0:00

Hi everybody, it's Susie Singer Carter and I just wanted to take

0:01

a minute to tell you about a

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1:17

People and I thank you so much.

1:27

When the world has

1:27

gotten down, and Alzheimer's

1:31

sucks, it's an equal opportunity

1:31

disease that chips away at

1:35

everything we hold dear. And to

1:35

date, there's no cure. So until

1:39

there is we continue to fight

1:39

with the most powerful tool in

1:42

our arsenal. Love. This is love

1:42

conquers all is a real and

1:48

really positive podcast that

1:48

takes a deep dive into

1:51

everything. Alzheimer's, The

1:51

Good, the Bad, and everything in

1:56

between. And now here are your

1:56

hosts Susie Singer Carter and

2:00

me, Don Priess

2:06

Hello, everybody. I'm Susie Singer Carter.

2:09

And I'm Don Priess

2:09

and this is love conquers all

2:12

calls. Hello, Susan.

2:14

Hi, lovely

2:14

Donald. How are you? I'm lovely.

2:18

That's what I said

2:18

today. Today. I'm lovely. Which

2:22

says it all. What's up, what's

2:22

happening.

2:26

Well, we're

2:26

both wearing black today. We got

2:28

the I always wear black. This is

2:28

kind of my uniform.

2:31

It's kind of the

2:31

same every show or the last

2:35

show. I actually wear a button

2:35

down black shirt.

2:38

Wow.

2:38

Interesting, folks. So

2:40

interesting. What's Yeah,

2:40

wardrobe talk. I well, I do like

2:44

some, some therapy, which

2:47

Yeah, you do like your wardrobe.

2:49

I like

2:49

retail therapy. I did clean out

2:52

my wardrobe last week though.

2:52

And and that is therapy to

2:57

believe me, it's therapy. I

2:57

mean, it feels so good. Cleaning

3:03

out and you get and you find the

3:03

most amazing things. You're

3:06

like, oh my god, I forgot. I

3:06

bought that. This one still has

3:09

a tag on it. It's crazy. So it's

3:09

actually 31 three shirts. Yeah,

3:15

I've worn three shirts since I

3:15

cleaned out my closet that I

3:17

didn't know were there. I know.

3:21

Yeah, it's, it's

3:21

like our shopping or you

3:23

clotheshorse. You only wear one

3:23

shirt. So when I say the three

3:27

shirts, it's they were all like this. Okay. So I didn't know they were

3:31

there. Wow. It's like Theranos. Girl. What's

3:36

her name? Thier nose? No, no,

3:40

she's going to she's going to jail.

3:43

Elizabeth, is that her name? Elizabeth. Elizabeth Miller? No. Elizabeth

3:45

Holmes. Holmes. That's it.

3:50

Holmes. Yeah, yeah, no, that

3:50

that show was fantastic. But she

3:55

had a closet full of the same

3:55

jacket and shirt and wore the

3:58

same thing every day. Yes, with

3:58

her voice like this. She put her

4:03

voice down their nose. That's my

4:03

favorite imitation.

4:07

Anyway, we should get this. I just I just saw on the view

4:11

this morning, Michael J. Fox.

4:16

And he's we just watched his

4:16

documentary and we just watched

4:20

his documentary with you as

4:20

Parkinson's called still and

4:23

he's he's still he's still moving. I

4:25

mean, it's it's pretty

4:30

extraordinary how he's embraced this disease

4:32

ultimately. And he's had it so

4:37

long and and we have an oddly

4:37

enough was the you know, always

4:43

well, not oddly, it's the way

4:43

life goes the way the world

4:45

works that, you know, of course,

4:45

out of the blue I get a query

4:50

about a woman who is a carer or

4:50

was a caregiver, and a care

4:54

partner for someone with

4:54

Parkinson's which is quite

4:57

similar to Alzheimer's in

4:57

certain ways. You

4:59

And she has such a

4:59

great perspective. So, I'd like

5:04

to just bring her on Don, can

5:04

you introduce can I?

5:08

Can I tell you about her? Please

5:08

do it. Please do it now. All

5:12

right. Terry Pease, PhD is an

5:12

author, coach and consultant for

5:17

spousal caregivers. She's

5:17

dedicated her life to working

5:20

with people who are facing

5:20

highly stressful situations.

5:24

When Terry married her husband

5:24

who had Parkinson's disease, she

5:27

brought her wealth of knowledge

5:27

and experience to bear on caring

5:30

for him. She trained staffs in

5:30

organizations around the United

5:33

States on how to offer

5:33

supportive, empathetic and

5:36

trauma informed care. Her

5:36

professional experience has

5:39

informed her approach to

5:39

caregiving and to encouraging

5:42

Parkinson's caregivers to make

5:42

the idea of self care real

5:46

practical and possible. Terry

5:46

recently authored love dignity

5:50

and Parkinson's from care

5:50

partner to caregiver, which

5:54

offers a new approach to

5:54

caregiving that can help ease

5:57

the stress and anxiety that

5:57

comes with this diagnosis. In

6:01

addition to her work, as an

6:01

author and caregiver advocate,

6:04

Terry continues to post

6:04

information support and

6:06

resources on her website. And

6:06

with that, we are so honored and

6:11

delighted to welcome Terry

6:11

Pease. Hello, Terry.

6:14

Hi, Terry.

6:14

So nice to have you

6:17

Hi Don. Hi Susie

6:19

It's very nice to have

6:20

I am very delighted to be here.

6:22

Thank you,

6:22

thank you, it's, it's, it's a

6:26

great, a great conversation that

6:26

we're going to have with you

6:28

because it's really about

6:28

caregiving. And, you know, we

6:33

we've been focusing a lot,

6:33

obviously, because it's love

6:36

conquers all on Alzheimer's.

6:36

But, but Parkinson's is also in

6:41

that in, you know, if you're

6:41

going to bundle kinds of

6:46

diseases that you know, this,

6:46

there's a lot of similarities,

6:50

even though it doesn't manifest

6:50

physically the same way. But

6:52

there's a lot of similarities.

6:52

And I think that, you know, by

6:55

you learning, and really, really

6:55

immersing yourself in this world

7:01

of caregiving, that you you have

7:01

a lot to offer, anybody that is

7:06

really caregiving and care

7:06

partner, which I'd love for you

7:09

to also define the difference,

7:09

because you have said earlier

7:14

than when we were talking before

7:14

we started recording about this

7:18

new role that you're taking on

7:18

as a care partner, as opposed to

7:21

a caregiver. So I think that's

7:21

interesting. But tell us a

7:24

little bit about yourself and

7:24

how you come to this interview

7:28

today. What brings, what's this,

7:28

the journey of your, of your

7:33

experience?

7:35

Well, it's funny, I

7:35

was talking about this with

7:37

someone else earlier this week.

7:37

And I come to this with a

7:40

combination of experiences, I

7:40

was trained as a developmental

7:44

psychologist, and I was a

7:44

college professor and worked for

7:47

many years in a variety of sort

7:47

of social service settings where

7:51

I was supporting the people who

7:51

took care of trauma survivors,

7:55

essentially. And so it's been a

7:55

lot of time just thinking about

7:59

the ways in which things happen

7:59

to people and the kinds of

8:02

support and help that people

8:02

need, and what the helpers need.

8:06

So I've always had that sort of

8:06

double layered focus on the

8:10

person who experiences the

8:10

trauma or the, the difficulty,

8:14

and the person who's doing the

8:14

helping. And that's always been

8:17

sort of my attention. So I've

8:17

done that. I've done that a lot

8:21

of different kinds of settings.

8:21

And then, late in life, I had a

8:25

very happy second marriage. And

8:25

I married someone who told me

8:32

right away, that he had

8:32

Parkinson's.

8:35

And so I met my husband knowing

8:35

that he'd had Parkinson's for a

8:40

good long time. And I have to confess, I tried

8:43

really hard not to look green.

8:47

Because if you don't, it's hard

8:47

to say yes. And someone who had

8:51

a condition that I knew very

8:51

little about, but I knew it was

8:54

not a zero, it's not level. But

8:54

he was my guy and

9:00

you off my feet, so to speak.

