When a person receives a diagnosis of Parkinson’s disease, the effects extend out into that person’s world. Family members often find themselves in new roles as caregivers—or, in the phrase of Sheila Moore, a licensed clinical social worker at Pacific Neuroscience Institute—care partners. Sheila works with people who have Parkinson’s disease and their care partners at PNI and at PNI’s Movement Disorders Center. Sheila has a wealth of information, resources and referrals for families, as well as support for those incredibly trying times. Sheila also works closely with PNI’s Parkinson’s disease and movement disorder neurologists, Dr. Melita Petrossian and Dr. Natalie Diaz as well as the rest of the team. Sheila shares with us today some of her experiences and advice for when situations become tough, along with her top ten tips for the empowered care partner. We also talk to Mary, who found herself thrust into the role of care partner when her husband Charles received a Parkinson’s diagnosis at PNI almost 10 years ago. Mary has worked with Sheila and participated in support groups, and offers her own advice and experience in how to cope with this challenging situation.
When a person receives a diagnosis of Parkinson’s disease, the effects extend out into that person’s world. Family members often find themselves in new roles as caregivers—or, in the phrase of Sheila Moore, a licensed clinical social worker at Pacific Neuroscience Institute—care partners. Sheila works with people who have Parkinson’s disease and their care partners at PNI and at PNI’s Movement Disorders Center. Sheila has a wealth of information, resources and referrals for families, as well as support for those incredibly trying times. Sheila also works closely with PNI’s Parkinson’s disease and movement disorder neurologists, Dr. Melita Petrossian and Dr. Natalie Diaz as well as the rest of the team. Sheila shares with us today some of her experiences and advice for when situations become tough, along with her top ten tips for the empowered care partner. We also talk to Mary, who found herself thrust into the role of care partner when her husband Charles received a Parkinson’s diagnosis at PNI almost 10 years ago. Mary has worked with Sheila and participated in support groups, and offers her own advice and experience in how to cope with this challenging situation.
(gentle music)
of Parkinson's disease,
the effects extend out
into that person's world.
Family members often find
themselves in new roles
as caregivers, or in the
phrase of Sheila Moore,
a licensed clinical social worker
at Pacific Neuroscience Institute,
"care partners."
Sheila works with people
who have Parkinson's disease
and their care partners at PNI
and at PNI's Pacific
Movement Disorders Center.
Sheila has a wealth of
information, resources,
and referrals for families,
as well as support for those
incredibly trying times.
Sheila also works closely
with PNI's Parkinson's disease
and movement disorder
specialists, Dr. Melita Petrossian
and Dr. Natalie Diaz and
the rest of the team.
Sheila shares with us today
some of her experiences
and advice for these situations,
as well as her top 10 tips for
the empowered care partner.
We also talked to Mary,
who found herself thrust
into the role of care partner
when her husband, Charles,
received his Parkinson's diagnosis at PNI
almost 10 years ago.
Mary has worked with
Sheila and participated
in support groups and offers
her own advice and experience
in how to cope with this
challenging situation.
Hi, and welcome to the
"Think Neuro" podcast.
I'm your host, Dan Fost,
and I'm happy to be joined
today by Sheila Moore.
Welcome, Sheila.
I hope maybe you can tell us a little bit
about what you do for PNI.
Thank you.
Yes, my name is Sheila Moore.
I'm a licensed clinical social worker.
I've been at PNI for a
little over six years,
and I am a clinical social worker,
so I wear a couple of different hats.
I see clients individually,
group, and do some couples work.
And then I also do some programming
for the Pacific Movement Disorders Center,
specifically for people who
have Parkinson's disease
and their care partners.
And then sometimes I do
some resource and referrals
for clients who find that that
kind of support is needed.
And I think today we're
going to talk about
particularly that caregiver aspect of it
and some of the couples work you do.
And maybe you can describe for us
when somebody gets a
Parkinson's diagnosis,
often that has ripple
effects throughout a family.
and particularly was thrilled
to be able to have some time
to shed some of the
spotlight onto care partners.
It's really very common for individuals
who are diagnosed with Parkinson's disease
to also the impact felt not only by them,
but by their care partners or their wives,
husbands, adult children, family members.
So it's not only the person
who's been given the diagnosis,
kind of going through the preliminary,
some of the assessment prior
to diagnosis can be daunting
and fatiguing and exhausting,
not only for the person who's concerned
about their own health,
but also for the person
who stands or is next to
them concerned as well.
So the opportunity for care partners
to have some attention
is really important.
It impacts not only the
person who's diagnosed,
as most chronic health issues do.
So it's good to look really
at the family, I think,
and really empower the person
who has Parkinson's disease
and their care partners.
