0:00

What about when you are lucky

0:03

enough to find

0:05

love the second time

0:07

around ? Everything is going great , swimmingly

0:10

well . A blended family they

0:12

all get along . Or the people that

0:15

don't get along at least stay away

0:17

from each other Enough for

0:19

the two of you to get

0:22

on the good foot , the sugar foot . You

0:24

know what I'm saying . You traveling

0:27

, you golfing , you

0:29

loving on each other , your friends

0:31

like each other , and then retirement

0:34

you swinging with it , and

0:36

I don't mean swinging like what you're doing sexually

0:38

. Don't stop . Don't stop doing all

0:40

of that . You're having a great time and

0:43

then a few weird things happen , Something

0:46

more than age , and

0:49

you notice that your boo

0:51

, this person that

0:53

makes your life and your world

0:56

really work , ain't quite

0:58

right . What you gonna do about

1:00

it ? Do you pass

1:02

it off , as maybe this is just

1:04

a bit of senility , or

1:06

do you really go to the doctor ? Lean

1:09

in , let's figure out and find

1:12

out what you're missing ? Alright

1:14

, Come on . Come on , it's

1:16

gonna be worth it . Parenting

1:20

up caregiving adventures with comedian

1:22

Daysmiles is the intense journey

1:24

of unexpectedly being fully

1:27

responsible for my mama . For

1:29

over a decade , I've been chipping away

1:31

at the unknown , advocating for

1:33

her and pushing Alzheimer's awareness

1:36

on anyone and anything

1:38

with a heartbeat . Spoiler alert

1:40

I started comedy because this

1:42

shit is so heavy , so be ready

1:44

for the jokes . Caregiver newbies

1:46

, OGs and village members

1:49

just willing to prop up a caregiver

1:51

. You are in the right place

1:54

. Hi

1:56

, this is Zeddy

1:58

, I hope you enjoy

2:01

my torsors podcast

2:04

you okay ? Boosting

2:07

Joy a conversation with unit

2:10

Sykes . Our parenting up

2:12

community is growing so

2:14

fast I can't put out a episode

2:16

as fast as we're growing . So

2:19

text podcast to 404-737-1449

2:23

for updates , exclusives and

2:25

suggestions on topics . While

2:28

you're at it , share an episode with a caregiver

2:30

you love . Review on Apple Podcast

2:32

and follow us on social media

2:34

. Subscribe to our YouTube page , please

2:37

. It really helps . Welcome

2:40

Eunice to the Parenting

2:42

Up podcast . It was such a pleasure

2:44

to meet you . We actually met at

2:47

a function AARP

2:50

and Alzheimer's Association

2:52

of Georgia . We were at

2:54

the function and I was the host . I

2:57

was wearing a dual hat , I was a caregiver

2:59

and a comedian that day

3:01

, and you and I spoke

3:04

a few times . We had a few words

3:06

and then you were kind enough

3:08

to let me get a copy

3:10

of your book . You autographed it for me

3:12

and now you

3:14

are being a guest here . I'm

3:19

not a family , though . After having

3:21

your book , reading it and you

3:23

being a having a conversation

3:26

here with me , I'm like no , no , no , now your family

3:28

. And what I

3:30

really appreciate about your book is

3:34

how much it

3:36

reads and feels like

3:39

I'm going through

3:41

a

3:43

memory album of

3:46

a cousin or

3:48

an auntie or something you know

3:50

, like a photo album , journal

3:52

, rather than a book

3:55

that I grabbed

3:57

off of a shelf of a bookstore

3:59

. So Parenting

4:01

Up family . I want you all to know that

4:03

Eunice Sykes

4:07

went out of her way , I

4:10

believe , to open up her heart

4:12

and share some

4:15

very intimate details around

4:17

her journey as a caregiver for

4:20

her husband . Don

4:22

, let me

4:24

know what made you

4:26

decide not only

4:28

to give a book but

4:31

to give us pictures and

4:34

so many snapshots

4:36

of the nitty gritty

4:39

.