9:00

And so we ended up marrying, and

9:05

I became a caregiver. And I took

9:05

care of my husband whose

9:08

Parkinson's first was moving

9:08

around kind of slowly, and then

9:12

as they say, started to gallop

9:12

along to the point where it was,

9:17

you know, the most pervasive

9:17

thing that he was experiencing,

9:20

and the most profound part of

9:20

our relationship was my moving

9:24

from wife, to care partner, and

9:24

then to caregiver and took care

9:30

of him for the rest of his life.

9:30

And then after he died,

9:35

I was at a kind of a wellness

9:35

retreat, as I was asking myself,

9:38

what's next to me? And the

9:38

question came up in the course

9:42

of the activities of this event, can you have a happy and

9:45

successful marriage with someone

9:49

who has dementia or another

9:49

degenerative disease? And I

9:53

wanted to know the answer to

9:53

that because I felt like it had

9:56

that kind of marriage. And so

9:56

that led to my writing

10:00

This book.

10:00

Oh, that's amazing. It's so in,

10:06

in the zeitgeist right now with

10:06

Michael J. Fox and going, you

10:09

know, and watching his his wife,

10:09

Tracy, Poland, you know, in,

10:13

like he says in his documentary

10:13

in sickness and in health, and

10:16

she's been there the whole time.

10:16

And you know, and it's been a

10:20

long disease, like my mother's

10:20

Alzheimer's was 16 years of a

10:24

disease. And, and I mean,

10:24

Michael has had it since 1991.

10:28

His has progressed very slowly.

10:28

But now it's, you know, it's,

10:32

it's really at its peak, from

10:32

what from all signs, it looks

10:36

like that. So it really is

10:36

extraordinary, you know, that

10:40

you and, and are modeling that

10:40

kind of relationship.

10:46

Yeah, he has lived an

10:46

extraordinary life before he was

10:50

diagnosed. And he's lived an

10:50

extraordinary life since the

10:54

diagnosis. And a lot of people are thinking

10:57

about Parkinson's disease. And

11:00

one of the things that I noticed

11:00

I looked at an interview that he

11:04

did just the other day, Michael J. Fox seems not to have

11:07

the primary cognitive effects

11:12

that are so common and

11:12

ultimately in as people age with

11:16

Parkinson's, up to 80% of people

11:16

who have Parkinson's will

11:20

develop a form of dementia,

11:20

Parkinson's, dementia, and he

11:24

doesn't seem to show that he

11:24

seems on the ball sharp

11:26

cognitively, probably pretty

11:26

much as he had ever been.

11:31

For many

11:31

people, it's different than

11:33

that. And I think it's really

11:33

important to talk about the ways

11:36

that Parkinson's changes, the

11:36

kinds of cognitive functioning

11:41

that a person has. And also,

11:41

most importantly, I think the

11:44

way Parkinson's affects the

11:44

kinds of relationships that that

11:49

exists between a person with

11:49

Parkinson's and their caregiver.

11:53

I certainly didn't know about it

11:53

when I met married my husband,

11:56

and especially a caregiver, that

11:56

that is, is a spouse. You know,

12:00

it's so different. And, and I've

12:00

seen that time and time again,

12:05

with, you know, married couples

12:05

that are experiencing

12:09

Alzheimer's, where there's a lot

12:09

of denial, where they don't,

12:13

they wouldn't want to, to lean

12:13

into it, because it's too hard.

12:17

And you know, and different from

12:17

you. They didn't marry into it,

12:23

it just occurred. So in some

12:23

respects, yeah, you, you were

12:29

rolling up your sleeves, you

12:29

knew kind of what you were

12:32

getting into. But obviously, you

12:32

had no idea because you hadn't

12:36

experienced it, but you knew

12:36

that something was coming.

12:41

Right, I knew something

12:41

was coming. And I definitely

12:43

said yes to the challenges that

12:43

were going to come with this

12:48

marriage. But then, as Michael

12:48

J. Fox says, or his wife says,

12:52

when we marry, and we say, in

12:52

sickness and in health, that's

12:55

really saying, all of us, at

12:55

some point will experience an

12:59

aging. And so that that's a

12:59

commitment that any person

13:04

makes. Did you discuss ahead of time,

13:05

the the commitment, the as you

13:11

going to be become a not only a

13:11

care partner, but then a

13:14

caregiver was just discussed?

13:14

And you know, he probably didn't

13:17

know we don't you never know

13:17

where it's heading. But how, how

13:22

the depth of it? Did you discuss

13:22

that ahead of time? What were

13:25

the expectations going in? I

13:25

don't think either of us really

13:30

knew the way that Parkinson's

13:30

would affect our marriage, I

13:33

assumed that it was the physical

13:33

disorder, shaking, sticky feet,

13:38

the difficulties with mobility

13:38

and stiffness. And because I was

13:43

familiar with people with

13:43

disabilities, and it had people

13:46

with disabilities in my life,

13:46

before I knew I can do this,

13:49

this is not too hard for me. I

13:49

did not expect the changes that

13:54

lead to Oh, for example, that my

13:54

husband could no longer feel

14:00

concern for me, empathy for me,

14:00

because Parkinson's and I think

14:05

this is a way in which it

14:05

diverges from Alzheimer's is

14:09

that it specifically seems to

14:09

focus with its reduction of

14:12

dopamine, it reduces the

14:12

capacity for empathy. And I will

14:17

never forget, I had had a

14:17

fingered scary and serious

14:20

diagnosis, which fortunately

14:20

resolved and hasn't left me with

14:24

any long term effects. But when

14:24

I got the diagnosis sometimes

14:28

when treating for this disorder, he looked at me one day, and he

14:30

said, You know, I know I should

14:34

care. But I don't

14:38

hate. It

14:38

sounds awful. And yet he wasn't

14:41

saying it in any ugly way at

14:41

all. He was so puzzled by that,

14:46

that he couldn't find it in

14:46

himself. That's so interesting.

14:50

I we have a mutual friend whose

14:50

husband was in a car accident.

14:54

And for a very long time, he

14:54

he's he since regained a lot of

15:00

his cognitive deficiencies

15:00

deficiency that that was the

15:03

result of the accident. But

15:03

wherever the head injury was, he

15:07

was lacking empathy. And he knew

15:07

it just like what you're saying.

15:11

And he was like very nonplussed

15:11

about it. He was very, you know,

15:16

just rational and said, I don't

15:16

know if I can love you anymore.

15:21

I just don't feel it. And it was

15:21

very, you know, and then I

15:24

remember her saying, it was a

15:24

huge problem. And, you know, the

15:29

differences is, she had hoped

15:29

that, that he would regain it,

15:33

which he did. Whereas, you know,

15:33

knew that it was only going to

15:38

get exponentially worse, is that

15:38

correct? It does. I think that's

15:43

right. I mean, it changes over

15:43

time. And as Parkinson's

15:47

progresses,

15:49

through the whole

15:49

configuration between spouses or

15:53

committed partners, changes, as

15:53

the person becomes less able to

15:57

engage at all verbally, and

15:57

becomes more clearly dependent.

16:03

For everything for all the ADLs.

16:03

And for all of the moment, care,

16:08

the relationship, I can interact

16:08

with, sorry, I should sorry,

16:12

that's a bit of jargon, it's

16:12

activities of daily living, all

16:15

the stuff that we do, you know,

16:15

cleaning up, washing dishes,

16:18

washing our hands, feeding

16:18

ourselves going to the bathroom,

16:22

all of those things. And people

16:22

lose the ability to, to manage

16:27

those. So yeah, I mean, it's a hard thing

16:30

when that relationship shifts,

16:34

and you know, that they're just

16:34

not there. I'll never forget the

16:39

day that I'd speak in front of

16:39

the bathroom mirror. And I just

16:42

looked at myself in the mirror, and I said, you know, he has nothing for you.

