TERRI PEASE, Ph.D., CONSULTANT - FROM CARE PARTNER TO CAREGIVER

In Episode 74, Don Priess and I had an incredible conversation withTerri Pease, Ph.D., an Author, Coach, and Consultant for Spousal Caregivers. As a highly experienced professional in the social services and healthcare industries, Terri has dedicated her working life to encouraging Parkinson's caregivers, to make self-care real, practical, and possible. But really, the same applies to almost all Spousal Caregivers - including those caring for spouses with Alzheimer's.
Terri has has also dedicated her life to working with people who are facing highly stressful situations. Her experience has taught her how to provide supportive and trauma-informed care to those who need it most. When Terri married her husband who had Parkinson's Disease, she brought her wealth of knowledge and experience to bear on caring for him. She trained staff in organizations around the United States on how to offer supportive, empathic, and trauma-informed care. Her professional experience has informed her approach to caregiving, and to encouraging Parkinson's caregivers to make the idea of self-care real, practical, and possible. In addition to her work as an author and caregiver advocate,
Terri's book, "Love, Dignity, and Parkinson's: from Care Partner to Caregiver" (Paperback – October 19, 2022 ), is a great resource for caregivers whose spouse or loved one has been diagnosed with Parkinson's Disease. and are feeling overwhelmed and unsure of how to best care for them without losing themself. The book offers a new approach to caregiving that can help ease the stress and anxiety that come with this diagnosis. In this book, you'll learn how to strengthen your caregiving capacity, maintain peace of mind, and live a less stressful, upsetting, or lonely caregiving life. You'll also find practical tips on how to deal with common experiences like changes in mood, challenging behavior, and communication difficulties. 
Most importantly, Love, Dignity, and Parkinson's will serve as a constant reminder that you are not alone in this journey. With compassion and wisdom, Pease offers invaluable insights into the caregiver experience, drawn both from her extensive professional experience providing trauma-informed care and from her own years as a caregiver to her husband. This book is an essential resource for any caregiver navigating the challenges of Parkinson's Disease or any challenging disease.
Enjoy!
xoxSusie

Terri continues to post information, support, and resources at  SEABURY HOUSE.
You can also connect with Terri on LINKEDIN.

Please support our documentary: NO COUNTRY FOR OLD PEOPLE by pledging a tax deductible donation here on our partner site, The Natio

Support the show

Be a ROAR-ior!! JOIN THE R.O.A.R. MOVEMENT for quality long term care! Visit the No Country For Old People Website for more information.

YOU CAN ALSO SUPPORT THE ABSOLUTELY CRUCIAL PROMOTION OF OUR DOCUMENTARY "NO COUNTRY FOR OLD PEOPLE" BY MAKING A TAX DEDUCTIBLE DONATION THROUGH THE NATIONAL CONSUMER VOICE HERE

Follow us on Twitter, FB, IG, & TiK Tok 💜
Listen on your favorite platform 💜
If you like what you hear
Carter and I just wanted to takea minute to tell you about a
wonderful product I justdiscovered. It's called SOCIAVI.
And SOCIAVI in Latin means toshare and unite. It is the
simplest way for older adultsand people with disabilities to
connect and engage with theirfamily and friends. There's no
username, no password, no loginand no app to choose from. It's

(00:22):
just a dedicated device. It'sthe sociol the C to M connect to
me device it's always on andready to use. And families and
caregivers just install the appon their smartphone. And then
you can just begin sendingphotos, videos, and even have
live live video chats and yourloved ones. They don't have to
do anything. They just love it.
And because all of us must fightelder abuse and work together to

(00:43):
bring awareness to this issuesays the obvious supporting my
efforts to produce my vitaldocumentary, No Country for Old
people. When you subscribe tosociology for your loved ones,
they will donate the paymentsreceived and you can help us
reach our goal while connectingwith your loved ones in the
simplest way CCRB connectinggenerations made simple
globally. To learn more, pleasevisit their website at www

(01:06):
sosiale.com. And when choosingthe payment select the annual
subscription the proceeds willgo to help the production of our
documentary, No Country for OldPeople and I thank you so much.

Don Priess (01:27):
When the world has gotten down, and Alzheimer's
sucks, it's an equal opportunitydisease that chips away at
everything we hold dear. And todate, there's no cure. So until
there is we continue to fightwith the most powerful tool in
our arsenal. Love. This is loveconquers all is a real and

(01:48):
really positive podcast thattakes a deep dive into
everything. Alzheimer's, TheGood, the Bad, and everything in
between. And now here are yourhosts Susie Singer Carter and
me, Don Priess

Susie Singer Carter (02:06):
Hello, everybody. I'm Susie Singer
Carter.

Don Priess (02:09):
And I'm Don Priess and this is love conquers all
calls. Hello, Susan.

Susie Singer Carter (02:14):
Hi, lovely Donald. How are you? I'm lovely.

Don Priess (02:18):
That's what I said today. Today. I'm lovely. Which
says it all. What's up, what'shappening.

Susie Singer Carter (02:26):
Well, we're both wearing black today. We got
the I always wear black. This iskind of my uniform.

Don Priess (02:31):
It's kind of the same every show or the last
show. I actually wear a buttondown black shirt.

Susie Singer Carter (02:38):
Wow.
Interesting, folks. Sointeresting. What's Yeah,
wardrobe talk. I well, I do likesome, some therapy, which

Don Priess (02:47):
Yeah, you do like your wardrobe.

Susie Singer Carter (02:49):
I like retail therapy. I did clean out
my wardrobe last week though.
And and that is therapy tobelieve me, it's therapy. I
mean, it feels so good. Cleaningout and you get and you find the
most amazing things. You'relike, oh my god, I forgot. I
bought that. This one still hasa tag on it. It's crazy. So it's

(03:09):
actually 31 three shirts. Yeah,I've worn three shirts since I
cleaned out my closet that Ididn't know were there. I know.

Don Priess (03:21):
Yeah, it's, it's like our shopping or you
clotheshorse. You only wear oneshirt. So when I say the three
shirts, it's they were all likethis. Okay.
So I didn't know they werethere. Wow.
It's like Theranos. Girl. What'sher name? Thier nose? No, no,
she's going to she's going tojail.

Susie Singer Carter (03:43):
Elizabeth, is that her name? Elizabeth.
Elizabeth Miller? No. ElizabethHolmes. Holmes. That's it.
Holmes. Yeah, yeah, no, thatthat show was fantastic. But she
had a closet full of the samejacket and shirt and wore the
same thing every day. Yes, withher voice like this. She put her
voice down their nose. That's myfavorite imitation.