4:41

Well , the title of the book is Boosting Joy

4:43

and of course

4:45

, we've had Don and I

4:47

over 26 years . We've had a

4:50

wonderful marriage , a wonderful relationship

4:53

, a joyful time together

4:55

. I often say he was the

4:57

best husband I ever had and

5:00

certainly the

5:02

snapshots of our lives

5:04

during my

5:07

caregiving with him illustrate

5:10

that we had some wonderful moments

5:13

. We had some

5:15

down moments . I

5:18

questioned what hope was . I didn't know what

5:20

hope was because I was in this disastrous

5:24

terminating kind of role

5:27

, watching my husband turn

5:30

into someone that I didn't know . And

5:32

yet it

5:34

was a boosting joy affair

5:37

and I wanted to share with others

5:39

who were going through that

5:42

it doesn't have to be all doom

5:45

and gloom , that

5:48

you can capture some

5:50

moments that you will relive

5:52

forever . I still relive many

5:54

of those moments and I smile . In

5:56

fact , there was a Facebook

5:59

memory that posted yesterday

6:01

on my Facebook page and it was

6:03

Don and I going to

6:05

a jazz club having

6:08

a date night . Keeping it real that's

6:10

what I called it date night keeping it real and

6:13

it's he and I in

6:15

a darkened jazz

6:19

venue just having a great

6:21

time , and he had Alzheimer's then . And

6:24

so I

6:26

want folk to know that there

6:28

are some joyful moments along

6:31

this journey . You have to often

6:33

find them , sometimes you have to create

6:35

them , sometimes your loved ones

6:37

will create them , and

6:39

those are the joyful

6:42

moments that will boost you forward

6:45

and keep you going .

6:49

Thank you so much for that . I want to back up

6:51

a little bit and say you

6:54

all were married when he was diagnosed

6:56

. What was

6:59

it that was

7:01

happening , what was going on that let

7:04

you know ? Or let your husband

7:06

know ? Okay , you know what

7:08

. Something's happening . We got

7:10

to go to the doctor . This is not a

7:12

normal part of aging

7:14

where he just can't , you know

7:16

, tie his shoe or he can't find his

7:18

wallet .