I think that's what we are about at PNI
and specifically at the Pacific
Movement Disorders Center.
And you have some grants and work closely
with the National Parkinson's
Disease Association.
with the American Parkinson's
Disease Association,
which is a national organization.
And through them, we've received
grants before the pandemic
to be able to provide support,
education, and programming,
not only for those who
have Parkinson's disease,
but for care partners as well.
Part of the work that I do is funded
because I'm an information
and referral specialist
for the APDA.
So that's how the circle
kind of intersects
in terms of PNI and APDA.
So I think it's a very strong partnership.
or the caregiver is often
on a parallel path with the patient.
And maybe talk a little
bit about what you mean
and what people go
through on that journey.
That's right.
It is a parallel path.
Those who receive a diagnosis
of Parkinson's disease,
it can be a jarring, unwelcome diagnosis.
Oftentimes people may
have other family members
in their family who have been
diagnosed with Parkinson's.
Oftentimes it feels as
if it's out of the blue.
And so it's a lot of information
right from the beginning,
a lot of things to-
Well, opportunities to make an impact
and to make some changes in
order to really help support
through any progression related
to the diagnosis of Parkinson's disease.
And so right immediately,
at least my experience
as a clinical social worker
working with families,
is that the person with the
diagnosis kind of reeling,
trying to get their heads wrapped
around this new diagnosis.
Sometimes it's a welcome relief.
Sometimes it's something
that is really, like I said, it's jarring.
And so they're going through
a lot of information,
making sense, like I said,
trying to wrap their hands around it.
And then right next to them
is their care partner as well,
who is equally trying to make sense,
trying to figure out where
they fit with all of this.
Will the roles change?
They have their own emotional
impact with this diagnosis.
Some of the common questions for both is,
"Do we tell?
Do we not tell people that the person
who has Parkinson's has
been given the diagnosis?"
And right from the beginning,
I think it leaves a lot of questions
and there's a lot of uncertainty
about what comes next.
Oftentimes we talk about
for both the person
who's been diagnosed and
if they have care partners
or some family member who's there,
it could be really great friends too
who are there in alignment with them,
thinking about how much
do we look down the road
to what the future might hold,
because sometimes it can
be daunting and scary.
And one of the things that Dr. Petrossian
at the Pacific Movement Disorders
Center often talks about
is that when you see one person
with Parkinson's disease,
you see one person with
Parkinson's disease.
It's very intimate, it's personal,
it's like to a person,
it's like an N of one.
So it's hard to look down.
So what ends up, the
road that people get on
is really one of changing lifestyle,
of changing diet, of
acclimating to medications
maybe with different
timing, and that's a lot.
And then right next to
them is the care partner
who's also trying to figure
out how this all works
and how they can be supportive.
And I was thinking this morning
of some of the care partners
that I've seen, and I remember
one care partner saying,
"My husband," we'll call him Bob,
"Bob's been diagnosed
with Parkinson's disease."
But the holidays coming up,
and people come up and say,
"Well, how's Bob doing?
How are things going?"
And she says,
"I'm happy to talk to them about that."
But she said,
"No one's asking about me.
No one's asking about the
impact that this has on me."
And it really is.
I mean, it impacts everyone,
particularly if there's
a husband and wife,
the person who's a father or a mother
and their adult child,
it's very impactful.
And so that parallel process
of concerned about changes,
concerned about needing more help,
concerned about what's going to look like
for the person with PD,
we think about that.
We think about that for them,
but the care partner also
has that parallel path.
And at some point, or it
doesn't always have to happen,
but oftentimes what happens
is the process is parallel
because it will not always
be the same for them.
It's really different.
It's similar, it's parallel paths,
and the care partner can
oftentimes start feeling
more and more and more if
things begin to change.
in particular, a woman named Mary,
whose husband Charles
has Parkinson's disease.
Mary shared the story
of the wonderful life she
and Charles had together
and how Parkinson's upended
things for both of them.
and we had both been married
before and we were currently
not in relationships, of course.
And so when we first got together,
we were very much peers
and we each had, in
our previous marriages,
had been in relationships
where we had to mentally take
care of the other person,
not because they had an illness,
but because they were dependent.
And it was sort of natural
for us as psychologists
to choose, because he was one too,
so natural for us to choose
people that needed help.
So we vowed that we both said
we never wanted to take
care of anybody again,
and what we really
appreciated about each other
was our peer relationship
and our mutual independence.
So we had at first just
this amazing life together.
We stopped working so we could travel.
We traveled maybe four
months out of the year,
and we both started doing
different art forms,
and we went to art, concerts,
hiking, snowshoeing.