(04:07):
Anyway, we should get this.
I just I just saw on the viewthis morning, Michael J. Fox.
And he's we just watched hisdocumentary and we just watched
his documentary with you asParkinson's called still and
he'she's still he's still moving. I
mean, it's it's prettyextraordinary

(04:32):
how he's embraced this diseaseultimately. And he's had it so
long and and we have an oddlyenough was the you know, always
well, not oddly, it's the waylife goes the way the world
works that, you know, of course,out of the blue I get a query
about a woman who is a carer orwas a caregiver, and a care

(04:54):
partner for someone withParkinson's which is quite
similar to Alzheimer's incertain ways. You

Don Priess (04:59):
And she has such a great perspective. So, I'd like
to just bring her on Don, canyou introduce can I?
Can I tell you about her? Pleasedo it. Please do it now. All
right. Terry Pease, PhD is anauthor, coach and consultant for
spousal caregivers. She'sdedicated her life to working

(05:20):
with people who are facinghighly stressful situations.
When Terry married her husbandwho had Parkinson's disease, she
brought her wealth of knowledgeand experience to bear on caring
for him. She trained staffs inorganizations around the United
States on how to offersupportive, empathetic and
trauma informed care. Herprofessional experience has
informed her approach tocaregiving and to encouraging

(05:42):
Parkinson's caregivers to makethe idea of self care real
practical and possible. Terryrecently authored love dignity
and Parkinson's from carepartner to caregiver, which
offers a new approach tocaregiving that can help ease
the stress and anxiety thatcomes with this diagnosis. In
addition to her work, as anauthor and caregiver advocate,

(06:04):
Terry continues to postinformation support and
resources on her website. Andwith that, we are so honored and
delighted to welcome TerryPease. Hello, Terry.

Susie Singer Carter (06:14):
Hi, Terry.
So nice to have you

Terri Pease (06:17):
Hi Don. Hi Susie

Susie Singer Carter (06:19):
It's very nice to have

Terri Pease (06:20):
I am very delighted to be here.

Susie Singer Carter (06:22):
Thank you, thank you, it's, it's, it's a
great, a great conversation thatwe're going to have with you
because it's really aboutcaregiving. And, you know, we
we've been focusing a lot,obviously, because it's love
conquers all on Alzheimer's.
But, but Parkinson's is also inthat in, you know, if you're
going to bundle kinds ofdiseases that you know, this,

(06:46):
there's a lot of similarities,even though it doesn't manifest
physically the same way. Butthere's a lot of similarities.
And I think that, you know, byyou learning, and really, really
immersing yourself in this worldof caregiving, that you you have
a lot to offer, anybody that isreally caregiving and care
partner, which I'd love for youto also define the difference,

(07:09):
because you have said earlierthan when we were talking before
we started recording about thisnew role that you're taking on
as a care partner, as opposed toa caregiver. So I think that's
interesting. But tell us alittle bit about yourself and
how you come to this interviewtoday. What brings, what's this,
the journey of your, of yourexperience?

Terri Pease (07:35):
Well, it's funny, I was talking about this with
someone else earlier this week.
And I come to this with acombination of experiences, I
was trained as a developmentalpsychologist, and I was a
college professor and worked formany years in a variety of sort
of social service settings whereI was supporting the people who
took care of trauma survivors,essentially. And so it's been a

(07:55):
lot of time just thinking aboutthe ways in which things happen
to people and the kinds ofsupport and help that people
need, and what the helpers need.
So I've always had that sort ofdouble layered focus on the
person who experiences thetrauma or the, the difficulty,
and the person who's doing thehelping. And that's always been

(08:17):
sort of my attention. So I'vedone that. I've done that a lot
of different kinds of settings.
And then, late in life, I had avery happy second marriage. And
I married someone who told me

Unknown (08:32):
right away, that he had Parkinson's.
And so I met my husband knowingthat he'd had Parkinson's for a
good long time. AndI have to confess, I tried
really hard not to look green.
Because if you don't, it's hardto say yes. And someone who had
a condition that I knew verylittle about, but I knew it was

(08:54):
not a zero, it's not level. Buthe was my guy and
you off my feet, so to speak.
And so we ended up marrying, andI became a caregiver. And I took
care of my husband whoseParkinson's first was moving
around kind of slowly, and thenas they say, started to gallop
along to the point where it was,you know, the most pervasive

(09:17):
thing that he was experiencing,and the most profound part of
our relationship was my movingfrom wife, to care partner, and
then to caregiver and took careof him for the rest of his life.
And then after he died,I was at a kind of a wellness
retreat, as I was asking myself,what's next to me? And the

(09:38):
question came up in the courseof the activities of this event,
can you have a happy andsuccessful marriage with someone
who has dementia or anotherdegenerative disease? And I
wanted to know the answer tothat because I felt like it had
that kind of marriage. And sothat led to my writing

Susie Singer Carter (10:00):
This book.
Oh, that's amazing. It's so in,in the zeitgeist right now with
Michael J. Fox and going, youknow, and watching his his wife,
Tracy, Poland, you know, in,like he says in his documentary
in sickness and in health, andshe's been there the whole time.
And you know, and it's been along disease, like my mother's

(10:20):
Alzheimer's was 16 years of adisease. And, and I mean,
Michael has had it since 1991.
His has progressed very slowly.
But now it's, you know, it's,it's really at its peak, from
what from all signs, it lookslike that. So it really is
extraordinary, you know, thatyou and, and are modeling that

(10:40):
kind of relationship.

Unknown (10:46):
Yeah, he has lived an extraordinary life before he was
diagnosed. And he's lived anextraordinary life since the
diagnosis.
And a lot of people are thinkingabout Parkinson's disease. And
one of the things that I noticedI looked at an interview that he
did just the other day,Michael J. Fox seems not to have

(11:07):
the primary cognitive effectsthat are so common and
ultimately in as people age withParkinson's, up to 80% of people
who have Parkinson's willdevelop a form of dementia,
Parkinson's, dementia, and hedoesn't seem to show that he
seems on the ball sharpcognitively, probably pretty
much as he had ever been.

Susie Singer Carter (11:31):
For many people, it's different than
that. And I think it's reallyimportant to talk about the ways
that Parkinson's changes, thekinds of cognitive functioning
that a person has. And also,most importantly, I think the
way Parkinson's affects thekinds of relationships that that
exists between a person withParkinson's and their caregiver.

(11:53):
I certainly didn't know about itwhen I met married my husband,
and especially a caregiver, thatthat is, is a spouse. You know,
it's so different. And, and I'veseen that time and time again,
with, you know, married couplesthat are experiencing
Alzheimer's, where there's a lotof denial, where they don't,

(12:13):
they wouldn't want to, to leaninto it, because it's too hard.
And you know, and different fromyou. They didn't marry into it,
it just occurred. So in somerespects, yeah, you, you were
rolling up your sleeves, youknew kind of what you were
getting into. But obviously, youhad no idea because you hadn't

(12:36):
experienced it, but you knewthat something was coming.