7:19

Right right . Well , a number of things

7:21

were happening that we

7:24

initially excused , for

7:28

example , my

7:31

husband . When he was driving early

7:33

on in this journey , he

7:36

would get out on the

7:39

county roads and

7:41

he would pull in the traffic

7:43

and then he would take his foot

7:45

off the accelerator and

7:49

then oftentimes he would accelerate

7:52

and he was slow down and

7:54

when he got to a four-way

7:57

intersection , for example , and

7:59

was going to turn , turn

8:02

left , he'd be over in the right hand

8:04

lane

8:07

trying to turn left . Of course

8:09

I was white knuckled all the way when I

8:11

was riding with him , but who knows how many

8:13

times he did this on his own , trying

8:16

to maneuver the traffic . So maneuvering

8:18

traffic was one incident

8:21

. Another incident

8:23

was he

8:27

did not recognize things

8:30

that he should have recognized

8:32

. For example , there was one occasion

8:34

when he was eating in our little

8:37

eating area and I said

8:39

you know he was having a salad , and I said well

8:41

, there's a tomato in there on the counter

8:43

. Maybe you want to put some tomatoes in

8:45

your salad . And so he got up and he

8:47

went into the kitchen and

8:50

he couldn't find the tomato

8:52

. And

8:55

you know , he was in there the

8:57

second or two too long . So I got up and I went

8:59

in there and I said what's wrong , babe ? And

9:01

he said you said there was a tomato in here . I said

9:03

yes , and he said , well , I don't see it . And

9:06

the tomato was in clear sight on

9:08

the counter to his right

9:10

and he did not see that , so he was not

9:13

processing as he should

9:15

. That was not a memory issue

9:17

, that was a processing issue

9:21

. I think the the incident

9:24

that really triggered me that something

9:26

was wrong , because who knows how long

9:28

Don was going through these I call them episodes

9:31

about himself trying to figure them

9:33

out . And I know that he was trying to figure

9:35

them out We'll talk about that a little later . But the incident

9:37

that triggered me . We were

9:39

having a conversation . I was at the kitchen sink and

9:42

he was in the master bedroom and

9:45

we were talking back and forth and

9:47

he came around the corner , out in

9:49

clear view , and in the

9:51

midst of that conversation he lost all

9:55

his vocabulary and

9:58

, instead of responding to what

10:02

I said , he went into a

10:04

bug , bug , bug , bug , bug

10:06

, bug kind of spill . He

10:09

had no language from which to

10:11

capture and say

10:13

what he wanted to say . That triggered

10:16

me and I said I

10:18

don't understand why you didn't respond

10:20

. What's going ?

10:22

on how old was he at

10:24

this time ? About . How old was he ?

10:26

Don was probably in his early

10:29

70s . He

10:32

had been very active all his life . My husband was an athlete

10:35

golfer . He

10:37

was a music closet musician . I call him

10:39

a closet musician . He played the soprano

10:41

saxophone , introduced

10:43

me to the game of golf , walked

10:45

every day Exercise

10:49

, went to the gym the

10:51

perfect picture of health . He was an electronic

10:53

engineer by trade and

10:55

by degree , and electrical

10:58

engineer . We were

11:01

having a normal retirement life

11:03

. I had not quite retired , I

11:05

had left the workforce , but he was retired

11:08

. My husband was retired probably eight or ten years

11:10

before I was . We

11:12

were just having a great time and

11:14

then all of a sudden , these

11:17

things .

11:18

I saw the pictures and

11:20

all I could think when I was looking at the pictures was why

11:23

didn't I run into them in some of

11:25

these places ? Because , as we say where

11:28

I'm from , y'all were putting on a

11:30

show , putting on the dog . It

11:33

was pictures

11:36

of airline tickets

11:38

and luggage . Y'all

11:41

were at parties . Y'all were in fancy

11:43

cars and fancy clothes . I

11:45

was like , okay , you and this , and that Y'all

11:50

were getting it in . I'm gonna tell you what . You

11:52

all did not leave any

11:55

stones unturned . So why

11:57

I am ? I know you

11:59

would prefer for him to be here on

12:01

earth with you . It is

12:03

certain that you all had a

12:06

very good time on your , the

12:08

time that you all did share , and

12:10

that is one of the things that I am hopeful

12:13

that anyone who puts their

12:15

hands on your book boosting

12:17

joy , they're able to see that

12:20

, even after the diagnosis

12:23

, y'all kept it moving . I

12:26

mean , you all kept moving , and that's my

12:28

the next thing I want to ask you

12:32

about how were you able to champion

12:35

that was it ? Was it mostly

12:37

you're doing , was it Don's doing

12:40

? And say , okay , we got this diagnosis

12:42

, we are not about to shrivel up in

12:44

the corner , we're gonna keep going out

12:46

. You mentioned that Facebook

12:49

post was of you going out on the

12:51

date night after his diagnosis

12:54

, but to keep that active

12:56

and to remain alive

13:01

and living . What

13:04

did that take ? How did you do it

13:07

? Whose idea was it ?

13:09

I think it was both of our ideas . Don

13:11

was a funny man . He was a jokester , he

13:14

loved having fun , he

13:16

loved being in company of

13:19

others . We

13:21

took three cruises before

13:24

he went in two cruises and to

13:26

went to a jazz vest

13:28

shortly before he went into

13:30

assisted living . We knew

13:32

that that was on the horizon

13:35

when I was in my care

13:37

partner role early on , we

13:40

talked about a lot of things about what was

13:42

to come after the diagnosis . We

13:45

both admitted that

13:47

it was going to be terminal , but we wanted

13:49

to live our best

13:51

lives better . That's the way I

13:53

put it living our best lives

13:56

better . And so , while he

13:58

could and while he

14:00

was able , we did

14:02

that . Now we we went on a cruise and

14:04

I'm telling you I had some very challenging

14:06

moments , but we did

14:08

that cruise and we

14:10

would have went to the Bahamas on a cruise

14:12

. I went to Alaska with

14:15

some of our golfing buddies on a cruise

14:17

and then we went to the Panama City

14:19

Jazz Fest . Because he loved music

14:21

, loved music . He loved

14:23

playing it , love listening to it . He

14:26

has all kinds of jazz videos

14:29

showing you how to do this and how to do it . He

14:32

was a constant learner . I

14:34

enjoyed that about him . You know he wasn't

14:36

giving up he was fighting , he was gonna

14:38

fight it , and that's

14:41

amazing .

