 strategies, 1, is about
memorializing the person.
So, that person will continue to be inyour thoughts, will continue to be in
your world and your environment as well.
you will get reminders.
And so,
Nancy May (28:30):
like your guardian angel kind of thing,
Evan Plys PhD (28:32):
it, it could be that it could also be a picture, that
you see, um, and, um, And so I thinkhaving some type of way that you're
memorializing the person is kindof taking more control over that.
and, being able to set up those thoughtsand reminders and images in a way that
(28:53):
kind of fits for you and is, respectfulof the relationship that you had,
Nancy May (28:57):
so memorializing somebody else, you taking the action to do so
actually puts the control back in yourhand versus the person who needs and
need and care because they're gone.
Is that, is that a correct, Description
Evan Plys PhD (29:10):
I think it gives you more control over your grief
process.
it allows, you are constructingsomething for, a grieving process for,
or and
Nancy May (29:23):
being controlled by the grief.
Evan Plys PhD (29:25):
exactly.
So it gives you a little bitmore power in that relationship.
I would also say, abandon anytimeline expectations you have
around the grieving process.
Like, okay, it's been 6 months.
I should be feeling this way,or I shouldn't be feeling
this way, or it's been a year.
So that
Nancy May (29:44):
weeks, I should be going on.
Evan Plys PhD (29:46):
Yeah, exactly.
Nancy May (29:46):
The corporate world, like, okay, you've got your 10 days
of grief, now get back to work.
Evan Plys PhD (29:51):
Yeah, exactly.
It's not like, uh, taking leave.
Well, I mean, it shouldn't belike, taking leave where, you get
an X amount of, time for grief.
everyone's journey is different.
And so there's no timeline when youhave a timeline and you start to,
evaluate your, your grief and youremotional response, then you're going
(30:12):
to start to judge yourself and it'sjust going to make everything worse.
So I would say there's no timeline.
Nancy May (30:17):
And don't let other people tell you that there's a timeline.
I've heard that too.
It's like, it's time to get back out.
If you don't do that, others aregoing to drop you as friends.
Well, if they're going todo that, Then, screw it.
They are not your friends.
It's time to move on, is my attitude.
They weren't your friend to beginwith, if they've given you a timeline.
Just, Next.
Evan Plys PhD (30:38):
Yeah.
It sounds like not avery supportive friend.
Yeah, I'm a little harsher, so.
Um, and then the other thing I wouldsay is, kind of like what we were
talking about around, remindingyourself of your values, and adjusting
your behaviors to make sure that,you are, enacting those values.
(30:58):
So.
the example that you raised of, doingthis podcast, I'm, I'm assuming that, if
you were to do a values, exercise that,generativity or, that might be something
that you really value, and so, uh, youfound a behavior to enact that value.
(31:19):
I think when people do consider, thisnew normal, and, thinking about what
does life look like now, making sure thatyou're keeping those values in mind, and
I think the reason why, and what makesit challenging, because it might seem
kind of intuitive and natural, reallyintense sadness is Makes us want to avoid.
Nancy May (31:43):
Makes us want to avoid what?
Evan Plys PhD (31:46):
Do whatever we're doing.
Yeah, I mean, it, and it makessense from a body perspective.
I don't want to, I don't want todo something that I know is going
to make me feel really, really bad.
So, if I took a walk after dinnerevery night for 50 years with my
spouse, and then they passed away,and I cannot bring myself to go
(32:11):
on a walk because it's too sad.
It, the grief makes youavoid that behavior.
Knowing that what I got from that walk,is maybe companionship, I value health,
knowing those things allows you to replacethat behavior or rethink that behavior.
(32:32):
So, you will want toavoid things, sometimes.
again,
Nancy May (32:37):
because they hurt.
They're painful, right?
You want to avoid pain, whetherit's physical or emotional,
Evan Plys PhD (32:42):
people rarely sign themselves up to, receive
really painful, situations.
So, yeah, we naturally avoid it.
But making sure that, you know, thedetriment of that is we could avoid
behaviors that, give us meaning andpurpose and then it creates this cycle
of, now I'm not doing the things that giveme meaning, I'm feeling even worse now.
(33:06):
I'm just like stewing in those negativeemotions and then we can downward spiral.
So, very early on.
not even forget making behavior changes,forget, finding that new normal, just
being aware of what are the thingsthat give you meaning and purpose and
(33:27):
that you value and that you want tomake sure make it into that new normal.
Just knowing that is very powerful.
Because, eventually you will, findnew behaviors that kind of fuel that.
And so making sure that you're, scratchingall those itches, doing things in line
(33:48):
with your values and and you feel likeyourself is going to be really important.
Nancy May (33:53):
This has been a really fascinating discussion.
And, I'd like to just add one, one pointif, if I may, and you can correct me if
I'm wrong, but we're talking about valuesand the values that we have And I guess
reawakening or reidentifying what theyare within ourselves after a loss, of a
role or a person, whatever that might be.
(34:16):
And understanding and sort ofreidentifying what's Meaningful to you
is one thing, but I also think thatit's important to let others around you
know what those are so they don't tryand impose their values or their sense
of what you should be doing on you.