So extremely active,
wonderful, wonderful life.
And Charles was very smart, very funny.
We had lots of social occasions,
and so this very rich life.
And after about 15 years,
he started having these strange symptoms,
and we didn't know
anything about Parkinson's,
so we wrote 'em off to other things
like a lot of people do,
like lost his sense of smell.
That was maybe 20 years ago.
He had been punched in the nose
and had a deviated septum, so we said,
"Oh, it's because of that."
And then he got a little
tremor and we said,
"Oh, that's essential tremor."
And he'd be walking and
veer off to one direction.
He'd develop allergies, skin problems,
nausea, and then these
things would go away.
So they'd come and they'd go,
and it took about two
years to be diagnosed.
Slowly over time, of
course, it's totally taken
over, and now we really don't
do any of those wonderful
things that we did before.
Our life is a lot about Parkinson's,
although we still have a
very active social life
because it's such an isolating disease,
and it really helps me a
lot, and I think it helps
Charles a lot too, to see
other people and get out.
And then we have a lot
more friends now too,
because we have all these friends
from the Parkinson's community,
some of whom we've formed relationships
with outside of the support
group and that kind of thing.
So one of the things
that Sheila's taught me
is that this is obvious,
but yet saying it is
supportive and helpful.
Parkinson's is so hard
because first you have all the physical
and it becomes more and more difficult.
A lot of the ways that
I now have to physically
support Charles are very
hands-on, hard work,
sometimes lifting him
into bed and dressing him
and bending and stooping
and doing really everything.
But then along comes
the cognitive decline.
So it's kind of like a one-two punch.
And so over time, it's made Charles,
and I know it does other men too,
from the support groups and
other stories that I hear,
very vulnerable in a way
that he wasn't before.
And the people with Parkinson's
typically have a lot of shame
because they can't do
what they used to do,
and they can't do projects
around the house or work.
And for me and the women
in the support group,
our spouses are all men,
so they all have this issue
of it affecting their masculinity.
And so many men are human doings.
And so when they lose their ability to do,
then there goes their self-esteem.
They do feel ashamed and
they're physically vulnerable,
cognitively vulnerable.
So what started happening
in our relationship is that then leads to-
The cognitive issues lead to
conflict in their relationship
because I might say
something that he needs to do
or he might do something
and it ends up being a mess
and I might complain about
cleaning up the mess or whatever,
and he'll take it as a criticism
and that I'm disappointed in him,
so then he'll get defensive
and be harsh with me and blame me.
And that'll trigger something in me,
of course, in my humanity.
And so I'll react back, and
then here we are in conflict.
And that one of the men
in the big support group
with caregivers too,
he was talking about how
he and his girlfriend
have these big conflicts
they didn't used to.
And he says, "It's another,"
this is probably PG-rated,
"it's another effing
Parkinson's argument."
So it's not just us.
I recently asked the
women in the support group
if they're having a lot more conflict
with their husband, and they said, "Yes."
so many of the notes
that come up for people
with Parkinson's and their care partners.
Many people who receive a
Parkinson's diagnosis want
to stay at home, if at all possible.
That can often be a very helpful thing
to stay where you're familiar,
where you're comfortable.
But Sheila notes that that
does put a lot of burden
and strain on the other family
members who are in the house.
We all want to make sure
that our home is a safe
place and we want everyone
to stay at home and be cared for at home.
And to your point, when that is the goal,
then that not only impacts the person,
but their care partner.
And the care partner can be a
spouse or an adult child often
who either is providing the care directly
or coordinating care, whether
it's doctor's appointments
or starting to maybe have
people come into the home
to assist with different tasks and things.
But yeah, for care partners particularly,
this can be daunting.
And I have a support
group for care partners,
those who are caring for someone
with Parkinson's disease.
And I like to think about
the kinds of services
that we provide as empowering
these care partners
so that they can be better able
to navigate some of the changes,
kind of ride the roller coaster
of the emotional changes
that come with this,
find a balance between how
things were and how things are
and how things might be,
and then be able to talk about
opportunities for planning,
maybe planning care.
And that's something people
do in partnership, right?
So the person living
with Parkinson's disease
and care partners.
So the focus here is for care partners,
but thinking about all
those pieces for them,
because that becomes really important.
If something were to
happen to care partners,
particularly those who are super
instrumental who are living
with someone who has PD, that
can herald a lot more change.
So we always keep our eye,
I feel like my job
especially is to keep my eye
on care partners and help
them through all of this,
help them navigate, help them communicate,
help them do those things.
of what it's like, what
some people have experienced
or what they've said?