Unknown (12:41):
Right, I knew something was coming. And I definitely
said yes to the challenges thatwere going to come with this
marriage. But then, as MichaelJ. Fox says, or his wife says,
when we marry, and we say, insickness and in health, that's
really saying, all of us, atsome point will experience an
aging. And so that that's acommitment that any person

(13:04):
makes.
Did you discuss ahead of time,the the commitment, the as you
going to be become a not only acare partner, but then a
caregiver was just discussed?
And you know, he probably didn'tknow we don't you never know
where it's heading. But how, howthe depth of it? Did you discuss
that ahead of time? What werethe expectations going in? I

(13:25):
don't think either of us reallyknew the way that Parkinson's
would affect our marriage, Iassumed that it was the physical
disorder, shaking, sticky feet,the difficulties with mobility
and stiffness. And because I wasfamiliar with people with
disabilities, and it had peoplewith disabilities in my life,

(13:46):
before I knew I can do this,this is not too hard for me. I
did not expect the changes thatlead to Oh, for example, that my
husband could no longer feelconcern for me, empathy for me,
because Parkinson's and I thinkthis is a way in which it
diverges from Alzheimer's isthat it specifically seems to

(14:09):
focus with its reduction ofdopamine, it reduces the
capacity for empathy. And I willnever forget, I had had a
fingered scary and seriousdiagnosis, which fortunately
resolved and hasn't left me withany long term effects. But when
I got the diagnosis sometimeswhen treating for this disorder,

(14:30):
he looked at me one day, and hesaid, You know, I know I should
care. But I don't

Susie Singer Carter (14:38):
hate. It sounds awful. And yet he wasn't
saying it in any ugly way atall. He was so puzzled by that,
that he couldn't find it inhimself. That's so interesting.
I we have a mutual friend whosehusband was in a car accident.
And for a very long time, hehe's he since regained a lot of

(15:00):
his cognitive deficienciesdeficiency that that was the
result of the accident. Butwherever the head injury was, he
was lacking empathy. And he knewit just like what you're saying.
And he was like very nonplussedabout it. He was very, you know,
just rational and said, I don'tknow if I can love you anymore.

(15:21):
I just don't feel it. And it wasvery, you know, and then I
remember her saying, it was ahuge problem. And, you know, the
differences is, she had hopedthat, that he would regain it,
which he did. Whereas, you know,knew that it was only going to
get exponentially worse, is thatcorrect? It does. I think that's

(15:43):
right. I mean, it changes overtime. And as Parkinson's
progresses,

Unknown (15:49):
through the whole configuration between spouses or
committed partners, changes, asthe person becomes less able to
engage at all verbally, andbecomes more clearly dependent.
For everything for all the ADLs.
And for all of the moment, care,the relationship, I can interact
with, sorry, I should sorry,that's a bit of jargon, it's

(16:12):
activities of daily living, allthe stuff that we do, you know,
cleaning up, washing dishes,washing our hands, feeding
ourselves going to the bathroom,all of those things. And people
lose the ability to, to managethose.
Soyeah, I mean, it's a hard thing
when that relationship shifts,and you know, that they're just

(16:34):
not there. I'll never forget theday that I'd speak in front of
the bathroom mirror. And I justlooked at myself in the mirror,
and I said, you know,he has nothing for you.
And it was heartbreaking to makethat realization. But then it
was also freeing, because once Iunderstood and as I came to

(16:57):
understand that this was part ofwhat Parkinson says, done to his
brain, and his capacity to loveonce I understood that it freed
me from looking for. Right, andthat was a great relief, because
then I wasn't feeling hurt.
Every time he, you know, didn'tsmile. Did you embraced it, you

(17:20):
embraced it? Is Can I ask youjust to

Susie Singer Carter (17:24):
just a detail on Parkinson's, because
I'm not that familiar with it.
But in terms of that kind of,you know, like with Alzheimer's,
you get these, there is a lackof, of empathy. It can be it can
manifest that way. We're, youknow, it's really their world
almost like children. Right. Andthey don't see outside of that.
But at but but what we live foras caregivers of someone with

(17:45):
Alzheimer's, are those momentsof lucidity which do happen.

Unknown (17:52):
Right? So does that happen in with Parkinson's? It's
different. I mean, first of all,people say, and I think it's
really true, every part of thiscase is different, different,
but in my exists, talk about myexperience. And maybe we can
generalize from that. But in myexperience, the losses were
spotty,and inconsistent. So that even

(18:13):
though there were some areas inwhich my husband could do very
little for himself, I'll giveyou an example. We went out, we
bought a sailboat, we're aboutto give it away. And so he was
talking to the young men whowere fitting up this boat and
getting it this little silver,getting it ready. And he got
involved in a very complexconversation about the wind and

(18:33):
the sails and things that arebeyond my understanding. And he
was his regular sailor cells.
But he couldn't really find hisway back to the car. And so
there's that kind ofinconsistency where he's there.
And then he's, he's conducting,that I'm talking to all people
with Parkinson's. I think thesimilarities, the disorders are

(18:57):
so individual that rather thantrying to separate them and say,
Well, this is one or the other,the responsibility for the
caregiver is pretty much thesame. Whatever the label is that
the neurologist put on thedifficulties the person is
having to be present, to beengageable, to be engaged, to

(19:17):
step back and step in

Don Priess (19:23):
that kind of nimbleness that's required to
anyone who's helping somebodywho has a kind of dementia.
Right, right. My my mother,right was just diagnosed with
Parkinson's about two years ago.
She's 89 And they say it'sreally not progressing much
right now. Thank God, but Inoticed little J and my brother
and sister and it was oh my god,I can't believe mom said that or

(19:46):
acted that way or is acting likethis, and I was like,
This is not you know, we have tobe, you know, ready for anything
we don't know and like becauseit does manifest differently.
In between for everybody. Imean, just again, without we
have, I have no real knowledgeof it, you know, and you going

(20:09):
in with no real knowledge ofeven though you were, you know,
caregiving was your expertise,it's so different. And I think
it's just being staying in tunewith what's going on and not
looking for, oh, that, you know,saying, you know, not trying to
find a reason, you know, whatthe reason is for that change in
behavior. It's not because theysuddenly are, you know, this or

(20:33):
that, that it's not that theirpersonalities changes due to the
that disease. And it's sodifficult because it does
manifest differently witheverybody. You know, I look at
Michael J. Fox, that's one thingyour husband was another thing,
my mom is another thing, andthere's a million different
ways. So I guess it's just beingable to just roll with the
punches and know that it's notnecessarily them. It's the

(20:55):
disease. And I think that that'shelpful when, when having to
caregiver, for somebody, that'sreally true, being able to, I
use the word before nimble,which means to, in my mind, to
be able to just let it come asit does. And respond to it in
the moment. It's something thatI've learned recently, and then

(21:15):
I've been working on and talkingwith, with other people about is
that actors who learn improv,learn to say, yes. And and there
are people talking about that.
Just say yes, and there's a goodTED talk about it. And that is
as a response to what comes byas a person has dementia and

(21:37):
presents you with?