(34:38):
And sometimes that takes a littlebit of firmness to say, no,
that's not what I want to do.
That's not what I stand for.
is that correct?
Evan Plys PhD (34:47):
Yeah, I think it's great to share that with with other people.
And I think it gives otherpeople, kind of a framework
also it helps them support you.
so.
the more concrete you can be withyourself, and identifying those
values, the, the more, easier it willbe to share that with other people.
Nancy May (35:05):
thank you, Evan.
This has been, truly, I think avery important conversation that
we all need to have With Ourselves.
And with other family members and ourfriends, not just at the end when it
hurts, it hurts a lot, but throughoutthe whole process of caregiving so that
(35:26):
when that day comes, it's, I don't wantto say it's easier, because there's
nothing that can truly prepare you forthe loss of somebody that you love.
And, what I've learned is that each lossis different as much as somebody will
say, ah, you know, it's kind of the same.
No, I think that's, I think that's butkus.
(35:48):
It's not true.
because everybody's way that we exitthis earth is slightly different too.
Even if, The movies say otherwise, orsomebody else tells you, but are there
any sort of last parting words that youwould want to share with my audience??
Evan Plys PhD (36:04):
Yeah, to end on a, beautifully morbid note,
Nancy May (36:09):
please, dig that hole, no pun intended.
Evan Plys PhD (36:13):
if we think of, You had drawn the analogy of parenting and caring
for, uh, an elder, I think that death,end of life, loss is very intimate.
And yes, it's scary.
Yes, it's sad.
And it's extremely intimate, andthat's, I think a valuable framework
(36:36):
in, everyone anticipates grief,it, it becomes, you think about it.
It's not, it's not something that, like,oh, I never expected this to happen.
if you're caregiving for someone,you've had those thoughts.
And, I think that, appreciating theintimacy of it, will help kind of
(37:00):
frame your experience around that.
And so I think rather than viewingit as the, worst possible emotional
experience, it may be the worst possibleoutcome, or the, the most challenging
emotionally outcome, but also appreciatingthat it is, Truly the apex of intimacy
(37:24):
on, on the caregiving journey.
Nancy May (37:27):
Even if you're not there for that final breath of that final
moment, there are so many littlethings that happen to lead up to that.
I'd say, you know, please, if, if youhave missed being with somebody that you
love, that has, has passed just beforeyou could enter the door of the or their
(37:48):
room, whatever that might be, understandthat you have played such a pivotal
role in their lives and they in yours.
And I hope that you, you understandthat that's something to be cherished.
Evan Plys PhD (38:03):
Absolutely.
and thank you for, for clarifying that.
It doesn't have to be thatyou're there at that moment.
your physical presence is in, I wouldsay, as important as your, general
presence in the person's life.
Nancy May (38:19):
Thank you, Evan.
This has been a very, very specialand I, I hate to use the word caring
with it because I don't have the wordaround it to really give it a proper
due diligence or the proper meaning.
But I think it's, it's a verypersonal discussion that we all
need to have with ourselves.
And I really, really appreciate and thankyou for being here today as my guest.
(38:44):
And all the work that you do.
And for those who are listening, Iwill have a link to Evan's webpage
so you can reach him and get moreinformation on the work that he does.
If you need some help, you can reachout to some of the work that's being
done through Harvard and throughMass General Hospital up in Boston.
And on that note, if you'd like toshare a comment or a story that You
(39:10):
think is important to us, to me andto others who are listening or just to
yourselves, go to EldercareSuccess.Livethere's a little blue tab on the right
hand side of that page that you canclick on, and there you can press it.
A screen will pop up and you can leaveme a voicemail message or just send
me a written note that can share yourcomment, your ideas, your thoughts, or
(39:33):
recommendations for other speakers andguests who can be of help to yourself
and maybe other people who are listening.
I'm sure they would be anyway.
Also, please Please do not forget tosubscribe, to share it with a friend,
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(39:53):
Oh my God, what am I going to do next?
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Guaranteed, you will becalling 9 1 1 more than once.
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We'll see you on another episode,or we'll hear you on another
(40:16):
episode of Eldercare Success.
Take care, be well, and keep caring.
Bye bye.
Hello, everybody.
It's Nancy May and Doing itBest With Eldercare Success.
And today's episode is one that actuallystarted with a question I had myself.
And it's all related around whathappens to those of us that are not just
caring for one parent or two parents,but three or four, or maybe even five
(00:31):
family members over the course of time.
And What happens with our ownsense of identity and wellbeing?
Do we forget who we are?
Are we tied to that or not?
So on that front, I havea guest here today, Dr.
(00:51):
Evan Plyes, who's a PhD andlicensed clinical psychologist,
board certified gerontologist.
Psychologist at the Center for HealthOutcomes and Internal Disciplinary
Research at Massachusetts GeneralHospital in Boston, Massachusetts.
He's also a faculty member at the HarvardMedical School and provides psychotherapy
(01:14):
services to caregivers to improve theiremotional health and wellbeing and does
research on adults and caregivers as well.
So this is just such animportant subject, Evan, that.
Let's just dive in and getdirty in a good kind of way.