16:48

And it was heartbreaking to make

16:50

that realization. But then it

16:54

was also freeing, because once I

16:54

understood and as I came to

16:57

understand that this was part of

16:57

what Parkinson says, done to his

17:01

brain, and his capacity to love

17:07

once I understood that it freed

17:07

me from looking for. Right, and

17:12

that was a great relief, because

17:12

then I wasn't feeling hurt.

17:15

Every time he, you know, didn't

17:15

smile. Did you embraced it, you

17:20

embraced it? Is Can I ask you

17:20

just to

17:24

just a detail on Parkinson's, because I'm not that familiar with it.

17:26

But in terms of that kind of,

17:29

you know, like with Alzheimer's,

17:29

you get these, there is a lack

17:33

of, of empathy. It can be it can

17:33

manifest that way. We're, you

17:37

know, it's really their world

17:37

almost like children. Right. And

17:41

they don't see outside of that.

17:41

But at but but what we live for

17:45

as caregivers of someone with

17:45

Alzheimer's, are those moments

17:49

of lucidity which do happen.

17:52

Right? So does that

17:52

happen in with Parkinson's? It's

17:58

different. I mean, first of all,

17:58

people say, and I think it's

18:01

really true, every part of this

18:01

case is different, different,

18:04

but in my exists, talk about my

18:04

experience. And maybe we can

18:07

generalize from that. But in my

18:07

experience, the losses were

18:11

spotty, and inconsistent. So that even

18:13

though there were some areas in

18:16

which my husband could do very

18:16

little for himself, I'll give

18:20

you an example. We went out, we

18:20

bought a sailboat, we're about

18:24

to give it away. And so he was

18:24

talking to the young men who

18:27

were fitting up this boat and

18:27

getting it this little silver,

18:29

getting it ready. And he got

18:29

involved in a very complex

18:33

conversation about the wind and

18:33

the sails and things that are

18:36

beyond my understanding. And he

18:36

was his regular sailor cells.

18:42

But he couldn't really find his

18:42

way back to the car. And so

18:46

there's that kind of

18:46

inconsistency where he's there.

18:49

And then he's, he's conducting,

18:53

that I'm talking to all people

18:53

with Parkinson's. I think the

18:57

similarities, the disorders are

18:57

so individual that rather than

19:03

trying to separate them and say,

19:03

Well, this is one or the other,

19:07

the responsibility for the

19:07

caregiver is pretty much the

19:10

same. Whatever the label is that

19:10

the neurologist put on the

19:14

difficulties the person is

19:14

having to be present, to be

19:17

engageable, to be engaged, to

19:17

step back and step in

19:23

that kind of

19:23

nimbleness that's required to

19:26

anyone who's helping somebody

19:26

who has a kind of dementia.

19:29

Right, right. My my mother,

19:29

right was just diagnosed with

19:33

Parkinson's about two years ago.

19:33

She's 89 And they say it's

19:39

really not progressing much

19:39

right now. Thank God, but I

19:42

noticed little J and my brother

19:42

and sister and it was oh my god,

19:46

I can't believe mom said that or

19:46

acted that way or is acting like

19:50

this, and I was like, This is not you know, we have to

19:52

be, you know, ready for anything

19:57

we don't know and like because

19:57

it does manifest differently.

20:00

In between for everybody. I

20:00

mean, just again, without we

20:05

have, I have no real knowledge

20:05

of it, you know, and you going

20:09

in with no real knowledge of

20:09

even though you were, you know,

20:11

caregiving was your expertise,

20:11

it's so different. And I think

20:15

it's just being staying in tune

20:15

with what's going on and not

20:19

looking for, oh, that, you know,

20:19

saying, you know, not trying to

20:24

find a reason, you know, what

20:24

the reason is for that change in

20:28

behavior. It's not because they

20:28

suddenly are, you know, this or

20:33

that, that it's not that their

20:33

personalities changes due to the

20:36

that disease. And it's so

20:36

difficult because it does

20:39

manifest differently with

20:39

everybody. You know, I look at

20:42

Michael J. Fox, that's one thing

20:42

your husband was another thing,

20:45

my mom is another thing, and

20:45

there's a million different

20:47

ways. So I guess it's just being

20:47

able to just roll with the

20:51

punches and know that it's not

20:51

necessarily them. It's the

20:55

disease. And I think that that's

20:55

helpful when, when having to

21:00

caregiver, for somebody, that's

21:00

really true, being able to, I

21:04

use the word before nimble,

21:04

which means to, in my mind, to

21:08

be able to just let it come as

21:08

it does. And respond to it in

21:12

the moment. It's something that

21:12

I've learned recently, and then

21:15

I've been working on and talking

21:15

with, with other people about is

21:18

that actors who learn improv,

21:18

learn to say, yes. And and there

21:27

are people talking about that.

21:27

Just say yes, and there's a good

21:32

TED talk about it. And that is

21:32

as a response to what comes by

21:37

as a person has dementia and

21:37

presents you with?

21:43

You're not my daughter, what did you do with my daughter? Exactly,

21:45

exactly. That's beautiful. I

21:49

come with a an acting

21:49

background, and an improv

21:52

background, I did it for a very

21:52

long time. And so that makes so

21:56

much sense. That's a beautiful

21:56

way to frame it. You know, I was

22:00

trying to think of the terminology when you were talking about your husband, you

22:02

know, move getting into his, his

22:06

sailor self. And that, you know,

22:06

is cognitive reserve, like we

22:10

have, everybody has a cognitive

22:10

reserve, like my mom was a

22:14

singer. So, you know, you know,

22:14

she couldn't remember anything,

22:18

but you, you start singing, you know, our love is here to stay, and

22:21

she's on it, you know, and so

22:26

that's her cognitive reserve,

22:26

whereas your husband had this as

22:30

one of his cognitive reserves,

22:30

right? So it's really, really

22:33

imprinted. And so that's that it

22:33

and that does get very

22:38

confusing. Because the feet,

22:38

they they appear to be

22:43

themselves. Until they're not,

22:47

not moments. Yeah.

22:51

Especially because you think the

22:51

MP is always missed. So exactly.

22:56

Where are you? And it's gone

22:56

that quickly. Yeah. So how did

23:00

you write that? And how long?

23:00

Let's let me back up. How long

23:04

did you have a marriage? Really?

23:04

You know, when we were married?

23:08

I count on my fingers. 11 years.

23:08

And I would say that Parkinson's

23:12

was the third party in that

23:12

marriage for the last eight of

23:15

those 11 years. So you had about

23:15

three

23:20

really good years was a

23:20

symbiotic kind of relationship.

23:23

And then then it started

23:23

chipping away. That's right.

23:27

Wow, you your debts quite a

23:27

hero. And that's quite

23:33

a task you took on that most

23:33

people I don't think could have.

23:37

I mean, you're very special. It's very,

23:41

I don't, I don't feel

23:41

like it's something special so

23:45

much is that this was just

23:45

working. And we found a way to

23:51

still be together, as he changed. And one

23:53

of the things I had to learn as

23:58

a caregiver is that the job of

23:58

meeting him became more and more

24:02

a one sided job in, at least in

24:02

our fantasies. A good marriage

24:08

is give and take and give and

24:08

take. But firstly, my experience

24:12

was that and that's what I said

24:12

to myself in the mirror, there's

24:15

no give. It's just received. And

24:15

this is just coming to me as I'm

24:22

saying, this is a difference

24:22

between my holding back and his

24:25

taking, and my being ready to

24:25

offer so that he can receive.

24:31

Right and maybe

24:31

that's a way of thinking of

24:34

dementia caregiving, the more

24:34

that we can offer what the

24:37

person can receive. Did you ever

24:37

become resentful? And if so, how

24:42

did you deal with those

24:42

feelings? I mean, what are you

24:44

guilty for being resentful? Or

24:44

maybe you never were resentful

24:48

for the lot you were in.

24:51

Sync I still resentful.

24:51

I've said to other people that

24:53

there was never a day when I was

24:53

sorry to have married him. And

24:57

there were days when it was

24:57

hard. It was hard.