I love that story you just told
about the woman saying how
people don't really even notice
or think that she might have an issue
with her while her
husband has Parkinson's.
Because the focus is so much on the person
who's been given a diagnosis.
Yeah.
after a diagnosis, it
really is a partnership
and the care partner and the person living
with Parkinson's disease
are sharing information,
they're trying to
navigate, they're working
on issues of communication
because it becomes,
for me, at least from my perspective,
communication becomes
so important for both.
"This is what I'm comfortable doing.
This is what I'm not comfortable.
This is where I'm afraid.
This is where I feel
confident," and that can come
from the person who's been diagnosed.
I think that's equally
for the care partner.
There are things that
they might be afraid of,
things that they're concerned about.
They might be concerned about finances.
They might be concerned
about planning or the person
who has been diagnosed is thinking about,
"How am I going to get through my day?
How am I going to make sure
that I get to do the things
that I've always done with
this kind of a diagnosis?"
So for care partners particularly,
so that communication become
really important, right?
And at first it's a partnership,
and then sometimes there's some changes
because the Parkinson's
disease could really affect
movement, that there does
become some shift in role,
in responsibilities, and
sometimes it can start shifting
and changing like the care partner.
One says, "I'm noticing
that things are shifting.
I'm doing more things."
And the other care partner
who's also in the group says,
"I'm kind of doing it all.
I'm doing the finances.
I'm doing the coordinating
of things that my husband
or my wife used to do, and
now that's falling on me."
And so I remember one time specifically
a care partner said, she said,
"I have to always really focus
on the balance in this right now for me.
I'm really concerned about my husband.
I see that things are changing,
and I have to make sure,
because in the past, what
I do, I'm known to do,
is that I overcare for him
and I undercare for me."
And so it's that undercaring
that becomes really the target
for the PD community for care partners
who might then become
caregivers at some point,
but the partnership initially.
So getting kind of a track
record, getting the balance,
starting to know what it
feels like to make sure
that I'm included in
this, that I matter too
for care partners
becomes really important.
And I often talk to care partners
because we say that, right?
"Put on your oxygen mask."
And I think, "Well, what
does that mean for you?
What is an oxygen mask
for you specifically?"
It can be just the same way
that Parkinson's disease shows up
in a very specific way to a person.
That oxygen mask for care
partners is to a person.
When I talk about self-care
for care partners,
sometimes people kind of roll their eyes
and I had one care partner say to me,
"How many mani-pedis can I get, Sheila?"
And I was like, "Well, I mean,
we think about that in
terms of self-care, right?
Yes, right."
But the added dimension is really caring
for yourself, saying, "I have a limit."
For example, sometimes nighttime
sleep can be disrupted.
So care partners end up awake
with the person who has
Parkinson's disease,
and it doesn't have to be that
they have a tremendous need.
That could be down the road, but often
it could be that they're just
having a hard time sleeping.
They may be restless.
They may have these movement
disorders and changes.
And so being able to say,
"Maybe tonight I'm going to go sleep
in the guest room for
now so I can get rest
because rest is such an important
piece for both parties."
So really kind of developing that,
"What is the oxygen mask for you?"
It certainly could be
going to get a mani-pedi,
but it could also mean,
"I need to make sure I get sleep.
I need to make sure that
I'm not skipping meals
to make sure you have your
meals and your medicines.
I need to make sure that
I'm not knocking myself out
and getting you to all these
great engagement programs
that the community has for people living
with Parkinson's disease
and care partners.
But where do I strike a balance
to say the threshold is
here, my line is here,
this is how much I physically,
mentally, emotionally can do."
And that's what I consider self-care.
That's like the oxygen.
And for many people, it's hard.
It's hard, particularly
when you're seeing your
partner change and you want
to be there and you want
to be supportive, to say,
"You know what? I need to support me too."
It can be a challenge,
but I can't even stress
for the care partners who might be tuning
in how important it is for
them to think about themselves.
you've told me you have a top 10 list
or a list that you give to care partners?
I have a top 10 list for
the empowered care partner
because I think that really
it's about empowerment, right?
We work so hard, the community,
everyone together for people
who have been diagnosed
so that people can live well with PD,
and we want that same live
well for care partners,
become empowered to be able
to move ahead as a partner.
So my top 10 list is, and
I'll just read them out,
it's the "Top 10 Tips for
the Empowered Care Partner."
And the first one is to know
what resources are available to you.
Information is power, and that's true.
So to know what the information,
find out about Parkinson's disease,
and find out what resources are available.
The second is to learn
to navigate the changes.
Changes are inevitable
for all of us, right?
Change is inevitable.
That's the one thing that we can count on,
and many of us don't like to hear that,
but that's the one thing
that we can count on.