Evan Plys PhD (01:35):
Yeah, well, thanks so much for having me.
and, uh, yeah, so I, I do a lot of,work clinically with, caregivers.
So, I'm coming at it from kind of likethe therapist, doing psychotherapy angle.
And, the issue you're discussing.
If we think about caregiving as a rolethat we inhabit, just like many other
(01:58):
roles in our life, it can be, you know,employee, uh, parent, child, uh, et
cetera, caregiver is another role thatwe add, over the, the course of our life.
At different phases of life andat different circumstances, roles
become bigger and, some rolesemerge as, taking up more time.
(02:21):
some roles also givemore meaning and purpose.
and so I think when we, when wethink about that, like, feeling,
very connected to being a caregiver.
it, it's really being connected to thatrole, that you're inhabiting and how that
has surfaced as something very important,and often time consuming for you.
Nancy May (02:43):
One thing I feel is very interesting for us to even talk about is
how many people, although we are caringfor somebody that we love, especially
we're talking about elder care rightnow, really elderly parents, it could
be a spouse, it could be another familymember, older people, that the term
(03:06):
caregiver is one that so many of us shun.
I would even say I did that myself,even though I was not technically
a physical hands on caregiver allthe time with my folks, because
I did this from 1200 miles away.
I had a team of people that wereworking with me or aides to manage that.
(03:28):
Daily getting out of bed, makingsure they're physically clean and
safe and mentally safe as well.
But that term caregiver is one that Ipersonally shunned for a long time, and
it wasn't until later on that I realized,you know what, taking care of everything
else is what it is, and it's almostlike, I hear people say, oh, that's
(03:49):
almost beneath me, I'm not a caregiver.
Do you find people are sayingthat or doing that or just quietly
admitting or afraid to admit thatcaregiver can actually be a good thing?
Evan Plys PhD (04:01):
Yeah, sometimes there's people who don't identify
with, uh, the role of caregiver and,also there are language preferences.
Some people prefer care partner, carer,or, defining it in some different way.
I think that, in my experience, mostpeople are okay with the term caregiver.
(04:22):
I think.
I think where it become where it canbecome problematic is, it is kind
of negating all those other roles.
so when people identify, like, asI am a caregiver, then, you know,
people are multi dimensional.
Nancy May (04:38):
It's like you lose your identity.
I'm no longer a leader, an executive,I'm a caregiver, but we can be both.
Evan Plys PhD (04:46):
Yeah, absolutely.
And, where that gets people in troublethat I often see is when we actually
think about a caregiver, like, that termis also used professionally, so it's a,
it's a term that's coming from the fieldof medicine, and I think, inherently,
I think sometimes we actually, when wename ourselves as caregivers, um, what
(05:11):
are we comparing ourselves to, like, Ithink sometimes we're comparing ourselves
to, what a professional nurse would do,what, people in the field of healthcare
would do, and we're simply not doing it.
In that type of role,
Nancy May (05:25):
And maybe I don't want to be a nurse and maybe I don't want to be a
doctor or maybe I don't want to be anaide, but I'm, I don't want to use the
word stuck, but it's the only word Ican think of, like stuck in this role.
It's my responsibility todo, well for somebody that I
loved and who cared for me.
But it's, it's almost hard to, adoptthat the term, but it's really, I think
(05:48):
the role in making that merge into nowbeing the one that they are dependent on.
Evan Plys PhD (05:56):
yeah, and it's, I mean, it's like, it's kind of like,
Nancy May (05:59):
It's scary.
Evan Plys PhD (06:01):
yeah, and setting yourself up for a job with, you
know, hopefully do get training,
Nancy May (06:06):
was about to say, John, with no training, you just, sometimes
you're just like, Oh my God, likethis, you know, it's hit the fan.
I gotta jump in and fly downor fly out to somewhere to,
to pick mom up off the floor.
Evan Plys PhD (06:20):
and again, from the mental health, kind of
emotional health side of things.
It's more of that comparison.
So I'm making comparisons of myself andmy performance to that of a professional.
Nancy May (06:32):
And what if I fail?
Evan Plys PhD (06:34):
What if you fail?
Then I feel like the stakes are a littlebit higher, but also it's not really
a fair comparison, not just becauseof the training, but people who are
professional caregivers have shifts.
And so that's a huge difference.
Nancy May (06:51):
Family members don't.
We're always on.
Whether it's physically thereor emotionally there, right?
Evan Plys PhD (06:56):
exactly.
And, and one of the things that Imentioned people as well, if you are a
nurse in a hospital and your spouse comesinto that hospital, likelihood is they're
not going to give you that assignmentbecause that's a conflict of interest.
Nancy May (07:11):
Mm hmm.
Evan Plys PhD (07:12):
So, you're really not a truly professional caregiver, the
field of medicine and healthcare hasidentified that, you being in this dual
role is not the best way to provide care.
and yet people findthemselves in that dual role.
That's not to say that caregiving is bad.
like a bad thing by any means,or that people don't care.
(07:35):
I think it's the, the way that youset your expectations up of that role.
So I'm holding myself toa standard that really, I
shouldn't have to hold myself to.