25:00

You know, enough to keep me you

25:00

know, in tears. And yet, I was

25:05

never sorry, I never felt that

25:05

it was so the state to marry my

25:08

husband. And I can't I mean, I

25:08

know that plenty of situations

25:12

people do feel that they made a

25:12

mistake by by joining in on a

25:17

marriage to someone who has dementia such as Parkinson's or

25:20

Alzheimer's or some other form

25:23

of dementia. And I have

25:23

certainly advised people who are

25:26

thinking, I fall in love with

25:26

this person. He's got

25:29

Parkinson's, what should I do?

25:29

Should I marry him, I love him.

25:33

And I think it's really

25:33

important. And part of my sense

25:37

of responsibility is to say,

25:37

these are the facts as I know

25:40

them. These are the ways that

25:40

you can inform yourself. And in

25:44

fact, I even write about that in

25:44

the last chapter in the second

25:47

to last chapter of my book,

25:47

where I talk about the fact that

25:50

you are free to say no.

25:54

And I firmly believe that you can't really say a meaningful Yes,

25:56

unless you feel free to say no,

26:01

even to something as central as

26:01

caregiving. Also, I think,

26:06

what's what's different and sets

26:06

you apart, maybe I'm wrong, is

26:11

that, you know, I can imagine

26:11

somebody who's had a long

26:15

history, you know, you got

26:15

married, you've been together

26:19

for 20 years, 25 years, and then

26:19

they contract Parkinson's, and

26:25

now you've got all this history

26:25

to carry you. Right. So you made

26:29

history in three years. And

26:29

that, and that was your, that

26:34

was your base. And that's why I

26:34

do think it's extraordinary,

26:38

because, you know, you

26:41

you had to really live in the

26:41

moment and, and really make that

26:48

history and, and, and make it

26:48

the value that you wanted out of

26:53

it. Because, you know, it really

26:53

is I mean, I know that I hear

26:58

what you're saying and that you don't think you're extraordinary, I think you are.

27:00

And I'm a very, I'm a very

27:04

empathetic person and very

27:04

giving like I really caregiving

27:07

for my mom for the whole time.

27:07

But I still think as a couple,

27:12

it's different. And I could walk

27:12

away when my mom would lash out

27:16

at me, as you saw in the movie,

27:16

I could, you know, it took a

27:21

while to learn it. But I also

27:21

had the history and she's my

27:24

mommy.

27:26

And staffers, three, I

27:26

think that history makes a big,

27:30

big difference. If people can

27:30

look back on a satisfactory

27:34

marriage, no, marriage is

27:34

perfect. But if people can look

27:37

back on a marriage that has met

27:37

their needs, and they felt feel

27:41

that they've met their partner's

27:41

needs, then there is a kind of

27:44

almost like a relationship bank.

27:44

And that bank helps to

27:50

give them something to draw on.

27:50

I encourage people, if they've

27:53

learned if a diagnosis right

27:53

away, start taking pictures,

27:56

making voice recordings so that

27:56

you have those things. I have a

28:00

couple of very, very precious

28:00

recordings of my husband's voice

28:05

speaking to me, and one very

28:05

special case reading to me. And

28:10

there were days when that's what

28:10

held me together, listening to

28:13

that.

28:14

And so you had that

28:14

foundation, you had that

28:17

foundation, that you knew that

28:17

this wasn't just a flimsy house.

28:21

There was a there was a

28:21

foundation there. And so when

28:24

the wind blew up, yeah.

28:29

Yeah. Wow. Wow. Again,

28:29

so let me go back to again, what

28:34

you said about caregiving and

28:34

care, care partnering, what how

28:39

do you define that? Those two

28:39

different I think they're, you

28:42

know, that's in the title of my

28:42

book, because as I thought about

28:46

it, to be a care partner means

28:46

that there's a project in

28:50

enterprise that you and the

28:50

person who has the disease are

28:53

working on together, whether

28:53

it's somebody who can still

28:56

prepare their own meals, or

28:56

track their own medication, and

29:00

you take on things that they

29:00

cannot take on for themselves.

29:04

And sometimes you do it just

29:04

because you can and because you

29:07

want to. And sometimes you do it

29:07

because there really is no other

29:09

choice. But when you and the

29:09

other person are both engaged in

29:14

managing or combating if you

29:14

can, a disorder that's being a

29:18

care partner. When the person who has

29:21

Alzheimer's or Parkinson's loses

29:25

the ability to participate in

29:25

their own care, I think you'd

29:29

become a caregiver. And that's a very important

29:32

change in how you think about

29:36

what you're doing and how you

29:36

feel about what you're doing.

29:38

Because all of this I was saying

29:38

before all of the offering the

29:43

giving, the doing comes from one

29:43

side

29:48

right. You did write

29:48

a book Love dignity and

29:51

Parkinson's from care partner to

29:51

caregiver, why the book what at

29:55

what point did you decide I have

29:55

to write about this and

30:00

And was that more for yourself?

30:00

I don't think so because I know

30:05

who you are. I think it was for

30:05

others or both.

30:09

Yeah, tell us about, I

30:09

wrote it for myself, I wrote the

30:12

book that I wished I'd had. And

30:12

I hear that a lot. I just

30:16

thought, you know, somebody needed to have said

30:18

this, and nobody had said it.

30:22

And so I did it. And I guess I'd always

30:25

wanted to write a book. And that

30:30

was the book that came.

30:32

Yeah, I've

30:32

heard that a lot from from

30:35

authors that say, I wrote the

30:35

book I wish I had.

30:40

And I often tell them, when we

30:40

interviewed them is that you

30:42

wrote the book, I wish you I

30:42

had, when I was going through

30:46

this, because, you know, now I'm

30:46

discovering all these wonderful

30:53

books and authors. But when I

30:53

was going through it, I had, you

30:56

know, I was really blazing,

30:56

blazing my own trails, I didn't

31:00

know, I really didn't know what the

31:01

hell I was doing. To be honest

31:04

with you. It was, you know, I

31:04

was learning as I went,

31:08

absolutely. And when you're in

31:08

the middle of it, you don't have

31:11

the time to go to the library,

31:11

you don't have some time to

31:13

research. And so the information

31:13

really, the more that someone

31:17

can hand you something and say,

31:17

This is a place to start. This

31:21

is information that will help

31:21

you to understand where you are,

31:24

where you are, what's happening

31:24

around you, and how you can

31:27

manage it. And so, hopefully,

31:27

I'm saved other caregivers, a

31:32

lot of the effort and a lot of

31:32

the anguish that are, you know,

31:35

for me, we're part of being a

31:35

Parkinson's, you've turned

31:39

yourself into a caregiver for

31:39

our care partner, rather, with

31:45

other care partners givers. So

31:45

you've been able to to put

31:50

yourself in that position. And

31:50

so what what else do you do? I

31:55

know you do a lot, but why don't

31:55

you tell us what else you you've

31:57

been doing in this realm?

32:01

Well, in addition to

32:01

having written the book and

32:03

trying to let people know about

32:03

the book, I've recently started

32:07

an online program and email

32:07

programs so that caregivers can

32:11

get a step by step, mental reset

32:11

that I call rest, and refresh.

32:17

Because finding rest is one of the

32:18

hardest things when you're a

32:21

full time caregiver, there's

32:21

never the opportunity to let go

32:25

of the responsibility to let go

32:25

of the needs. And so this 21 Day

32:28

Program is one of the things

32:28

that I've created on my website

32:33

is other things. But basically,

32:33

what I want to do is offer

32:37

caregivers, resources and

32:37

information and ideas and

32:41

support so that they don't just

32:41

feel alone, and they don't feel

32:45

so

32:46

isolated. And like

32:46

their infant reinventing the

32:50

wheel. When you say I need a

32:50

break, or I need to, you know,

32:53

there's guilt involved in that.

32:53

Because it's like how, if I'm

32:57

not spending every waking

32:57

moment, and every sleeping

33:00

moment dealing with this, then

33:00

I'm not a good caregiver. And

33:05

that's not the truth. What are

33:05

some of the tips, you could

33:09

simply that you can give a

33:09

caregiver that that will allow

33:12

them to, you know, break off for

33:12

a moment and be okay, it's a

33:16

mindfulness.