Susie Singer Carter (21:43):
You're not my daughter, what did you do
with my daughter? Exactly,exactly. That's beautiful. I
come with a an actingbackground, and an improv
background, I did it for a verylong time. And so that makes so
much sense. That's a beautifulway to frame it. You know, I was
trying to think of theterminology when you were
talking about your husband, youknow, move getting into his, his

(22:06):
sailor self. And that, you know,is cognitive reserve, like we
have, everybody has a cognitivereserve, like my mom was a
singer. So, you know, you know,she couldn't remember anything,
but you, you start singing, youknow,
our love is here to stay, andshe's on it, you know, and so
that's her cognitive reserve,whereas your husband had this as

(22:30):
one of his cognitive reserves,right? So it's really, really
imprinted. And so that's that itand that does get very
confusing. Because the feet,they they appear to be
themselves.
Until they're not,not moments. Yeah.

(22:51):
Especially because you think theMP is always missed. So exactly.
Where are you? And it's gonethat quickly. Yeah. So how did
you write that? And how long?
Let's let me back up. How longdid you have a marriage? Really?
You know, when we were married?
I count on my fingers. 11 years.
And I would say that Parkinson'swas the third party in that

(23:12):
marriage for the last eight ofthose 11 years. So you had about
three really good years was asymbiotic kind of relationship.
And then then it startedchipping away. That's right.
Wow, you your debts quite ahero. And that's quite

(23:33):
a task you took on that mostpeople I don't think could have.
I mean, you're very special.
It's very,

Unknown (23:41):
I don't, I don't feel like it's something special so
much is that this was justworking. And we found a way to
still betogether, as he changed. And one
of the things I had to learn asa caregiver is that the job of
meeting him became more and morea one sided job in, at least in

(24:02):
our fantasies. A good marriageis give and take and give and
take. But firstly, my experiencewas that and that's what I said
to myself in the mirror, there'sno give. It's just received. And
this is just coming to me as I'msaying, this is a difference
between my holding back and histaking, and my being ready to

(24:25):
offer so that he can receive.

Don Priess (24:31):
Right and maybe that's a way of thinking of
dementia caregiving, the morethat we can offer what the
person can receive. Did you everbecome resentful? And if so, how
did you deal with thosefeelings? I mean, what are you
guilty for being resentful? Ormaybe you never were resentful
for the lot you were in.

Unknown (24:51):
Sync I still resentful.
I've said to other people thatthere was never a day when I was
sorry to have married him. Andthere were days when it was
hard. It was hard.
You know, enough to keep me youknow, in tears. And yet, I was
never sorry, I never felt thatit was so the state to marry my
husband. And I can't I mean, Iknow that plenty of situations

(25:12):
people do feel that they made amistake by by joining in on a
marriage to someone who hasdementia such as Parkinson's or
Alzheimer's or some other formof dementia. And I have
certainly advised people who arethinking, I fall in love with
this person. He's gotParkinson's, what should I do?
Should I marry him, I love him.

(25:33):
And I think it's reallyimportant. And part of my sense
of responsibility is to say,these are the facts as I know
them. These are the ways thatyou can inform yourself. And in
fact, I even write about that inthe last chapter in the second
to last chapter of my book,where I talk about the fact that
you are free to say no.

Susie Singer Carter (25:54):
And I firmly believe that you can't
really say a meaningful Yes,unless you feel free to say no,
even to something as central ascaregiving. Also, I think,
what's what's different and setsyou apart, maybe I'm wrong, is
that, you know, I can imaginesomebody who's had a long

(26:15):
history, you know, you gotmarried, you've been together
for 20 years, 25 years, and thenthey contract Parkinson's, and
now you've got all this historyto carry you. Right. So you made
history in three years. Andthat, and that was your, that
was your base. And that's why Ido think it's extraordinary,

(26:38):
because, you know, youyou had to really live in the
moment and, and really make thathistory and, and, and make it
the value that you wanted out ofit. Because, you know, it really
is I mean, I know that I hearwhat you're saying and that you

(26:58):
don't think you'reextraordinary, I think you are.
And I'm a very, I'm a veryempathetic person and very
giving like I really caregivingfor my mom for the whole time.
But I still think as a couple,it's different. And I could walk
away when my mom would lash outat me, as you saw in the movie,
I could, you know, it took awhile to learn it. But I also

(27:21):
had the history and she's mymommy.

Unknown (27:26):
And staffers, three, I think that history makes a big,
big difference. If people canlook back on a satisfactory
marriage, no, marriage isperfect. But if people can look
back on a marriage that has mettheir needs, and they felt feel
that they've met their partner'sneeds, then there is a kind of
almost like a relationship bank.
And that bank helps togive them something to draw on.

(27:50):
I encourage people, if they'velearned if a diagnosis right
away, start taking pictures,making voice recordings so that
you have those things. I have acouple of very, very precious
recordings of my husband's voicespeaking to me, and one very
special case reading to me. Andthere were days when that's what

(28:10):
held me together, listening tothat.

Don Priess (28:14):
And so you had that foundation, you had that
foundation, that you knew thatthis wasn't just a flimsy house.
There was a there was afoundation there. And so when
the wind blew up, yeah.

Unknown (28:29):
Yeah. Wow. Wow. Again, so let me go back to again, what
you said about caregiving andcare, care partnering, what how
do you define that? Those twodifferent I think they're, you
know, that's in the title of mybook, because as I thought about
it, to be a care partner meansthat there's a project in

(28:50):
enterprise that you and theperson who has the disease are
working on together, whetherit's somebody who can still
prepare their own meals, ortrack their own medication, and
you take on things that theycannot take on for themselves.
And sometimes you do it justbecause you can and because you
want to. And sometimes you do itbecause there really is no other
choice. But when you and theother person are both engaged in

(29:14):
managing or combating if youcan, a disorder that's being a
care partner.
When the person who hasAlzheimer's or Parkinson's loses
the ability to participate intheir own care, I think you'd
become a caregiver.
And that's a very importantchange in how you think about

(29:36):
what you're doing and how youfeel about what you're doing.
Because all of this I was sayingbefore all of the offering the
giving, the doing comes from oneside

Don Priess (29:48):
right. You did write a book Love dignity and
Parkinson's from care partner tocaregiver, why the book what at
what point did you decide I haveto write about this and
And was that more for yourself?
I don't think so because I knowwho you are. I think it was for
others or both.

Unknown (30:09):
Yeah, tell us about, I wrote it for myself, I wrote the
book that I wished I'd had. AndI hear that a lot. I just
thought, you know,somebody needed to have said
this, and nobody had said it.
And soI did it. And I guess I'd always
wanted to write a book. And thatwas the book that came.