So one of the things that Ilike to do with some folks
is rename what caregiver is.
So,
Nancy May (07:55):
That is.
Evan Plys PhD (07:56):
about, well, it really depends on the individual,
like, what is that role?
because caregiver, again, thatis a healthcare professional,
Nancy May (08:07):
But what does caregiver look like to them?
Is that cleaning up and helping mom anddad cook meals or driving them to the
doctors or helping them stay physicallysafe and well, or is it from 1200 miles
away, paying bills and making sure thatthey do get to the points that they have
the right care, that, that the peoplewho shouldn't be there are not there.
(08:30):
And the people who should bethere are there kind of thing.
Evan Plys PhD (08:33):
yeah, is it the, the present son?
Is it the, loyal spouse?
whatever, whatever.
Make sense for you and in that rolein that relationship, but I do think
redefining it, can be powerful for peoplebecause again, when we were adopting these
names and these roles that are preset.
(08:54):
It also kind of comes with this preset,expectations for how we're supposed to do
our
own baggage.
Yeah,
Nancy May (09:02):
so, there are a couple of different things I want to discuss,
just quickly, starting out in the roleas a quote unquote caregiver, whatever
that might look to the outside world.
One of the things that you're suggestingis that you sit down with yourself and
maybe a parent or siblings or a spouse andsay, this is my definition of caregiving.
(09:26):
Is that true to you?
Or just do you do it for yourself tosay, this is what my expectations are.
This is where I'm going to be And this ishow the role is going to evolve over time
Evan Plys PhD (09:39):
Yeah, having that conversation with yourself,
Nancy May (09:43):
is the thing to do.
Yeah.
So you don't just get into, I call itthe head trash, a non professional term,
but another term I, to it as like theitty bitty, you know, shitty committee.
I'll, I'll bleep that one out.
Evan Plys PhD (09:57):
I guess then, I would become the, uh, like
a professional head trash man.
Nancy May (10:03):
Oh, so yeah, you, that turns you into human sanitation collector.
Evan Plys PhD (10:07):
yeah, and see what I did.
I renamed it and now I have adifferent set of expectations
myself as a, as a mental trash
Nancy May (10:14):
As a mental trash collector versus a geropsychologist.
So one of the reasons why I wanted tohave this discussion to begin with, and
we had talked about the other week was.
Really looking at people that Ihave gotten to know over the years
who have been in this role of,we'll use the term caregiver here,
(10:37):
for multiple people over time.
they start with a mom, then it goesto mom passes, then it's the dad, then
it's the spouse, then it's, an in lawor some, so now they're in this role
for such an extended period of time.
And.
I'm not a psychologist, but thereare certainly those, those highs
(10:59):
and lows that we get addicted to.
Right?
it's the endorphins that come intoplay, the highs of the great joys and
the success and even the emergencies,that adrenaline that, goes through you.
And then the lows of whenthings don't necessarily go the
way you had hoped they would.
(11:20):
and then when those, that, thatrole as quote unquote caregiver ends
because there is nobody else thatneeds your help and your family.
There are two things that I've seen.
It's a sense of extreme grief becausenow the identity of who that person
is has been, and this is the exactterm that I had originally heard,
(11:45):
and which is why I reached out toyou, was -codependent on that role
and responsibility that you have.
Not as the role and responsibility ofbeing a leader in a corporate world
or as an employee someplace else oreven a cashier at Walmart, but you
have become so attached to that roleas the caregiver where somebody else
(12:07):
is dependent upon you all the time.
And now, poof, they're gone.
And the change in personality, the grief,the wondering of who am I anymore and
how to build relationships again in away like you might have done before.
Which may not be possible.
I mean, how often does that happen?
(12:29):
And, beyond the people that I've seen,is that something that's more prevalent
than we realize, even as, as individuals,because we're the ones going through it.
Evan Plys PhD (12:38):
Yeah, it's very common.
I would say in my experiencethat folks do grieve losing
the, you know, the caregivingactivities and and caregiving role.
Nancy May (12:51):
Not just the loss of the person, but the loss of the
role, uh, the need to, the, thedesire to, to help somebody or
the need to be there for someone.
Evan Plys PhD (13:00):
Exactly.
And, you, you hit on it early on of,you know, we know that caregiving is
met with stressors and challenges and.
Exactly.
Profound insights, it,it is not all negative.
There's a lot of positive thatcomes from caring for somebody,
there's, individual growth.
There's, uh, being able to restructurea relationship in a meaningful way.
(13:24):
And, and there's also kind of this,like, Transhuman kind of meaning that
can be, taken from the act of caregiving.
It's, it's very powerful and it givesyou meaning and purpose because it's a
very powerful thing, rooted in love.
And, it was a very strong emotion.
So it makes sense that, we get alot there's these really positive
(13:48):
things that we're getting.
and so it is difficultto, change that role.
I, I would say, I'm hesitantto to say, kind of losing that
role or abandoning that role.
Because I, I think that the thingsthat, the love, the, helping others
that, generativity or family, whateverthe kind of source of meaning and
(14:13):
purpose that you're taking fromthe caregiving role, that persists.
if, somebody in your familypasses away, you, it's not that
you no longer value family.
it's just the particular behavior.