33:18

I think it is

33:18

mindfulness. But I think that

33:21

when you recognize that this is

33:21

what's happening, it's not my

33:25

job to fix this. And the myths

33:25

of caregiving is that if I'm

33:31

good enough, if I love hard

33:31

enough, if I sacrifice enough,

33:35

my partner will return to me and

33:35

say, I have what I need. Thank

33:40

you. And that life will, again

33:40

feel balanced. And what I'd like

33:44

to tell people is that it

33:44

becomes something different than

33:47

that, it becomes recognizing

33:47

that this inability to fix the

33:53

situation is where you are,

33:53

that's what you're looking at,

33:57

and finding ways and I give

33:57

people ideas about ways to say,

34:01

this is what is and it's not my

34:01

job to try to fix it and freeing

34:06

yourself of that. Responsibility

34:06

freeing yourself of that. It's

34:11

really a myth that you can do

34:11

with all means that you're free

34:15

to choose. This one. Yes. This one no, this

34:16

one not this time. Hmm. That's

34:23

good.

34:25

That's really good.

34:27

Because you see, I

34:27

know you went and you also felt

34:30

like you could fix it. You could

34:30

say I can, I can talk my mom out

34:34

of Alzheimer's. I can teach her

34:34

out of Alzheimer's. And, and I'm

34:39

sure with Parkinson's the same

34:39

way you can't talk them out of

34:41

it. You can't teach them out of

34:41

it. It is what it is what it is.

34:45

Yeah. And it's really going

34:45

moment to moment. And saying,

34:49

Okay, I'm doing my best and also

34:49

could do Yeah, and what you were

34:53

saying about you know, choosing

34:53

what you can or will do and

34:57

being able to say I don't want

34:57

to do that.

35:00

You know, I

35:00

remember when my mom became

35:02

incontinent, and I was like, I

35:02

don't think she would want me to

35:08

address that. And I don't think

35:08

I want to, I'd rather ask for

35:13

help with that. And I didn't feel guilty about

35:15

it, because I just made that

35:19

decision. I was there for her

35:19

for so many things. When I know

35:23

what I was good at, and I know

35:23

what I could give to her,

35:28

to make her have a better life,

35:28

or as better better, you know,

35:31

as good a life as she could

35:31

while she was alive. So,

35:35

but I did make those choices,

35:35

and I think you have to for your

35:38

union and think it's okay. You

35:38

know, some people say, Oh, I

35:42

could never clean my mom's

35:42

mouth, and I'm like, get me in

35:45

there. I'll get right in there.

35:45

But for some reason, you know,

35:49

they can't do it, but I can, and

35:49

I didn't want to deal with the

35:52

incontinent. And because I felt

35:52

like my mom, and I maybe it was

35:56

my own, you know, projection

35:56

that, that she would feel

36:01

embarrassed or less than lose

36:01

her dignity, lose her dignity.

36:08

I think each person is

36:08

different. I mean, I had the

36:12

experience myself that the

36:12

incontinence, I was able to

36:16

manage that at some point, I

36:16

said to my husband, you're not

36:18

doing anything that I don't do.

36:18

We all have bodies, and this is

36:21

what bodies do. But there were

36:21

other forms of professional care

36:24

that I just found

36:24

extraordinarily difficult. And

36:27

giving my self permission to

36:27

like, I never learned to shave

36:32

him. Thank goodness, he had

36:32

mostly a beard because I never

36:35

shaved him well, guy. And being able to say, No, I use

36:37

the image that if you're part of

36:42

Team to you and said, Who's that

36:42

refrigerator? I don't like where

36:45

it is, you wouldn't have any

36:45

qualms about saying, No. I know

36:50

you want me to, but I can't do

36:50

that. Right.

36:54

Right. That's a

36:54

great metaphor. You know, so I'm

36:58

sure there's time many times you

36:58

feel like you're all alone, you

37:01

know, literally all alone in

37:01

this in this battle.

37:06

Is there anything you can do

37:06

like as far as employing the

37:09

help of family or friends? to I

37:09

mean, what kind of support would

37:14

you want? Obviously, that you

37:14

don't want them to come in? And

37:18

and, you know, and change, or

37:18

and shave him? No, but what how

37:23

can they support the caregiver?

37:23

Maybe, I think that's so

37:27

individual that is going to

37:27

really vary from person to

37:30

person and from family to

37:30

family, I actually write about

37:33

this idea of being a secondary

37:33

caregiver and the unspoken guilt

37:38

that secondary caregivers feel.

37:41

And that there are ways

37:41

that they can step in without

37:43

feeling like they have to take

37:43

on the primary responsibility

37:46

for caregiving. And giving that

37:46

caregiver opportunities for rest

37:51

are the most important things

37:51

even more important to any

37:54

individual service, taking over

37:54

the responsibility long enough

37:59

for the caregiver to half an

37:59

hour or an afternoon or week

38:05

that they're free of the

38:05

caregiving restless. Yeah, the

38:09

biggest.

38:10

See, that's really good, because a lot of like, I didn't this happens a

38:12

lot to happen in my situation

38:15

that, you know, one person

38:15

becomes the caregiver, and

38:19

everybody else just, you know,

38:19

goes along there. What, yeah,

38:25

they drift away. And, you know,

38:25

and I think it's because I'm

38:32

guessing I have no, I have no

38:32

clue. But I'm think that if you

38:36

could assure them that you're

38:36

not asking them to take on the

38:39

full the full bore, you know,

38:39

that you're just saying whatever

38:43

you can, if you can come in,

38:43

and, you know, give me a set,

38:48

you know, give me a minute. It's

38:48

like, it's like, my daughter has

38:51

two little babies now. And you

38:51

know, if I'm happy to go in and

38:57

you know, give her some

38:57

restless, but I'm certainly

39:00

can't go in and take over, nor

39:00

would I want to know what she

39:03

wants to want me to. And I think

39:03

we need to frame it. So we

39:06

realized that, you know, it does

39:06

take a team of people and and

39:12

whatever you can give as a

39:12

secondary caregiver is well

39:15

appreciated, whatever it is.

39:18

Right? I think that's

39:18

right. The secondary caregiver

39:21

really helps to share the burden

39:21

and gives the caregiver the

39:25

opportunity to offload some of

39:25

the things. Yeah, can I talk

39:28

about one other resource that

39:28

really saved me more times than

39:32

I can say, which is that the

39:32

online community of caregivers

39:35

is so powerful? Yes. And makes

39:35

such a difference. There's like

39:40

groups like like Parkinson's,

39:40

better halves, and my

39:42

Parkinson's and all of these

39:42

gives you the opportunity to go

39:47

someplace and say, I can't do

39:47

this anymore, and I hate my

39:50

life. And then there'll be 15

39:50

people who say, sweetie, I

39:53

understand Let's breathe

39:53

together for a minute. And that

39:56

sense of being accompanied in

39:56

the role of

40:00

Caregiving,

40:00

I think makes a very big

40:02

difference when you're in the

40:02

weeds and doing it day after

40:05

day. So agree with you. You

40:05

know, I mean, look at Al Anon

40:09

it's been it that was so

40:09

success. That's like a great

40:11

program for people that are

40:11

dealing with something that that

40:14

is not their problem. But how do

40:14

we deal with it? How do we

40:18

accept it? How do we accept that

40:18

we can't change it, but we can.

40:24

We can support it in a way that

40:24

is healthy

40:28

for us and for them. And I think

40:28

that's super important. Yeah,

40:33

you there has to be support. And

40:33

you need an outlet, you need to

40:38

be you need to be cathartic and

40:38

have a place to that you feel

40:42

safe to do that. Because there's

40:42

a lot of guilt in saying, I'm

40:46

overwhelmed. And I hate this

40:46

day, and I hate, I'm angry. And

40:51

you know, there were times when

40:51

I wanted to, I literally, my mom

40:54

was tiny, and I was like, I'm

40:54

going to pick her up, and I'm

40:58

going to put her in her bed. And

40:58

she's gonna go for a timeout.