So how do you navigate this change,
not only with your partner
who's been diagnosed,
but for you separately?
How can you navigate?
What do you need to think about,
both in terms of, sometimes
it's in terms of planning,
it's in terms of your own
emotional needs and well-being,
it's how do you pull
in family and friends,
things like that.
And the third is honoring your process.
It's talking to care partners about
what the changes mean to you,
the things that are happening,
what's the impact in their lives.
Can care partners-
I think it's so important for them
to have room to be able
to feel the changes
and be able to feel the
feelings as these changes occur.
Fear, anger, sadness, joy,
gratitude are all part of
it, like it all belongs.
There's no problem in
any of these feelings,
but the important thing for me
as a clinical social worker
is to create a safe place
for care partners to be
able to feel these things,
that there are strengths that we all have.
We all come to these points
in our lives with a history
of getting through some
pretty serious issues
in our lives and succeeding
and making it through.
So build on those strengths,
considering resilience,
all that you bring to this moment.
And then I really feel like
it's important for care partners
to be more attentive to
what they may need now.
And I think we talked a little bit
about that, how important it is for them
to consider themselves there.
how she manages to stay
strong and positive
in coping with some challenging times.
to do is really do a lot of work on myself
in terms of being aware
of what I'm thinking
and the stories I'm telling
myself and the perceptions
and reminding myself that it's
the disease and it's not him
and allowing difficult
feelings like grief and sadness
about all the things that
we've lost and are losing still
to be gentle with that with
myself, to not stay in it.
There's a quote that I really,
really like that is said,
I think it was said by a
man named Joseph Goldstein.
He said, "How you live your
days is how you live your life."
So I refuse to have miserable days.
So even though I might have
a lot of difficult feelings
about it, and sometimes,
and people in the support
group talk about this too,
we feel angry at our husbands
because you're expecting them
to respond the way that
they've always responded
in the past and they don't,
and you know rationally
that they're not going
to, and that they can't.
It's not a willful thing at all,
but still just being a
human being, and that's one
thing Sheila reminds us
of a lot is our humanity.
So in our humanity, we
get impatient, we get mad.
So I just try to leave the scene,
do my own kind of inner work,
use Parkinson's as a harsh
but still a teacher and try
to become a more patient,
calm, peaceful on the inside person,
which is also a work in progress, so.
And having a lot of
compassion for both him
and for me is really,
really important too.
You go through, I think,
every human feeling in the
book as this goes along.
So taking breaks, getting away.
with an important point
about communication, both
between the care partner
and the person living with Parkinson's,
and then all the
interactions with friends,
family, and even doctors and nurses
and other members of the care team.
the power of communication.
And sometimes we do that just in general
with our mates or our family members.
We take shortcuts or we take inferences.
We don't really slow down
to really think about how
and what we're communicating.
So communication does,
I think particularly
with Parkinson's disease,
when someone's been given a
diagnosis, becomes a power tool
between both the person
who has Parkinson's disease
and the care partner with
family, with friends,
most certainly with the
medical or care team,
and then with service
providers, all about health
and being able to communicate
what it is you need,
what is you like, you don't like, things
that you'd like to see change.
So really important in terms of that.
with Parkinson's disease doesn't want
to be too much of a burden or doesn't want
to always say what's going
on out of fear for that.
And by the same token,
maybe the care partner
doesn't want to always say
or is afraid of putting
too much on the patient.
That's really insightful, Dan,
and an important point because it's true.
It's true.
And how to navigate that fine line.
I think sometimes I
consider it a fine line.
What we see and what other
people see can be really helpful,
but how do you do that?
as a mental health professional
to help people navigate that
or maybe once those situations pass,
they can get together and talk about that
and how they can better
address that in the future.
Yeah, being clear and
having an opportunity
and a safe environment to be able to talk
about what it is because
oftentimes it does boil down
to fear, fear of losing,
fear of losing capacity.
Someone may never, but the
fear factor that enters
and how it manifests itself
in getting through the day,
missing a dose of medication.
about how Charles' Parkinson's
disease created conflict
in their relationship and how, thanks
to some insight from
Sheila, Mary has found a way
to improve their communication
and minimize the conflict.
who wrote "Man's Search for
Meaning," has in there, he says,
"There's a stimulus and a response,
and in between the two lies your freedom."
So how that applies is say
Charles gets defensive
and lashes out at me.
In my humanity, I might have like
a instant like "grr" response back.
But if I pause and I think about,
"Well, do I want to
escalate this situation
and make it harder on both of us
and have increased conflict?"
And sometimes the answer will be "yes,"
but then I also have a choice to not,
just to leave the room, breathe
and do some things to calm myself down.