That was scratching that itch for you.
Nancy May (14:30):
The day to day activities have changed, but the experience has
ideally made you a, a more rich humanbeing or person, not just to yourself
and your family, but maybe to, toothers in society that just cause how
you react to them differently now.
Evan Plys PhD (14:50):
Exactly.
And, again, the thing aboutyou, I would call it like a
value about your value system.
Nancy May (14:58):
Do they change, you think?
Evan Plys PhD (15:00):
I don't think the values change.
I think the behaviors that scratchthe itch of those values change.
So, I may still value helping others,or I may still value, respecting my
elders, even after the, caregivingrole for an aging parent ends.
(15:25):
I just need to now find another way.
Another behavior to enact that'swhat happens in the grieving process
of you're having to adapt, you'rehaving to find new behaviors to
maintain that sense of identity.
Yeah.
So
Nancy May (15:42):
Okay.
So I'm, I, I'm going to need a littleforgiveness here because that almost
sounds like an addictive personality.
It's like you go from, from one habitto another, to another, you know,
not that I'm a drinker, although Ido enjoy a glass of wine on a Friday
night every day, most Friday nights.
But
How do you replace that?
That one desire, that drivingdesire that you're so ingrained in
(16:05):
now that has become a day in andday out habit with something else.
Is that a fair assessment or not?
Yea, so it's
a little extreme in sayingthat's an addictive personality.
Evan Plys PhD (16:25):
You know, why, why do I, why do I smoke?
Nancy May (16:29):
I'm not a smoker.
I've never had a cigarette.
So, but I know other peoplewho do, and it's everything
I've heard is it feels good.
You know, it makes me feel good.
It's that sense of whatever it is.
It's, it's a euphoriathat makes me feel happy.
my mom who is a smoker for many years,when she quit, even after she quit, she
says, Oh, I could light up tomorrow,
Evan Plys PhD (16:52):
So, so maybe it's,
Nancy May (16:54):
self soothing with
Evan Plys PhD (16:56):
you know, it, it could be relaxing, could be activating,
could be, so there's something you'regetting something from that behavior.
So, if I choose then to quit smoking,I would presumably have to replace, you
know, whatever I was getting with a new
Nancy May (17:14):
something else, right,
Evan Plys PhD (17:16):
Or, or it becomes very challenging and, I'm not setting
myself up to be, you know, forsustainability of, of quitting smoking.
Um, so you can think oflife changes that way.
if I'm dropping the identity of being asmoker, there is a behavior that I was
(17:36):
previously doing to get a benefit andthat's why I kept doing that behavior.
Now, I'm changing the behavior.
And I need to do something new,replace that with a new behavior
that's doing the same thing.
So I might go for a walk.
Um, I might stretch.
I might, do something thatmakes me really happy.
(17:59):
a jolt of, serotonin.
so, but I'm, I'm continuing todo something in my life that
is for the express purposes of.
self soothing.
Nancy May (18:12):
right,
Evan Plys PhD (18:13):
Behavior changes, and so it's similar in thinking about if one
of the things that really has connectedme to that caregiving role is being able
to meet, being able to meet myself withsomebody who's, at a vulnerable time.
(18:35):
So now what that looks like might change.
Yeah, I might, uh, volunteer.
I might, find other ways in my lifeto, enact that need that I have.
And I would say that's probablya little bit more specific.
I would, it's probably a littlebit broader of like being
(18:56):
caring family or whatever, butyou're changing the, behavior.
and that happens throughout life.
You know, I, if I value myhealth, the way that I enact that.
Behaviorally is going to look differentfrom my 20s to my 40s to my 60s to my 80s.
Nancy May (19:16):
So.
In the caregiver role, because nowwe're going to, we're, we're no
longer a caregiver, our role andresponsibilities to somebody else in that.
That might have been frail orneed us for to survive, really,
is what that is, is changed.
And so we have to go back to what isa new norm and whatever that might be.
(19:40):
You say, going back to habits thatmade us feel good, What if we forgot
what those, because it was so long,we forgot what made us feel good.
Because we do, we just don't know anymore.
It's been 20 years and the friends thatwe had have disappeared because we don't
have the chance to go out with them.
And it's a job to keep relationshipsgoing, whether they're friends or family
(20:04):
members, . How do we get over that hurdleand finding what that new norm might look
like if we don't even know where to begin?
Evan Plys PhD (20:14):
Yeah, so I guess it does rest a little bit on the
assumption that we have a, a goodsense of self and our identity.
Um, and I would say it's probably a goodthing to check in on yourself with that.
There are a lot of websites outthere that, help people kind of
identify what their values are.
Um, Yeah, that languageagain is used a lot.
(20:37):
but even just, having some check insand this is why I also help people,
make sure that they're naming allthe roles in their life and not
losing, that sense of who they are.
Nancy May (20:50):
Not just having one, but having multiple, even in the
course of caregiving to be ableto say, you know, I like to knit.
So even though mom and dad may not bedoing it, I'm going to, order some
yarn and watch a YouTube and get backinto it because at the very least I can.