41:02

That's it. You just want to run away from

41:04

home sometimes. And it's so

41:07

wonderful to say that and to

41:07

have 35 people online say, Me

41:12

too. You bet. Yep. Did I feel

41:12

better? Yeah, you do. Because if

41:18

you don't talk to other people,

41:18

you don't know that you're,

41:21

you're normal. That's normal.

41:21

You know, it's why we made the

41:25

movie because look at my mom, I

41:25

adore my mom, and my mom adored

41:31

me. And yet there she is calling

41:31

me a whore.

41:36

Right? And how do you? Like, I mean, I wanted people to

41:39

see that, that that, you know,

41:42

we can ride that wave? And that

41:42

doesn't mean any, it doesn't

41:46

mean anything. It's not real.

41:46

Right? Not real,

41:52

hard lesson to learn to

41:52

be able to step back from it and

41:55

sort of observe.

41:57

It is and isn't

41:57

there times where you where, you

42:00

know, yes, you want to talk

42:00

about it. You want to share how

42:03

you're feeling it. But there

42:03

aren't there times where you

42:05

just don't want to think about

42:05

it. You don't really want to

42:08

talk to a friend and talk about

42:08

anything else. But that. And I

42:11

think for people who are friends

42:11

of the caregiver, they don't

42:14

know it to you. Like what to say

42:14

what to, you know, do we want to

42:20

talk about this? Or do you want

42:20

to talk about anything else?

42:23

What are there any suggestions

42:23

for friends of the caregiver

42:27

when they're when just talking

42:27

with somebody who's in that war?

42:31

Well, I think it's always a

42:31

reason reasonable to say I'm

42:34

sorry that you facing something

42:34

so tough. What's on your mind

42:38

right now? What would you like

42:38

to do right now and then put it

42:41

in the caregivers hands to say,

42:41

let's talk about playing bridge

42:45

or buying a new outfit for ya.

42:45

Chico's? Let's go to Cheetos.

42:53

Let's have

42:53

a margarita. Retail therapy. As

42:56

always, I am a big fan. I'm a

42:56

big fan.

43:01

Read retail therapy and works

43:01

for me makes no difference.

43:05

Yeah. And also you're you you

43:05

like meditation. I see that

43:10

about you. And you you actually

43:10

offer a method of meditation

43:14

that you can download on your

43:14

website. Do you want to talk

43:18

about

43:19

it have a slightly it's

43:19

a free meditation because I

43:22

thought that it's it's really

43:22

designed to give caregivers a 10

43:26

minute break. Fine, I suggest

43:26

find a moment when your person

43:31

is asleep or when your person

43:31

is, you know within someone

43:35

else's care or that precious

43:35

precious time between finishing

43:39

the grocery shopping, and

43:39

turning the ignition and going

43:42

home and sitting in your car for

43:42

about 10 or 15 minutes, listen

43:46

to this meditation and just be

43:46

somewhere else. And it's

43:50

amazing. How much difference

43:50

just the mental break can make.

43:56

And how you manage the day to

43:56

day physicality is caregiving.

44:00

Right. I

44:00

find it so difficult to

44:03

meditate. For me it's so hard

44:03

and I want to do it. And I I

44:08

know there's a way but do you

44:08

have any tips on that? Because

44:12

there's like, Dawn is my best friend. We

44:14

decided decidedly we were going

44:18

to learn how to meditate. And we

44:18

went to this studio that is all

44:22

meditation. And we could not

44:22

look at each other because we

44:26

weren't going to break into

44:26

laughter because we were like,

44:30

are you meditating? Not me.

44:30

Neither.

44:34

Everything

44:34

everything else. I haven't.

44:39

Yes, please do tell.

44:39

There's a very interesting

44:43

phenomenon called laughter yoga. And it was started in India. I

44:48

actually was trained in laughter

44:52

yoga many, many, many years ago

44:52

and I won't even try to show you

44:55

how it's done. But essentially

44:55

it's using the

45:00

sounds and breath of laughter to

45:00

disconnect from your life. And

45:06

you can just look it up.

45:06

laughter yoga Google. For us. It

45:11

was really funny and it will make a big

45:12

difference. I'm going to tell

45:19

you also

45:19

went to it. I dragged on into

45:21

everything. He's my, he's my BFF

45:21

I am single ever after he's been

45:26

through everything with me. And

45:26

I continue to drive. I you know,

45:29

I'm, he's Ethel to my Lucy. And

45:29

I said, we're gonna go take a

45:33

yoga class. And I'm very, I'm

45:33

very high energy. I do hip hop

45:38

dancing. I do step aerobics, you

45:38

know, but I need to get mindful,

45:43

right. So we go into yoga class,

45:43

and we're in some downward dog

45:47

position. And of course, I

45:47

cannot look at him. And we are

45:51

squished up against the floor

45:51

and we just start laughing but

45:54

we're holding it in. It's like

45:54

when you're in like a just a bad

45:58

time to have the giggles the bad

45:58

time. Well, we got kicked out of

46:01

class. Yeah, we might run out of

46:01

a teacher. Because I think

46:06

you're I don't think this is not

46:06

for you.

46:12

It's really a lot of fun. Oh, my

46:12

God. Funny hired me to do a

46:18

video about laughter

46:18

yoga for part two with Terry's

46:23

will be

46:23

your guinea pigs because we are.

46:25

We were all we want to do is

46:25

laugh. Okay. Yeah, I have a

46:30

friend who knows a lot about it.

46:30

And maybe we can have a little

46:32

conversation about laughter You

46:32

should do that. We should do a

46:35

live we'll do a live or

46:35

something to get everybody. When

46:39

that'd be fun. That would be

46:39

great. Yeah, I think it'd be

46:43

great. Listen, you guys, I am a

46:43

type. I'm high energy. It's so

46:47

difficult for me to slow down

46:47

and to like, but it's you know,

46:51

but laughing laughing laughter

46:51

like they say is good medicine.

46:55

It's great medicine. I mean,

46:55

that is that changes your

46:58

endorphins. And it changes your

46:58

everything. I highly recommend

47:02

laughing.

47:04

Great. Well, I expect

47:04

to report on laughter yoga.

47:10

Does that ever come

47:10

into play when you're in the

47:12

middle of this and everyone

47:12

knows that you're in a in a very

47:17

hard situation. And if you

47:17

happen to get away, or I don't

47:21

know, for one evening, and you

47:21

go to dinner, and you're

47:23

laughing? And you're taught

47:23

there? Was there ever a moment

47:25

where you say, Oh, I shouldn't

47:25

be laughing? I shouldn't be

47:28

enjoying myself.

47:30

There's something

47:30

serious going on here. i And how

47:34

do you get out of that? If you

47:34

do? Well, I think many

47:37

caregivers do have that feeling

47:37

that I'm not entitled to any joy

47:41

or any recreation or because my

47:41

partner is suffering. And I

47:47

think that's mistaken. Because

47:52

ultimately, the Parkinson's, the Alzheimer's

47:54

is their journey. And it's not

47:59

your journey. And even if

47:59

you've, you know, flesh of my

48:01

flesh and bone of my bone, you

48:01

still are separate people. And

48:06

you don't have the disorder.

48:09

And you are free to be human in

48:09

your own way. And that means

48:13

joy. I think if I were feeling

48:13

super guilty about that, I might

48:19

make it make a point of thinking

48:19

about something that gave my

48:23

husband a sense of satisfaction

48:23

and relaxation. My husband

48:27

really liked to have his hands

48:27

and arms massaged and calm to

48:30

him food to him. And so I might

48:30

make it my business to do that

48:35

and give him some measure of

48:35

contentment and comfort that

48:39

suited what he was capable. I

48:39

think sometimes caregivers

48:44

bring their

48:44

partners along for those events

48:47

thinking well, I'm gonna go have

48:47

fun. So I've got to bring him

48:49

with me so he can have fun too.