And I might still be upset,
but I'll be making a
choice not to react back.
So that's been invaluable
in managing conflict, so.
That's the freedom.
Learning to respond, not react.
So the freedom is if I react back,
I escalate the situation,
I make it last longer, I contribute
to both of us feeling worse
about it and it's very painful.
Or do I calm myself down,
remove myself from the situation
and choose not to react and
then the conflict can cool down
and become calm and it's a lot easier
to continue having a nice day or evening.
And it'll typically happen at night a lot
when we're both tired and
I'm running out of patience
and I'm exhausted and he's tired too, so.
any people in a relationship.
You don't have to have Parkinson's
to be able to get some
wisdom with that advice.
And we did have, before Parkinson's,
we rarely had conflict
in our relationship.
So neither one of us had
children and we weren't together
in that time of life when
couples have so many things
that are challenging to deal with kids
and work at the same time
and the relationship.
So it was easy.
And I remember one of
our friends saying to us,
"Do you guys ever fight?"
And we said, "Why would you fight?
That just seems ridiculous."
So of course we'd have
some little conflict,
but they were easy to resolve
and we didn't fight about it.
Something has gotten derailed here.
but he doesn't take it in, but I'll say,
"We have to stop.
Don't go here.
It's Parkinson's.
It's not us.
There's basically nothing
wrong with our relationship,
but this is the specter
of Parkinson's getting in between us."
in communication, which she said others
in her support group
have also experienced.
She said Charles has
something called bradykinesia,
which is a slowness of movement.
She said that people
with bradykinesia become
slower and slower.
It takes longer to do anything,
to prepare for things.
There's a lot of hesitation
and pause because it's hard
to transition into doing something else.
called bradyphrenia, which
is slowness of cognition.
So there's the kinesia,
which is movement and the
phrenia, which is the brain.
And so I'll ask him
something or a question
or something I need an answer.
I need to know what he
wants or what he's thinking,
and he doesn't answer.
And I don't know if he didn't hear me,
if he didn't take it
in, or if he's thinking.
So frequently I have to say,
"Did you hear me?
Did you take it in?"
And then give him time to answer.
So that's hard when you lose
that ease of communication.
And other people in the support
group talk about that too,
that they used to be able
to talk from another room
or talk while you're doing something.
So now it's much more labored.
You have to stop and get
close and make eye contact
and make sure you have attention.
And so we can communicate,
but it's much harder.
It takes a lot of work.
But sometimes he's sharp
and present and funny and I see him.
And he's lovely.
I mean, if you've met
him, you wouldn't know
that we had these struggles,
because that's another thing
that I wanted to tell you that we talk
about in the support
group is, I could talk
about this for hours,
so you'll have to like-
But in the support group,
that people have lost
that ease of communication
with their husbands too,
and that they used to
be able to talk to them
in a different room or while
you're doing something else
and the person can't multitask anymore.
with an important reminder
about planning ahead
just for the short term
so that the person with
Parkinson's and the care partner
know what to expect and are ready for it.
And so exploring what might be
next without looking too far
and staring too long into the future.
So exploring what might
be next in terms of health
decisions, financial checkups,
care options, and engagement and support.
So I like to think of
it as the pre-planning
for both the person who's
living with Parkinson's
and the care partners exploring
and information gathering.
Then the short-term plans,
maybe identifying some
needs that might be changing
and some fact-finding,
what are the resources?
And then long-term plans,
that's looking down the pathway.
And some people are there
and looking down the path
and needing some extra support.
Again, another level of
negotiating and navigating through.
And for care partners, my sixth
tip is find balance for you.
And finding balance is really a practice
and it's very intimate and personal.
Making room for you as a care partner,
making sure that you find this balance
and the balance will change,
keeping this balance,
keeping current and fresh, it's ongoing.
There's no "there" there.
It's really here.
Exploring what works for
you and celebrating the joys
of the day when you can,
because there can be joys.
This is not doom and gloom,
although it certainly is
a chronic health issue
that can be very impactful
and require lots of change.
It doesn't have to be
without joy and gratitude.
I have lots of families that
talk about couples particularly
who talk about some of the challenges
that they have, and this
comes up in communication
in being grateful for one another.
And sometimes these are
opportunities, not always,
but it can be opportunities to get closer,
particularly if you're
working on communication.
But it takes a lot of, I think,
courage to be able to, if you
have one way of communicating,
now you're communicating in a
very focused, different way.
But if each can be vulnerable
and be able to really be
honest with themselves
and each other, it can be really-
And I've had couples who say,
"We've never been closer.
We've just never been closer.