Make a sweater for mom, evenif it doesn't look perfect.
Right.
Evan Plys PhD (21:11):
Exactly, and, making sure that you, don't lose sight of,
who you are and and also recognizing.
I think 1 of the benefits of doingthat kind of regularly with yourself is
there might be times that that's not.
Feasible that that has to take aback burner to other responsibility,
Nancy May (21:31):
That's a practicality of, of when somebody else is so dependent
upon you to live there every day.
Evan Plys PhD (21:38):
yeah, if, if I'm taking care of a parent and they're in the
hospital, it may be that I can't, like,while they're in the hospital, I'm not
able to, do the, the baking that I love.
Um, but, that doesn't change that.
That's a big part of who Iam and, how I, I get joy.
(21:59):
It's just that this other roleis requiring a little bit more
time and nurturing right now.
Um, but that doesn't mean that that otherrole isn't important to who I am anymore.
Nancy May (22:14):
Well, and even we had, we had also discussed it at one point, a
little bit about how you take, how youtake the lessons that you've learned as
a caregiver and create, I wouldn't say anew identity, but, um, A new sense of, or
an additional sense of responsibility.
Not that we want to pileon more responsibility.
Sometimes we just like, at the endof it, just, I am so physically
(22:38):
and emotionally exhausted thatyou end up being numb for a while.
And I think that's a normal reactionfor many who have been so entrenched
in, in doing this work for, I wouldn'tsay it's not work, but, but having
the responsibility for somebody else.
And the, the only outcome ultimatelyin, in an older person is when they
(23:01):
pass and that versus when you've gotkids and the outcome is they leave
the nest, they go to college and,and they start their own family.
So it's a little bit more positivethan at the end of someone's life.
Although at the end of someone'slife, if you make that life have more
meaning at the, even at, I say evento the very last breath, then, uh.
(23:23):
That's positive too.
Creating a new, a new role or newresponsibility or a new way to, to
take those skills and leverage themis, is a good way to just at least
make the transition, I would say.
Is that correct?
Evan Plys PhD (23:38):
Yeah, and, loss, grief, bereavement is.
Really intense, and it may notbe instant that you're, you're
like, okay, now you wake up thenext day and I'm starting this new
Nancy May (23:53):
Life is all better.
He's gone.
Next.
Evan Plys PhD (23:57):
Yeah, exactly.
Nancy May (23:57):
Doesn't work that way.
Evan Plys PhD (23:59):
Yeah.
So, um, it, it takes time.
I think.
Also, the reality is it takes a lotof, legal and administrative time.
I would say death does not mark,necessarily the end of caregiving.
the way we set, have things set upis, there's still a lot to be done.
(24:20):
and so, there's actually that rolekind of continues, uh, for a while.
Nancy May (24:26):
And continue for years.
It was at the longest Iheard of somebody 17 years.
And, I've shared with a very close friend.
I said, you know, every.
As, as not just the POA for my folks, butalso their, their executor, trustee, every
piece of paper that I touched after thefact in my personal grieving process is.
(24:48):
I feel like I'm going throughthat last day all over again.
It's, it's touching one more thing.
It's just a reminder that they're gone.
And that's, for those who are listening,I want to let you know that with others
that I've spoken to, that's pretty normal.
And since we have a geropsychologist here,I guess maybe you can either reinforce
or tell me I'm full of, what, on that
Evan Plys PhD (25:09):
that's normal.
Yeah, no, that's definitely normal.
Nancy May (25:12):
Okay, I was like, oh my God, I thought I was like losing my mind.
I'm not like a whack job here goingon, but thank you for reinforcing.
I have, uh, I have not lost my mind.
That is a pretty normalsense of, of feeling
Evan Plys PhD (25:28):
Yeah, absolutely.
And, and, you know, there,there's a lot of feelings that
come with, that reminder of loss.
Nancy May (25:37):
and that responsibility and other, other families, members
who don't have that role will neverexperience that the way that you did.
Evan Plys PhD (25:45):
Yes, the, caregiving, in the verb tense is, is not
contained to 1 person, or veryrarely is contained to 1 person.
Um, but everybody does havea different experience.
and that's true of, when the carerecipient is alive and that's
true after, the care recipientpasses, everyone's caregiver
role experience is, is different.
(26:08):
And, it comes with different emotions,but I think pretty universally, loss is
hard and, really challenging and, and.
Associated with a lot of negativeemotion, I think prevailing, there's,
it's not all negative emotions.
There is, moments of, joy looking backon, the person or memorializing them,
(26:29):
remembering them, um, hopefully being ableto evaluate your, actions and role in a,
in a favorable way, uh, relief, uh, a lotof times that, and that's a very normal.
emotion, and a lot of it's sadness.
Nancy May (26:48):
So, just before we wrap up, I want to talk about maybe three things
that you would recommend people doto, to help them through this process
and understand that even though youhave become Well, the term I use when
I reach out to you is, codependent.
Maybe that's not thecorrect clinical term.
(27:10):
But you have become so dependenton identifying in that role
and the responsibilitiesthat they become habitual.
What are some things that youwould recommend people do?