48:49

But it doesn't work. And then

48:53

you're both end up kind of

48:53

frustrated and unhappy. And so

48:56

it's so refreshing to know, this

48:56

is this is mine. Oh, Terry,

49:03

that's such a good point. That's

49:03

such a good point. I you just

49:07

triggered a memory of mine.

49:07

Taking my dragging my mom to

49:11

things that I thought that she

49:11

would enjoy. And she didn't

49:15

because she could she wasn't

49:15

capable of it. It was too

49:18

overwhelming. It wasn't it just

49:18

wasn't appropriate. And I it was

49:22

a disappointment for all of us.

49:22

You know, and on the other hand,

49:25

I mean, I'm going to tell the

49:25

story just because I learned a

49:27

lot from it. When my husband's

49:27

older daughter got married, he

49:31

worked very, very hard to write

49:31

a toast to her and it was

49:34

absolutely spectacular what he

49:34

was able to do, practice and

49:37

practice. We went to the wedding

49:37

together and it was very clear

49:41

to me that I was there to help

49:41

him participate in his

49:46

daughter's wedding. And I did it

49:46

in a fancy dress. But I was

49:50

really clear in my own mind that

49:50

I was not there for a sip of

49:54

champagne or a bit of wedding

49:54

cake and once I let go of that,

49:59

I would say

50:00

able to be comfortable

50:00

with being there as his person.

50:03

But if I had gone there

50:03

thinking, Oh, it's wedding, I'm

50:07

gonna participate, it would have

50:07

been so unhappy and so

50:11

frustrating. And again, neither

50:11

of us would have felt very, very

50:15

engaged or very happy. And the

50:15

way it ends up, it's a very warm

50:18

memory that I hold very close,

50:18

how well things went shows.

50:24

That's awesome. That's a great, that is a great lesson. Because you, you

50:25

don't set yourself Self up to

50:29

lose, you set yourself up to

50:29

win.

50:33

And I think going

50:33

back to just a little bit back

50:35

was that I think it's important

50:35

to hopefully that the person

50:39

that you're, you're caring for

50:39

your loved one doesn't want you

50:43

to be miserable. They don't want

50:43

you to, to not enjoy life.

50:48

That's the last thing they want.

50:48

And I think it's sometimes we

50:51

forget that that they don't want

50:51

you to, you know. And so

50:57

there are some that

50:57

that wants you to be miserable.

51:00

Yeah, that's probably that way

51:00

before Parkins, you know?

51:03

Exactly, exactly. Yes. They were

51:03

in romping awful before. They're

51:07

going to continue to be grumpy and awful.

51:10

Right?

51:10

Yeah. That's my movie. My mother

51:13

says to me, she gets lucid and

51:13

goes, Oh, my God, you got to

51:16

live. You got to put me in a

51:16

home. You got to live your life.

51:19

You know. And that was a gift

51:19

that she gave me that night. You

51:23

know, and I was like, Oh, you're

51:23

going?

51:27

But not? Not yet. Not yet. Yeah.

51:27

But you know, so I tried to

51:34

bring humor into everything,

51:34

because I knew that was a

51:37

language that my mom spoke. So humor is very helpful, like

51:39

music, like things that are

51:46

visceral, that can get in you've

51:46

defined things that open those,

51:51

those those doors that look

51:51

locked.

51:55

Yeah, I think that's

51:55

right, and finding your weights.

51:57

And then if I talk about finding

51:57

a way to reach in past the

52:00

dementia, and find the person,

52:00

and when you can have those

52:05

moments you feel connected

52:05

again, and learning how to just

52:10

walk psychologically walk past

52:10

the craziness, of being called

52:15

all sorts of awful names. And

52:15

remember, how do you feel about

52:20

your daughter, as she's yelling

52:20

and screaming at you, she's

52:22

likely to say, Oh, my daughter

52:22

is the sweetest thing that you

52:25

you're a horrible person. And

52:25

that's weeding your way past the

52:29

dementia craziness. That's an

52:29

offensive word craziness, but

52:33

the past the dementia, and

52:33

reaching in and tweaking the

52:38

connection that that person

52:38

feels with you. Right.

52:42

And just

52:42

just to, to validate what you

52:44

said about craziness. It's not I

52:44

mean, it is craziness in terms

52:48

of like, it's not what you're

52:48

used to. It's not what they're

52:51

used to. It's the way that this

52:51

disease manifests. So it's not a

52:55

it's not a judgment on the

52:55

person. It's a judgment on the

52:58

disease. And the disease is the

52:58

culprit in the diseases is the

53:02

Laos. Yeah. It's a crazy

53:02

situation. It is it is and no

53:08

one set up for it. No one goes,

53:08

oh boy, I can't wait to be a

53:11

caregiver. You know, like, like

53:11

Lee, like Lisa given says

53:15

there's no caregiver Barbie,

53:15

there isn't. Nobody should be

53:20

there should be but nobody grows

53:20

up going. I want to be caregiver

53:24

Barbie, you know. But

53:27

but it, you know it but we do we

53:27

grow up and we put our big girl

53:32

pants on and our caregiver of

53:32

Barbie hat. And we go and go to

53:37

work.

53:39

Right? Yes, we do.

53:39

As we do. So what's next? What's

53:44

where are we heading? I mean, I

53:44

know you've got the websites and

53:47

you know, continuing to give it

53:47

any information. And so another

53:51

book in the in the future? Or

53:51

where are we going to tell you

53:55

what my biggest wish is right

53:55

now, I would love to have the

53:58

opportunity to talk to doctors,

53:58

to family doctors and

54:02

dermatologists and to movement

54:02

disorders, doctors about how you

54:07

can engage the caregiver in the

54:07

treatment and care of your, your

54:12

patient. I think that insurance

54:12

and

54:16

given just sort of the way the whole medical system is structured, there really isn't a

54:18

lot of room. And yet, I can say

54:22

that with all the great doctors

54:22

and all the great medical care

54:25

that my husband had. There was

54:25

only one medical person who

54:28

looked me dead in the eye and

54:28

said you are doing a good job.

54:32

Just once. And

54:37

yeah, it should have been more.

54:37

I should have been seen the

54:40

caregiver should be seen by

54:44

the caring technical

54:44

professionals and they don't

54:46

have a pathway into it. They

54:46

don't know how to do it. And I

54:49

would love to get in front of

54:49

those folks and say, here are

54:51

things you can do. They don't

54:51

take too much time. But they'll

54:54

make a difference for you. For

54:54

the person who's doing it caring

54:58

and for your patient.

55:00

beautiful, I love,

55:00

you don't understand, they don't

55:02

understand. I mean, you know

55:02

that sometimes it's like they

55:04

know the physical manifestations

55:04

of the disease, but they don't

55:09

know that connection, which is

55:09

probably the most important

55:12

thing, which is the human side

55:12

of it. That's right.

55:16

The collateral, the collateral that happens. So anything we missed

55:18

that you would like to talk

55:22

about, because this was lovely

55:22

speaking with you,

55:26

I could talk about that

55:26

stuff for days on end, but you

55:29

guys are very thorough, and I

55:29

think that we've made a lot of

55:31

really important points that I

55:31

hope will help caregivers to,

55:36

to feel

55:36

better about this whole process

55:38

for sure. And I really think

55:38

that your, your, your journey is

55:43

is is so unique to what you know

55:43

that I've talked to other

55:47

people, we've interviewed a lot

55:47

of people but going into a

55:51

marriage, knowing taking it on,

55:51

full, you know, fully aware of

55:55

everything is and I'm sure that

55:55

there are many, many others like

55:59

you that have done that, but you

55:59

know, and so or maybe have been

56:03

are on the, you know, on the

56:03

fence about it, maybe they are

56:07

your story can give them a peace

56:07

of mind and give them a

56:11

direction, whether it's one way

56:11

or the other. So I think that in

56:16

that way, it's very, you're

56:16

very, very valuable that way. So

56:19

thank you. Thank you.

56:22

Definitely, well,

56:22

definitely look for Terry's book

56:25

Love dignity and Parkinson's

56:25

from care partner to caregiver,

56:29

visit her website, which is

56:29

seaberry.com and also.com,

56:34

Seabury house.com. We'll put all

56:34

those those. It'll be in the

56:37

show notes. You won't miss it.