We never thought that
this would be a byproduct
or maybe even a gift
of Parkinson's disease,
a diagnosis like this."
That's beautiful.
Yeah, finding the grace notes in these-
That's right.
That's right.
Because they're there. They're there.
Sometimes we just focus.
We just get so focused here
and the idea just if you
can shift your focus,
shift your frame a little
bit, it can be really helpful.
through the process of grieving.
She has heard the process
referred to as complicated grief
because in many ways she said
she's grieving all the time.
and one's feelings about
that to validate them
to understand that you're losing parts
of the person a little bit at a time.
Charles and I had the opportunity
at one point to travel.
We went to Prague in Czechoslovakia,
and they had a monument to
the survivors of communism,
which was a bronze sculpture
that was about five different
male figures going up a hill.
And the first figure at the bottom
of the hill was an intact, full person.
And at each stage going up the hill,
there's less and less
of the sculpture there
until at the fifth stage
there's just a little
kind of a scrap of metal.
And Charles and I both have thought
about that many times like
a metaphor for what happens.
So you're losing the
person with Parkinson's
and you or the people
in intimate relationship
with them are bit by bit losing everything
that made them who they were.
And so it's really
important to allow the grief
and sadness of that, to
validate it and accept it
and let yourself feel it,
but yet also not stay in it
because it will really pull you down.
So when I came home one night,
I was completely exhausted
after doing this.
I felt like every day I
needed to be at the hospital
for the evening shift
change to help to transition
so people would know how to help him.
And I came home just so exhausted.
All that grief came through.
And I was bringing this
up just to say that,
so I used what I've learned
to do a meditative technique.
I do as one of my coping
skills, I meditate.
And so I felt this
connection to other people
in the world who are suffering.
It's not just me, not just
people who have Parkinson's
in their lives, but sort of the suffering
of the world and just kind
of try to send out love
and compassion to me and
to others and to all of us.
And then it turns into gratitude.
Turns into gratitude for what
you do have and us being alive
on the face of the earth.
And I get a lot of joy from
nature and little tiny things,
and so it's not all doom and gloom.
and family can do for a care
partner and why it's important
for the care partner to accept
the help that is offered.
what a care partner needs
to do is just sometimes
have somebody else come to
the house for a little bit
and just to let them go to
the gym, get a mani-pedi,
go to-
or get some fresh air, go for a walk.
But just whatever, as you say,
whatever that is for that person,
but just to know, I can relax.
Somebody else is keeping an eye on things
and making sure that my partner is okay
and taking the medicine
and everything else,
but just giving a little
space when possible.
Sometimes if you can afford
it, you can have a professional
come in, or if not, maybe
you can just have a friend
or another family member
give yourself that break.
When people offer to help, explore that.
Sometimes we have a tendency
to say just in our own
kind of being independent,
"Oh, no, no, no, I don't need anything."
But when people offer,
"Thank you. Thank you."
Yeah.
And the flip side of that
is you may feel like,
"Oh, I realize it's really
hard accepting help."
But sometimes people are offering
because they want to,
and it really is helpful
for them as well to be of service.
It's just really
they don't know what
would be the most helpful
and sometimes-
That is right.
And sometimes that's what keeps people
from actually being helpful
because they just don't know.
And they themselves might be intimidated
and scared
that they might misstep
or say something dumb.
And so sometimes it's
just a matter of, again,
because it's boiling down
to a lot of communication,
being able to say what
you need and when in a way
that people can, if they're
offering, take them up on that.
That's usually what happens
very early on in a diagnosis.
Care partners start
making these to-do lists,
and the to-do lists can
be long and daunting,
and they can be so long
that you can never get
through it in a day.
So care partners can feel really bad
because they feel like they failed.
And the other part of that
to-do list is that care partners
often never make it on that list.
So I really feel like
some of what I do is talk
to care partners about putting
themselves on the list.
Sometimes it might be lower on the list,
and then inching one's way up
to get up to the higher point
of the list, because it's really
important for care partners
to maintain their mental
health, their physical health,
and it's very easy when
someone's been given a diagnosis
like Parkinson's disease
for everything to shift.
So we're inviting and asking
and encouraging care partners
to make sure that you put
yourself on the to-do list
and inch up, inch up, inch up, inch up.
I say it's a practice, practice,
practice and celebrate at
every time you make a move up.
And so many times in my
support group, people will say,
"You'll be so happy."
They'll say talk to each other,
"You'll be so proud of me.
I did this."
It's that community of
people who really get it.
One of the care partners, she said,
"I used to think that
self-care was an indulgence,
and now I realize that I
need to take care of myself,
not only for me, but for my husband."
She's caring for her husband.