I mean, we talked and I said, one of thethings that I did was create this podcast
to really take all the years of learningand experience and share that with others,
(27:30):
not just through my own life, but throughpeople like yourself to bring together,
to have that conversation and say, okay,it's, it's not necessarily a new identity.
It's a, it's a different, differentway of taking those life lessons
and hopefully making other people'slives just a little bit better.
And I see people write booksand some do different things.
(27:53):
They volunteer, but what are somepractical things that you would recommend?
somebody do to at least honorthe grief and come back to
what I would term a new normal.
So that, that weight of thegrief is not so compressing,
Evan Plys PhD (28:13):
So, I, I think 3 strategies, 1, is about
memorializing the person.
So, that person will continue to be inyour thoughts, will continue to be in
your world and your environment as well.
you will get reminders.
And so,
Nancy May (28:30):
like your guardian angel kind of thing,
Evan Plys PhD (28:32):
it, it could be that it could also be a picture, that
you see, um, and, um, And so I thinkhaving some type of way that you're
memorializing the person is kindof taking more control over that.
and, being able to set up those thoughtsand reminders and images in a way that
(28:53):
kind of fits for you and is, respectfulof the relationship that you had,
Nancy May (28:57):
so memorializing somebody else, you taking the action to do so
actually puts the control back in yourhand versus the person who needs and
need and care because they're gone.
Is that, is that a correct, Description
Evan Plys PhD (29:10):
I think it gives you more control over your grief
process.
it allows, you are constructingsomething for, a grieving process for,
or and
Nancy May (29:23):
being controlled by the grief.
Evan Plys PhD (29:25):
exactly.
So it gives you a little bitmore power in that relationship.
I would also say, abandon anytimeline expectations you have
around the grieving process.
Like, okay, it's been 6 months.
I should be feeling this way,or I shouldn't be feeling
this way, or it's been a year.
So that
Nancy May (29:44):
weeks, I should be going on.
Evan Plys PhD (29:46):
Yeah, exactly.
Nancy May (29:46):
The corporate world, like, okay, you've got your 10 days
of grief, now get back to work.
Evan Plys PhD (29:51):
Yeah, exactly.
It's not like, uh, taking leave.
Well, I mean, it shouldn't belike, taking leave where, you get
an X amount of, time for grief.
everyone's journey is different.
And so there's no timeline when youhave a timeline and you start to,
evaluate your, your grief and youremotional response, then you're going
(30:12):
to start to judge yourself and it'sjust going to make everything worse.
So I would say there's no timeline.
Nancy May (30:17):
And don't let other people tell you that there's a timeline.
I've heard that too.
It's like, it's time to get back out.
If you don't do that, others aregoing to drop you as friends.
Well, if they're going todo that, Then, screw it.
They are not your friends.
It's time to move on, is my attitude.
They weren't your friend to beginwith, if they've given you a timeline.
Just, Next.
Evan Plys PhD (30:38):
Yeah.
It sounds like not avery supportive friend.
Yeah, I'm a little harsher, so.
Um, and then the other thing I wouldsay is, kind of like what we were
talking about around, remindingyourself of your values, and adjusting
your behaviors to make sure that,you are, enacting those values.
(30:58):
So.
the example that you raised of, doingthis podcast, I'm, I'm assuming that, if
you were to do a values, exercise that,generativity or, that might be something
that you really value, and so, uh, youfound a behavior to enact that value.
(31:19):
I think when people do consider, thisnew normal, and, thinking about what
does life look like now, making sure thatyou're keeping those values in mind, and
I think the reason why, and what makesit challenging, because it might seem
kind of intuitive and natural, reallyintense sadness is Makes us want to avoid.
Nancy May (31:43):
Makes us want to avoid what?
Evan Plys PhD (31:46):
Do whatever we're doing.
Yeah, I mean, it, and it makessense from a body perspective.
I don't want to, I don't want todo something that I know is going
to make me feel really, really bad.
So, if I took a walk after dinnerevery night for 50 years with my
spouse, and then they passed away,and I cannot bring myself to go
(32:11):
on a walk because it's too sad.
It, the grief makes youavoid that behavior.
Knowing that what I got from that walk,is maybe companionship, I value health,
knowing those things allows you to replacethat behavior or rethink that behavior.
(32:32):
So, you will want toavoid things, sometimes.
again,
Nancy May (32:37):
because they hurt.
They're painful, right?
You want to avoid pain, whetherit's physical or emotional,
Evan Plys PhD (32:42):
people rarely sign themselves up to, receive
really painful, situations.
So, yeah, we naturally avoid it.
But making sure that, you know, thedetriment of that is we could avoid
behaviors that, give us meaning andpurpose and then it creates this cycle
of, now I'm not doing the things that giveme meaning, I'm feeling even worse now.
(33:06):
I'm just like stewing in those negativeemotions and then we can downward spiral.
So, very early on.
not even forget making behavior changes,forget, finding that new normal, just
being aware of what are the thingsthat give you meaning and purpose and
(33:27):
that you value and that you want tomake sure make it into that new normal.
Just knowing that is very powerful.