Susie Singer Carter (30:32):
Yeah, I've heard that a lot from from
authors that say, I wrote thebook I wish I had.
And I often tell them, when weinterviewed them is that you
wrote the book, I wish you Ihad, when I was going through
this, because, you know, now I'mdiscovering all these wonderful

(30:53):
books and authors. But when Iwas going through it, I had, you
know, I was really blazing,blazing my own trails, I didn't
know,I really didn't know what the
hell I was doing. To be honestwith you. It was, you know, I
was learning as I went,absolutely. And when you're in
the middle of it, you don't havethe time to go to the library,
you don't have some time toresearch. And so the information

(31:13):
really, the more that someonecan hand you something and say,
This is a place to start. Thisis information that will help
you to understand where you are,where you are, what's happening
around you, and how you canmanage it. And so, hopefully,
I'm saved other caregivers, alot of the effort and a lot of
the anguish that are, you know,for me, we're part of being a

(31:35):
Parkinson's, you've turnedyourself into a caregiver for
our care partner, rather, withother care partners givers. So
you've been able to to putyourself in that position. And
so what what else do you do? Iknow you do a lot, but why don't
you tell us what else you you'vebeen doing in this realm?

Unknown (32:01):
Well, in addition to having written the book and
trying to let people know aboutthe book, I've recently started
an online program and emailprograms so that caregivers can
get a step by step, mental resetthat I call rest, and refresh.
Becausefinding rest is one of the
hardest things when you're afull time caregiver, there's

(32:21):
never the opportunity to let goof the responsibility to let go
of the needs. And so this 21 DayProgram is one of the things
that I've created on my websiteis other things. But basically,
what I want to do is offercaregivers, resources and
information and ideas andsupport so that they don't just
feel alone, and they don't feelso

Don Priess (32:46):
isolated. And like their infant reinventing the
wheel. When you say I need abreak, or I need to, you know,
there's guilt involved in that.
Because it's like how, if I'mnot spending every waking
moment, and every sleepingmoment dealing with this, then
I'm not a good caregiver. Andthat's not the truth. What are
some of the tips, you couldsimply that you can give a

(33:09):
caregiver that that will allowthem to, you know, break off for
a moment and be okay, it's amindfulness.

Unknown (33:18):
I think it is mindfulness. But I think that
when you recognize that this iswhat's happening, it's not my
job to fix this. And the mythsof caregiving is that if I'm
good enough, if I love hardenough, if I sacrifice enough,
my partner will return to me andsay, I have what I need. Thank

(33:40):
you. And that life will, againfeel balanced. And what I'd like
to tell people is that itbecomes something different than
that, it becomes recognizingthat this inability to fix the
situation is where you are,that's what you're looking at,
and finding ways and I givepeople ideas about ways to say,

(34:01):
this is what is and it's not myjob to try to fix it and freeing
yourself of that. Responsibilityfreeing yourself of that. It's
really a myth that you can dowith all means that you're free
to choose.
This one. Yes. This one no, thisone not this time. Hmm. That's

(34:23):
good.

Susie Singer Carter (34:25):
That's really good.

Don Priess (34:27):
Because you see, I know you went and you also felt
like you could fix it. You couldsay I can, I can talk my mom out
of Alzheimer's. I can teach herout of Alzheimer's. And, and I'm
sure with Parkinson's the sameway you can't talk them out of
it. You can't teach them out ofit. It is what it is what it is.
Yeah. And it's really goingmoment to moment. And saying,

(34:49):
Okay, I'm doing my best and alsocould do Yeah, and what you were
saying about you know, choosingwhat you can or will do and
being able to say I don't wantto do that.

Susie Singer Carter (35:00):
You know, I remember when my mom became
incontinent, and I was like, Idon't think she would want me to
address that. And I don't thinkI want to, I'd rather ask for
help with that.
And I didn't feel guilty aboutit, because I just made that
decision. I was there for herfor so many things. When I know

(35:23):
what I was good at, and I knowwhat I could give to her,
to make her have a better life,or as better better, you know,
as good a life as she couldwhile she was alive. So,
but I did make those choices,and I think you have to for your
union and think it's okay. Youknow, some people say, Oh, I
could never clean my mom'smouth, and I'm like, get me in

(35:45):
there. I'll get right in there.
But for some reason, you know,they can't do it, but I can, and
I didn't want to deal with theincontinent. And because I felt
like my mom, and I maybe it wasmy own, you know, projection
that, that she would feelembarrassed or less than lose
her dignity, lose her dignity.

Unknown (36:08):
I think each person is different. I mean, I had the
experience myself that theincontinence, I was able to
manage that at some point, Isaid to my husband, you're not
doing anything that I don't do.
We all have bodies, and this iswhat bodies do. But there were
other forms of professional carethat I just found
extraordinarily difficult. Andgiving my self permission to
like, I never learned to shavehim. Thank goodness, he had

(36:32):
mostly a beard because I nevershaved him well, guy.
And being able to say, No, I usethe image that if you're part of
Team to you and said, Who's thatrefrigerator? I don't like where
it is, you wouldn't have anyqualms about saying, No. I know
you want me to, but I can't dothat. Right.

Don Priess (36:54):
Right. That's a great metaphor. You know, so I'm
sure there's time many times youfeel like you're all alone, you
know, literally all alone inthis in this battle.
Is there anything you can dolike as far as employing the
help of family or friends? to Imean, what kind of support would
you want? Obviously, that youdon't want them to come in? And

(37:18):
and, you know, and change, orand shave him? No, but what how
can they support the caregiver?
Maybe, I think that's soindividual that is going to
really vary from person toperson and from family to
family, I actually write aboutthis idea of being a secondary
caregiver and the unspoken guiltthat secondary caregivers feel.

Unknown (37:41):
And that there are ways that they can step in without
feeling like they have to takeon the primary responsibility
for caregiving. And giving thatcaregiver opportunities for rest
are the most important thingseven more important to any
individual service, taking overthe responsibility long enough
for the caregiver to half anhour or an afternoon or week

(38:05):
that they're free of thecaregiving restless. Yeah, the
biggest.

Susie Singer Carter (38:10):
See, that's really good, because a lot of
like, I didn't this happens alot to happen in my situation
that, you know, one personbecomes the caregiver, and
everybody else just, you know,goes along there. What, yeah,
they drift away. And, you know,and I think it's because I'm

(38:32):
guessing I have no, I have noclue. But I'm think that if you
could assure them that you'renot asking them to take on the
full the full bore, you know,that you're just saying whatever
you can, if you can come in,and, you know, give me a set,
you know, give me a minute. It'slike, it's like, my daughter has
two little babies now. And youknow, if I'm happy to go in and

(38:57):
you know, give her somerestless, but I'm certainly
can't go in and take over, norwould I want to know what she
wants to want me to. And I thinkwe need to frame it. So we
realized that, you know, it doestake a team of people and and
whatever you can give as asecondary caregiver is well
appreciated, whatever it is.