She says, "I'm a much
better partner all around
when I care for myself."
That kind of says it in a nutshell.
So a lot of care partners in
my career, people have said,
"When will I know?
When will I know it's
time to get some help?
When will I know it's time
to think about maybe driving, finances?"
When that question
formulates in your mind,
"When will I know?"
usually indicates that
you are seeing things,
that you are concerned.
Driving is such a hard thing.
It's such a big, big
symbol of independence,
but it's also such a big safety issue.
"When will I know it's time
to maybe have a discussion
about driving or talk to PNI,
Dr. Petrossian or Dr. Diaz about driving?"
but in general, you can do it.
which I think we talked a little
bit about, that impatience,
increased anxiety, restlessness,
and more fears for the care partner,
feeling depressed and not enjoying things,
feeling fatigued, starting to
isolate, like pulling back.
you've hinted at number 10 already.
Actually, that probably
should be the first,
the middle, and the last
in terms of this, that no
one has to do this alone,
and actually more important,
no one can do this alone.
It's just humanly not possible
that family and friends,
support groups and clinical
support, that your medical team,
the American Parkinson's
Disease Association, PNI,
all of us are here to support
both the person living
with PD and care partners.
that PNI offers
in addition to support
groups, including webinars
and programs that provide a
wealth of useful information.
"Everything Parkinson's," that we do.
I think it's on a quarterly basis now.
We work with the American
Parkinson's Disease Association.
They have many signature programs
that are really, really powerful
and have tremendous impact
in the community, both for
those diagnosed with Parkinson's
or living with Parkinson's
and the care partner.
One particular program is
called the PRESS Program.
It's Parkinson's resource.
It's a roadmap for education and support
for someone who has Parkinson's disease.
So at the onset, after a diagnosis,
we're often gathering
people who might benefit,
and we offer an eight-week
course outlining the symptoms,
outlining the motor, non-motor symptoms,
outlining the importance
of exercise, diet change,
lifestyle change, talking about resources,
and then addressing the special issues
that come for care partners.
that she wanted to share with people.
She brought this concept
to us with another quote,
this one from Albert Camus,
"In the midst of winter,
I found there was within
me an invincible summer."
With that as her inspiration,
Mary asks people,
especially those with Parkinson's,
to go easy on themselves,
forgive themselves, and to not feel shame
for something that they cannot control.
all the people I know with Parkinson's,
like I was saying earlier,
struggle with how they feel
about themselves and with shame,
and everything is so effortful.
Nothing's on autopilot anymore.
They have to think about
every footfall step,
posture, everything that they do.
And what's helped Charles,
and I think is, although he forgets,
and I have to sort of
structure him to remember,
is developing his own
compassion for himself,
his own kindness for himself.
And I think that that would help so many
of these living life every
day challenges is just-
And accepting Parkinson's as well.
A lot of people fight it and
hate it and are angry at it,
and that's good and fine and normal,
and you can express that too.
But yet, again, the more
you accept it, like,
"This is our life and this is how it is,
how am I going to find joy in it?
How am I going to find love
in it, compassion in it?"
So that's kind of my biggest
message to everybody, is work
on not only being kind to
other people and your friends
and your loved ones, but
your own self as well.
And Sheila emphasizes that too.
that we talked so much today
about Parkinson's disease,
but so much of that list can pertain
to so many other
caregiving type situations.
When someone's caring for
someone with Alzheimer's disease,
someone with vascular
dementia, frontotemporal lobe,
and multiple, multiple
chronic health issues
for care partners, it's the same.
It's the same.
Take care of yourself
and you're not alone.
Yeah.
Well, thank you so much
for your time, Sheila.
Really great to talk to you.
So grateful for this opportunity.
Thank you.
(gentle music)
with Parkinson's disease
are the same, care partners
and the people who
support them have learned
many valuable lessons over the years.
With so much wonderful advice,
I thought the most useful
recap would be to restate
Sheila's top 10 tips for
the empowered care partner.
One, know what resources
are available to you.
Two, learn to navigate the changes
that are sure to come in your life.
Three, honor your process.
Four, do not underestimate
the power of communication.
Five, it's never too early to plan.
Six, find balance.
Seven, move yourself up
on the to-do list and keep inching up.
Eight, trust your instincts.
Nine, watch for the
warning signs of stress.
10, remember you are not alone.
Those simple common-sense
tips can go a long way
toward empowering you to find fulfillment
in your role as a care partner,
whether for someone
with Parkinson's disease
or any number of other ailments.
Thank you for listening.
This is Dan Fost.
Please tune in next time to
the "Think Neuro" podcast
from Pacific Neuroscience Institute.
(gentle music)