Because, eventually you will, findnew behaviors that kind of fuel that.
And so making sure that you're, scratchingall those itches, doing things in line
(33:48):
with your values and and you feel likeyourself is going to be really important.
Nancy May (33:53):
This has been a really fascinating discussion.
And, I'd like to just add one, one pointif, if I may, and you can correct me if
I'm wrong, but we're talking about valuesand the values that we have And I guess
reawakening or reidentifying what theyare within ourselves after a loss, of a
role or a person, whatever that might be.
(34:16):
And understanding and sort ofreidentifying what's Meaningful to you
is one thing, but I also think thatit's important to let others around you
know what those are so they don't tryand impose their values or their sense
of what you should be doing on you.
(34:38):
And sometimes that takes a littlebit of firmness to say, no,
that's not what I want to do.
That's not what I stand for.
is that correct?
Evan Plys PhD (34:47):
Yeah, I think it's great to share that with with other people.
And I think it gives otherpeople, kind of a framework
also it helps them support you.
so.
the more concrete you can be withyourself, and identifying those
values, the, the more, easier it willbe to share that with other people.
Nancy May (35:05):
thank you, Evan.
This has been, truly, I think avery important conversation that
we all need to have With Ourselves.
And with other family members and ourfriends, not just at the end when it
hurts, it hurts a lot, but throughoutthe whole process of caregiving so that
(35:26):
when that day comes, it's, I don't wantto say it's easier, because there's
nothing that can truly prepare you forthe loss of somebody that you love.
And, what I've learned is that each lossis different as much as somebody will
say, ah, you know, it's kind of the same.
No, I think that's, I think that's butkus.
(35:48):
It's not true.
because everybody's way that we exitthis earth is slightly different too.
Even if, The movies say otherwise, orsomebody else tells you, but are there
any sort of last parting words that youwould want to share with my audience??
Evan Plys PhD (36:04):
Yeah, to end on a, beautifully morbid note,
Nancy May (36:09):
please, dig that hole, no pun intended.
Evan Plys PhD (36:13):
if we think of, You had drawn the analogy of parenting and caring
for, uh, an elder, I think that death,end of life, loss is very intimate.
And yes, it's scary.
Yes, it's sad.
And it's extremely intimate, andthat's, I think a valuable framework
(36:36):
in, everyone anticipates grief,it, it becomes, you think about it.
It's not, it's not something that, like,oh, I never expected this to happen.
if you're caregiving for someone,you've had those thoughts.
And, I think that, appreciating theintimacy of it, will help kind of
(37:00):
frame your experience around that.
And so I think rather than viewingit as the, worst possible emotional
experience, it may be the worst possibleoutcome, or the, the most challenging
emotionally outcome, but also appreciatingthat it is, Truly the apex of intimacy
(37:24):
on, on the caregiving journey.
Nancy May (37:27):
Even if you're not there for that final breath of that final
moment, there are so many littlethings that happen to lead up to that.
I'd say, you know, please, if, if youhave missed being with somebody that you
love, that has, has passed just beforeyou could enter the door of the or their
(37:48):
room, whatever that might be, understandthat you have played such a pivotal
role in their lives and they in yours.
And I hope that you, you understandthat that's something to be cherished.
Evan Plys PhD (38:03):
Absolutely.
and thank you for, for clarifying that.
It doesn't have to be thatyou're there at that moment.
your physical presence is in, I wouldsay, as important as your, general
presence in the person's life.
Nancy May (38:19):
Thank you, Evan.
This has been a very, very specialand I, I hate to use the word caring
with it because I don't have the wordaround it to really give it a proper
due diligence or the proper meaning.
But I think it's, it's a verypersonal discussion that we all
need to have with ourselves.
And I really, really appreciate and thankyou for being here today as my guest.
(38:44):
And all the work that you do.
And for those who are listening, Iwill have a link to Evan's webpage
so you can reach him and get moreinformation on the work that he does.
If you need some help, you can reachout to some of the work that's being
done through Harvard and throughMass General Hospital up in Boston.
And on that note, if you'd like toshare a comment or a story that You
(39:10):
think is important to us, to me andto others who are listening or just to
yourselves, go to EldercareSuccess.Livethere's a little blue tab on the right
hand side of that page that you canclick on, and there you can press it.
A screen will pop up and you can leaveme a voicemail message or just send
me a written note that can share yourcomment, your ideas, your thoughts, or
(39:33):
recommendations for other speakers andguests who can be of help to yourself
and maybe other people who are listening.
I'm sure they would be anyway.
Also, please Please do not forget tosubscribe, to share it with a friend,
a family member, or even somebody whomight be standing online at Starbucks
because you never know who might bestressed out and freaking out thinking,
(39:53):
Oh my God, what am I going to do next?
It can be your gift to thembecause it's our gift to you.
And do get the book, How to Survive9 1 1 Medical Emergencies, a step by
step guide before, during, and after.
Guaranteed, you will becalling 9 1 1 more than once.
So on that note, thank youfor joining us here today.
We'll see you on another episode,or we'll hear you on another
(40:16):
episode of Eldercare Success.
Take care, be well, and keep caring.
Bye bye.
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