Unknown (39:18):
Right? I think that's right. The secondary caregiver
really helps to share the burdenand gives the caregiver the
opportunity to offload some ofthe things. Yeah, can I talk
about one other resource thatreally saved me more times than
I can say, which is that theonline community of caregivers
is so powerful? Yes. And makessuch a difference. There's like

(39:40):
groups like like Parkinson's,better halves, and my
Parkinson's and all of thesegives you the opportunity to go
someplace and say, I can't dothis anymore, and I hate my
life. And then there'll be 15people who say, sweetie, I
understand Let's breathetogether for a minute. And that
sense of being accompanied inthe role of

Susie Singer Carter (40:00):
Caregiving, I think makes a very big
difference when you're in theweeds and doing it day after
day. So agree with you. Youknow, I mean, look at Al Anon
it's been it that was sosuccess. That's like a great
program for people that aredealing with something that that
is not their problem. But how dowe deal with it? How do we
accept it? How do we accept thatwe can't change it, but we can.

(40:24):
We can support it in a way thatis healthy
for us and for them. And I thinkthat's super important. Yeah,
you there has to be support. Andyou need an outlet, you need to
be you need to be cathartic andhave a place to that you feel
safe to do that. Because there'sa lot of guilt in saying, I'm

(40:46):
overwhelmed. And I hate thisday, and I hate, I'm angry. And
you know, there were times whenI wanted to, I literally, my mom
was tiny, and I was like, I'mgoing to pick her up, and I'm
going to put her in her bed. Andshe's gonna go for a timeout.
That's it.
You just want to run away fromhome sometimes. And it's so

(41:07):
wonderful to say that and tohave 35 people online say, Me
too. You bet. Yep. Did I feelbetter? Yeah, you do. Because if
you don't talk to other people,you don't know that you're,
you're normal. That's normal.
You know, it's why we made themovie because look at my mom, I
adore my mom, and my mom adoredme. And yet there she is calling

(41:31):
me a whore.
Right? And how do you?
Like, I mean, I wanted people tosee that, that that, you know,
we can ride that wave? And thatdoesn't mean any, it doesn't
mean anything. It's not real.
Right? Not real,

Unknown (41:52):
hard lesson to learn to be able to step back from it and
sort of observe.

Don Priess (41:57):
It is and isn't there times where you where, you
know, yes, you want to talkabout it. You want to share how
you're feeling it. But therearen't there times where you
just don't want to think aboutit. You don't really want to
talk to a friend and talk aboutanything else. But that. And I
think for people who are friendsof the caregiver, they don't
know it to you. Like what to saywhat to, you know, do we want to

(42:20):
talk about this? Or do you wantto talk about anything else?
What are there any suggestionsfor friends of the caregiver
when they're when just talkingwith somebody who's in that war?
Well, I think it's always areason reasonable to say I'm
sorry that you facing somethingso tough. What's on your mind
right now? What would you liketo do right now and then put it

(42:41):
in the caregivers hands to say,let's talk about playing bridge
or buying a new outfit for ya.
Chico's? Let's go to Cheetos.

Susie Singer Carter (42:53):
Let's have a margarita. Retail therapy. As
always, I am a big fan. I'm abig fan.
Read retail therapy and worksfor me makes no difference.
Yeah. And also you're you youlike meditation. I see that
about you. And you you actuallyoffer a method of meditation

(43:14):
that you can download on yourwebsite. Do you want to talk
about

Unknown (43:19):
it have a slightly it's a free meditation because I
thought that it's it's reallydesigned to give caregivers a 10
minute break. Fine, I suggestfind a moment when your person
is asleep or when your personis, you know within someone
else's care or that preciousprecious time between finishing

(43:39):
the grocery shopping, andturning the ignition and going
home and sitting in your car forabout 10 or 15 minutes, listen
to this meditation and just besomewhere else. And it's
amazing. How much differencejust the mental break can make.
And how you manage the day today physicality is caregiving.

Susie Singer Carter (44:00):
Right. I find it so difficult to
meditate. For me it's so hardand I want to do it. And I I
know there's a way but do youhave any tips on that? Because
there's like,Dawn is my best friend. We
decided decidedly we were goingto learn how to meditate. And we
went to this studio that is allmeditation. And we could not

(44:22):
look at each other because weweren't going to break into
laughter because we were like,are you meditating? Not me.
Neither.

Don Priess (44:34):
Everything everything else. I haven't.

Unknown (44:39):
Yes, please do tell.
There's a very interestingphenomenon called laughter yoga.
And it was started in India. Iactually was trained in laughter
yoga many, many, many years agoand I won't even try to show you
how it's done. But essentiallyit's using the

(45:00):
sounds and breath of laughter todisconnect from your life. And
you can just look it up.
laughter yoga Google. For us. Itwas really
funny and it will make a bigdifference. I'm going to tell

Susie Singer Carter (45:19):
you also went to it. I dragged on into
everything. He's my, he's my BFFI am single ever after he's been
through everything with me. AndI continue to drive. I you know,
I'm, he's Ethel to my Lucy. AndI said, we're gonna go take a
yoga class. And I'm very, I'mvery high energy. I do hip hop
dancing. I do step aerobics, youknow, but I need to get mindful,

(45:43):
right. So we go into yoga class,and we're in some downward dog
position. And of course, Icannot look at him. And we are
squished up against the floorand we just start laughing but
we're holding it in. It's likewhen you're in like a just a bad
time to have the giggles the badtime. Well, we got kicked out of
class. Yeah, we might run out ofa teacher. Because I think

(46:06):
you're I don't think this is notfor you.
It's really a lot of fun. Oh, myGod. Funny hired me to do a

Unknown (46:18):
video about laughter yoga for part two with Terry's

Susie Singer Carter (46:23):
will be your guinea pigs because we are.
We were all we want to do islaugh. Okay. Yeah, I have a
friend who knows a lot about it.
And maybe we can have a littleconversation about laughter You
should do that. We should do alive we'll do a live or
something to get everybody. Whenthat'd be fun. That would be
great. Yeah, I think it'd begreat. Listen, you guys, I am a
type. I'm high energy. It's sodifficult for me to slow down

(46:47):
and to like, but it's you know,but laughing laughing laughter
like they say is good medicine.
It's great medicine. I mean,that is that changes your
endorphins. And it changes youreverything. I highly recommend
laughing.

Unknown (47:04):
Great. Well, I expect to report on laughter yoga.