56:37

You'll find everything.

56:41

Facebook, Twitter, Instagram,

56:41

all those good things. Yeah. And

56:44

we can't thank you enough for

56:44

being here today. You've you've

56:47

opened our eyes and our hearts.

56:47

And we really appreciate you

56:53

taking the time and sharing your

56:53

your experience in your world.

56:58

Definitely. Thank you. Thank

56:58

you. That was really great dawn.

57:02

She was, I mean, amazing. Not

57:02

only amazing for what she did,

57:05

but just there's no this essence

57:05

to her. That's yeah, she's a

57:09

very calming and gravitas as I

57:09

would you say classy and classy.

57:16

She goes Listen, she shops at

57:16

Chico's that's my favorite

57:20

place.

57:22

If you've seen our our movie, my mom and the girl, Valerie Harper's

57:24

wearing all Chico's in honor of

57:27

my mother, you can see right

57:27

behind you. She's right in the

57:31

middle there on the post. Yeah,

57:31

yeah, he's wearing a Chico's

57:33

jacket. Yeah, she goes, anyway.

57:33

No, she was she was terrific.

57:39

And couldn't it you know, it's

57:39

interesting how things get in

57:42

the zeitgeist, you know, with

57:42

Michael J. Fox, and, and and

57:45

here we talking to someone with

57:45

Parkinson's? It's not come up in

57:49

my purview. No. And now my buddy

57:49

with my Yeah, my mom is now part

57:53

of my world, although it's thank

57:53

God knock all the woods in the

57:57

world. It's staying very minor

57:57

right now. Yeah. I wanted to ask

58:02

her if there was like, a

58:02

difference between like it is

58:06

with Alzheimer's, like an early

58:06

onset Parkinson's, as opposed to

58:09

your mom being in her 80s. And

58:09

well, I mean, Michael J. Fox got

58:13

it when he was very young, very,

58:13

very young. And yeah, and I

58:17

don't we don't know how long my

58:17

mom's had it, you know, but if

58:21

it's not, man, I can't I don't

58:21

can't imagine it any more than

58:24

three or four years. I mean, I

58:24

can't imagine it's wasn't it's

58:27

not manifest and, and right now,

58:27

they're saying it's yeah, it's

58:30

just kind of remaining. You

58:30

know, where it is. But, you

58:33

know, it's, but it's amazing how

58:33

similar some of the, you know,

58:37

between Parkinson's and

58:37

Alzheimer's. Yeah. Sounds like

58:40

there's a lot of similarities as

58:40

far as on the caregiving and

58:43

there's definitely and then even

58:43

in with with the documentary,

58:47

you know, when I talk about

58:47

ableism, I mean, Parkinson's,

58:51

dementia, same kind of of bias,

58:51

because because it does affect

58:58

the cognitive abilities. So once

58:58

once that's in question,

59:04

you know, the respect that is

59:04

afforded is,

59:09

is not to be found. That's true.

59:09

So anyway, but I in honor of us

59:16

today, because I'm all about

59:16

what does it say? Dawn? There's

59:20

it says, oh, V. Oh, wait.

59:24

I know it says love

59:24

and I think you know, it's in

59:29

our it's in our title. It's on

59:29

my shirt, mines and it's in my

59:33

heart and it's on your shirt.

59:33

And, you know, why? Do you know

59:38

why do why don't you tell me

59:38

again? Okay, I'll say and that

59:43

is because love is powerful.

59:43

Love is contagious, and love

59:48

conquers all we really

59:48

appreciate everyone really does.

59:52

Thank you. We hope you like we love you

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subscribe, you share and also

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Please consider possibly making

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donation to No Country for Old

1:00:05

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you know, we don't like to beg

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but we're gonna beg weak

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quality long term care and have

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a wonderful day bye

1:00:27

hey, this

1:00:27

is Susie singer Carter and I

1:00:29

just wanted to take a minute to

1:00:29

talk to you about bed sores. I

1:00:33

know but if you're like I was

1:00:33

you probably don't have a clue

1:00:36

what a bed so really is. Most

1:00:36

people don't. I mean, no one

1:00:39

told me and I really just

1:00:39

assumed it was part of the body

1:00:42

that was like the name says sore

1:00:42

from Lane in one position too

1:00:47

long. And then if you change the

1:00:47

position all better. Wrong. That

1:00:51

sir is really a euphemism for

1:00:51

more appropriate names such as

1:00:54

pressure wound, and to keep it

1:00:54

as ulcer. Unfortunately, I

1:00:58

discovered what a bedsore really

1:00:58

was. When my mom was admitted

1:01:01

into the hospital last year with

1:01:01

a stage four ulcer, that is the

1:01:04

worst level, you don't ever want

1:01:04

that to happen. bed sores can

1:01:08

develop quickly and worsen

1:01:08

rapidly and can lead to serious

1:01:11

health issues, even death if

1:01:11

they're not properly treated, or

1:01:15

properly treated. And that

1:01:15

includes cleaning and dressing

1:01:18

the wound, but most importantly,

1:01:18

reducing pressure off the sore

1:01:22

by frequently changing the

1:01:22

position of the person off of

1:01:25

their wounds so it can heal and

1:01:25

that can mean propping the

1:01:27

person up 30 degrees to the

1:01:27

side, far enough to be off the

1:01:31

lower back, but not too far as

1:01:31

to be on the side hip where

1:01:34

there isn't much cushion right

1:01:34

between the skin and the bone.

1:01:37

This is why I'm so excited to

1:01:37

tell you about that sir rescue,

1:01:40

which was designed by an amazing

1:01:40

woman when jewel a nurse who was

1:01:44

tired of fooling around with

1:01:44

simple pillows and bulky wedges

1:01:47

that just don't work the bedside

1:01:47

rescue positioning wedge

1:01:50

cushions are uniquely designed

1:01:50

to provide ergonomically correct

1:01:54

and comfortable support for a

1:01:54

sustained period of time without

1:01:58

touching the sore and the

1:01:58

curvatures. And bilateral angles

1:02:01

make it possible for the bedside

1:02:01

cushion to be used to support

1:02:04

many other body parts as well.

1:02:04

You can put the heels you can

1:02:07

put it under the head, you can

1:02:07

put it under the arms behind the

1:02:10

knees, both sides. You can even

1:02:10

use it as a breakfast in bed

1:02:14

table the curvatures of the bed

1:02:14

so rescue fit the curvatures of

1:02:17

your person's body and it's made

1:02:17

to meet all the patients

1:02:20

safeties, and bed bound

1:02:20

positioning standards for acute

1:02:24

and long term care facilities. I

1:02:24

wish I had it for my mom, I

1:02:27

really do. So chances are if you

1:02:27

have a loved one in long term

1:02:31

care facility, or at your home,

1:02:31

you may become a pressure injury

1:02:36

soldier too. But bed sores

1:02:36

should never never get to stage

1:02:39

four and one way to ensure that

1:02:39

they don't is to make sure that

1:02:43

as soon as one begins to

1:02:43

develop, you keep the pressure

1:02:46

off. You can do that easily with

1:02:46

beds so a rescue and you can

1:02:49

find bedsore, rescue and many

1:02:49

other pressures solutions online

1:02:52

at jewel nursing solutions home

1:02:52

of the patented bed so rescue

1:02:56

positioning which cushions pads

1:02:56

and pillows that's jewel je w e

1:03:01

l l nursing solutions.com. And

1:03:01

when you use the special code

1:03:05

and C F O P the entire amount of

1:03:05

your purchase will go to support

1:03:09

our important documentary No

1:03:09

Country for Old people which

1:03:12

chronicles my mother's journey

1:03:12

navigating the nursing home long

1:03:16

term care crisis that literally

1:03:16

began with an unreported

1:03:19

untreated pressure wound. So

1:03:19

take the pressure off yourself

1:03:22

and your loved one with the

1:03:22

bedsore rescue