Don Priess (47:10):
Does that ever come into play when you're in the
middle of this and everyoneknows that you're in a in a very
hard situation. And if youhappen to get away, or I don't
know, for one evening, and yougo to dinner, and you're
laughing? And you're taughtthere? Was there ever a moment
where you say, Oh, I shouldn'tbe laughing? I shouldn't be
enjoying myself.

Unknown (47:30):
There's something serious going on here. i And how
do you get out of that? If youdo? Well, I think many
caregivers do have that feelingthat I'm not entitled to any joy
or any recreation or because mypartner is suffering. And I
think that's mistaken. Becauseultimately,

(47:54):
the Parkinson's, the Alzheimer'sis their journey. And it's not
your journey. And even ifyou've, you know, flesh of my
flesh and bone of my bone, youstill are separate people. And
you don't have the disorder.
And you are free to be human inyour own way. And that means
joy. I think if I were feelingsuper guilty about that, I might

(48:19):
make it make a point of thinkingabout something that gave my
husband a sense of satisfactionand relaxation. My husband
really liked to have his handsand arms massaged and calm to
him food to him. And so I mightmake it my business to do that
and give him some measure ofcontentment and comfort that

(48:39):
suited what he was capable. Ithink sometimes caregivers

Susie Singer Carter (48:44):
bring their partners along for those events
thinking well, I'm gonna go havefun. So I've got to bring him
with me so he can have fun too.
But it doesn't work. And thenyou're both end up kind of
frustrated and unhappy. And soit's so refreshing to know, this
is this is mine. Oh, Terry,that's such a good point. That's
such a good point. I you justtriggered a memory of mine.

(49:07):
Taking my dragging my mom tothings that I thought that she
would enjoy. And she didn'tbecause she could she wasn't
capable of it. It was toooverwhelming. It wasn't it just
wasn't appropriate. And I it wasa disappointment for all of us.
You know, and on the other hand,I mean, I'm going to tell the
story just because I learned alot from it. When my husband's

(49:27):
older daughter got married, heworked very, very hard to write
a toast to her and it wasabsolutely spectacular what he
was able to do, practice andpractice. We went to the wedding
together and it was very clearto me that I was there to help
him participate in hisdaughter's wedding. And I did it
in a fancy dress. But I wasreally clear in my own mind that

(49:50):
I was not there for a sip ofchampagne or a bit of wedding
cake and once I let go of that,I would say

Unknown (50:00):
able to be comfortable with being there as his person.
But if I had gone therethinking, Oh, it's wedding, I'm
gonna participate, it would havebeen so unhappy and so
frustrating. And again, neitherof us would have felt very, very
engaged or very happy. And theway it ends up, it's a very warm
memory that I hold very close,how well things went shows.

Susie Singer Carter (50:24):
That's awesome. That's a great, that is
a great lesson. Because you, youdon't set yourself Self up to
lose, you set yourself up towin.

Don Priess (50:33):
And I think going back to just a little bit back
was that I think it's importantto hopefully that the person
that you're, you're caring foryour loved one doesn't want you
to be miserable. They don't wantyou to, to not enjoy life.
That's the last thing they want.
And I think it's sometimes weforget that that they don't want
you to, you know. And so

Unknown (50:57):
there are some that that wants you to be miserable.
Yeah, that's probably that waybefore Parkins, you know?
Exactly, exactly. Yes. They werein romping awful before. They're
going to continue to be grumpyand awful.

Susie Singer Carter (51:10):
Right?
Yeah. That's my movie. My mothersays to me, she gets lucid and
goes, Oh, my God, you got tolive. You got to put me in a
home. You got to live your life.
You know. And that was a giftthat she gave me that night. You
know, and I was like, Oh, you'regoing?
But not? Not yet. Not yet. Yeah.
But you know, so I tried tobring humor into everything,

(51:34):
because I knew that was alanguage that my mom spoke.
So humor is very helpful, likemusic, like things that are
visceral, that can get in you'vedefined things that open those,
those those doors that looklocked.

Unknown (51:55):
Yeah, I think that's right, and finding your weights.
And then if I talk about findinga way to reach in past the
dementia, and find the person,and when you can have those
moments you feel connectedagain, and learning how to just
walk psychologically walk pastthe craziness, of being called
all sorts of awful names. Andremember, how do you feel about

(52:20):
your daughter, as she's yellingand screaming at you, she's
likely to say, Oh, my daughteris the sweetest thing that you
you're a horrible person. Andthat's weeding your way past the
dementia craziness. That's anoffensive word craziness, but
the past the dementia, andreaching in and tweaking the
connection that that personfeels with you. Right.

Susie Singer Carter (52:42):
And just just to, to validate what you
said about craziness. It's not Imean, it is craziness in terms
of like, it's not what you'reused to. It's not what they're
used to. It's the way that thisdisease manifests. So it's not a
it's not a judgment on theperson. It's a judgment on the
disease. And the disease is theculprit in the diseases is the

(53:02):
Laos. Yeah. It's a crazysituation. It is it is and no
one set up for it. No one goes,oh boy, I can't wait to be a
caregiver. You know, like, likeLee, like Lisa given says
there's no caregiver Barbie,there isn't. Nobody should be
there should be but nobody growsup going. I want to be caregiver

(53:24):
Barbie, you know. Butbut it, you know it but we do we
grow up and we put our big girlpants on and our caregiver of
Barbie hat. And we go and go towork.

Don Priess (53:39):
Right? Yes, we do.
As we do. So what's next? What'swhere are we heading? I mean, I
know you've got the websites andyou know, continuing to give it
any information. And so anotherbook in the in the future? Or
where are we going to tell youwhat my biggest wish is right
now, I would love to have theopportunity to talk to doctors,
to family doctors anddermatologists and to movement

(54:02):
disorders, doctors about how youcan engage the caregiver in the
treatment and care of your, yourpatient. I think that insurance
and

Unknown (54:16):
given just sort of the way the whole medical system is
structured, there really isn't alot of room. And yet, I can say
that with all the great doctorsand all the great medical care
that my husband had. There wasonly one medical person who
looked me dead in the eye andsaid you are doing a good job.
Just once. Andyeah, it should have been more.

(54:37):
I should have been seen thecaregiver should be seen by
the caring technicalprofessionals and they don't
have a pathway into it. Theydon't know how to do it. And I
would love to get in front ofthose folks and say, here are
things you can do. They don'ttake too much time. But they'll
make a difference for you. Forthe person who's doing it caring

(54:58):
and for your patient.

Don Priess (55:00):
beautiful, I love, you don't understand, they don't
understand. I mean, you knowthat sometimes it's like they
know the physical manifestationsof the disease, but they don't
know that connection, which isprobably the most important
thing, which is the human sideof it. That's right.

Susie Singer Carter (55:16):
The collateral, the collateral that
happens. So anything we missedthat you would like to talk
about, because this was lovelyspeaking with you,

Unknown (55:26):
I could talk about that stuff for days on end, but you
guys are very thorough, and Ithink that we've made a lot of
really important points that Ihope will help caregivers to,

Susie Singer Carter (55:36):
to feel better about this whole process
for sure. And I really thinkthat your, your, your journey is
is is so unique to what you knowthat I've talked to other
people, we've interviewed a lotof people but going into a
marriage, knowing taking it on,full, you know, fully aware of
everything is and I'm sure thatthere are many, many others like

(55:59):
you that have done that, but youknow, and so or maybe have been
are on the, you know, on thefence about it, maybe they are
your story can give them a peaceof mind and give them a
direction, whether it's one wayor the other. So I think that in
that way, it's very, you'revery, very valuable that way. So
thank you. Thank you.

Don Priess (56:22):
Definitely, well, definitely look for Terry's book
Love dignity and Parkinson'sfrom care partner to caregiver,
visit her website, which isseaberry.com and also.com,
Seabury house.com. We'll put allthose those. It'll be in the
show notes. You won't miss it.
You'll find everything.
Facebook, Twitter, Instagram,all those good things. Yeah. And

(56:44):
we can't thank you enough forbeing here today. You've you've
opened our eyes and our hearts.
And we really appreciate youtaking the time and sharing your
your experience in your world.
Definitely. Thank you. Thankyou. That was really great dawn.
She was, I mean, amazing. Notonly amazing for what she did,

(57:05):
but just there's no this essenceto her. That's yeah, she's a
very calming and gravitas as Iwould you say classy and classy.
She goes Listen, she shops atChico's that's my favorite
place.

Susie Singer Carter (57:22):
If you've seen our our movie, my mom and
the girl, Valerie Harper'swearing all Chico's in honor of
my mother, you can see rightbehind you. She's right in the
middle there on the post. Yeah,yeah, he's wearing a Chico's
jacket. Yeah, she goes, anyway.
No, she was she was terrific.
And couldn't it you know, it'sinteresting how things get in
the zeitgeist, you know, withMichael J. Fox, and, and and

(57:45):
here we talking to someone withParkinson's? It's not come up in
my purview. No. And now my buddywith my Yeah, my mom is now part
of my world, although it's thankGod knock all the woods in the
world. It's staying very minorright now. Yeah. I wanted to ask
her if there was like, adifference between like it is

(58:06):
with Alzheimer's, like an earlyonset Parkinson's, as opposed to
your mom being in her 80s. Andwell, I mean, Michael J. Fox got
it when he was very young, very,very young. And yeah, and I
don't we don't know how long mymom's had it, you know, but if
it's not, man, I can't I don'tcan't imagine it any more than
three or four years. I mean, Ican't imagine it's wasn't it's

(58:27):
not manifest and, and right now,they're saying it's yeah, it's
just kind of remaining. Youknow, where it is. But, you
know, it's, but it's amazing howsimilar some of the, you know,
between Parkinson's andAlzheimer's. Yeah. Sounds like
there's a lot of similarities asfar as on the caregiving and
there's definitely and then evenin with with the documentary,
you know, when I talk aboutableism, I mean, Parkinson's,

(58:51):
dementia, same kind of of bias,because because it does affect
the cognitive abilities. So onceonce that's in question,
you know, the respect that isafforded is,
is not to be found. That's true.
So anyway, but I in honor of ustoday, because I'm all about

(59:16):
what does it say? Dawn? There'sit says, oh, V. Oh, wait.

Don Priess (59:24):
I know it says love and I think you know, it's in
our it's in our title. It's onmy shirt, mines and it's in my
heart and it's on your shirt.
And, you know, why? Do you knowwhy do why don't you tell me
again? Okay, I'll say and thatis because love is powerful.
Love is contagious, and loveconquers all we really

(59:48):
appreciate everyone really does.
Thank you.
We hope you like we love yousubscribe, you share and also
Please consider possibly makinga small donation or huge
donation to No Country for Oldpeople. We need your support we

(01:00:10):
you know, we don't like to begbut we're gonna beg weak
national consumer voice forquality long term care and have
a wonderful day bye

Susie Singer Carter (01:00:27):
hey, this is Susie singer Carter and I
just wanted to take a minute totalk to you about bed sores. I
know but if you're like I wasyou probably don't have a clue
what a bed so really is. Mostpeople don't. I mean, no one
told me and I really justassumed it was part of the body
that was like the name says sorefrom Lane in one position too
long. And then if you change theposition all better. Wrong. That

(01:00:51):
sir is really a euphemism formore appropriate names such as
pressure wound, and to keep itas ulcer. Unfortunately, I
discovered what a bedsore reallywas. When my mom was admitted
into the hospital last year witha stage four ulcer, that is the
worst level, you don't ever wantthat to happen. bed sores can
develop quickly and worsenrapidly and can lead to serious

(01:01:11):
health issues, even death ifthey're not properly treated, or
properly treated. And thatincludes cleaning and dressing
the wound, but most importantly,reducing pressure off the sore
by frequently changing theposition of the person off of
their wounds so it can heal andthat can mean propping the
person up 30 degrees to theside, far enough to be off the
lower back, but not too far asto be on the side hip where

(01:01:34):
there isn't much cushion rightbetween the skin and the bone.
This is why I'm so excited totell you about that sir rescue,
which was designed by an amazingwoman when jewel a nurse who was
tired of fooling around withsimple pillows and bulky wedges
that just don't work the bedsiderescue positioning wedge
cushions are uniquely designedto provide ergonomically correct
and comfortable support for asustained period of time without

(01:01:58):
touching the sore and thecurvatures. And bilateral angles
make it possible for the bedsidecushion to be used to support
many other body parts as well.
You can put the heels you canput it under the head, you can
put it under the arms behind theknees, both sides. You can even
use it as a breakfast in bedtable the curvatures of the bed
so rescue fit the curvatures ofyour person's body and it's made
to meet all the patientssafeties, and bed bound

(01:02:20):
positioning standards for acuteand long term care facilities. I
wish I had it for my mom, Ireally do. So chances are if you
have a loved one in long termcare facility, or at your home,
you may become a pressure injurysoldier too. But bed sores
should never never get to stagefour and one way to ensure that
they don't is to make sure thatas soon as one begins to

(01:02:43):
develop, you keep the pressureoff. You can do that easily with
beds so a rescue and you canfind bedsore, rescue and many
other pressures solutions onlineat jewel nursing solutions home
of the patented bed so rescuepositioning which cushions pads
and pillows that's jewel je w el l nursing solutions.com. And
when you use the special codeand C F O P the entire amount of

(01:03:05):
your purchase will go to supportour important documentary No
Country for Old people whichchronicles my mother's journey
navigating the nursing home longterm care crisis that literally
began with an unreporteduntreated pressure wound. So
take the pressure off yourselfand your loved one with the
bedsore rescue