14:43

That's amazing and I think that makes a very

14:45

big difference . I've noticed that with my mother

14:47

, like we're I mean we're

14:50

in year 12 with my mom and

14:53

she recently had a

14:55

stroke wow , about

14:57

six months

15:00

ago , and then about one

15:02

month ago she had two seizures

15:04

and this

15:07

lady just keeps fighting . It gives

15:09

me the courage

15:11

and the energy to fight for

15:14

her and for myself . You

15:16

know , when I'm having a bad mood or

15:18

when things don't go quite right with

15:21

you , the IRS , or with

15:23

a man I thought I was gonna date , that I decided

15:26

I should not date either way , I'm thinking what

15:28

hell , if she can fight through a

15:30

stroke and two seizures on

15:34

top of Alzheimer's , wow

15:36

, I can probably Finish

15:39

my taxes . You know , I can probably

15:41

go ahead and Get

15:45

this joke written . You know , get this

15:47

podcast up and out the , because

15:50

if she's doing all of that Wow

15:53

brain is trying to fail

15:55

her . Let me Put

15:58

, put my , my butt in gear and

16:00

keep it moving . You know , that's

16:02

, that's , that's the least I can do , actually

16:05

, also in her honor , right , I'm her

16:07

kid and Let

16:09

me live in a way that

16:12

honors how she is

16:14

choosing to fight , because

16:16

this is a choice , her spirit is in there and

16:18

she's fighting , and so

16:21

let me , let me be a fighter too . Shit

16:23

, I let's let her

16:25

be proud of me in the way

16:27

I'm Going

16:30

about this , this thing called life

16:32

and she is something else

16:34

that I noticed about

16:36

your Book

16:39

is that you start

16:41

out saying I'm scared

16:44

. I'm starting this

16:46

journal , I'm starting this journey

16:48

. Again , I like

16:50

I'm sharing with the viewers and

16:53

the listeners . It's

16:55

very much a journal , these

16:58

pictures . I Appreciate

17:01

that you change the script , like

17:03

there is , it's an italics and

17:05

then it's in standard text . It's for you

17:07

to people to be able to tell , I believe

17:09

, when you're given Almost

17:13

exact words versus your

17:15

opinion and your thoughts . I'm appreciating

17:17

that the pictures

17:20

are in color . I was like , oh , this is fancy and

17:22

and it's nice

17:25

, nice font size , so people

17:27

should be able to really read it easily

17:29

. Well

17:32

, you take us through the diet , the

17:34

pre diagnosis . Oh , go

17:36

ahead .

17:37

I just wanted to explain that I Kept

17:40

. I've been a writer just about all my

17:42

life and so writing for me is cathartic

17:44

and it's also a learning

17:46

lesson , it's an education . And so I

17:49

kept notes In

17:52

a journal what was

17:54

happening , how I was reacting

17:56

. Was that a good reaction or should I change

17:58

? Should I get me out of the way ? There are so many

18:00

times and I was in the way and

18:03

I was . I was blocking my joy , and

18:05

so the italics Come

18:09

straight from my journal entries

18:11

, that stuff that I wrote down in the

18:13

moment . And

18:15

then , of course , the Regular

18:17

text is what was happening

18:20

and how I was organizing and

18:22

telling the book . Some of the italics

18:24

were Don statement verbatim

18:26

. You know , at one point

18:28

he said I think I'd rather

18:31

have cancer or have a limb cut off

18:33

than to have All timers

18:35

. When he didn't feel that way early on because

18:37

he thought he could beat this disease

18:40

, he was in a very positive

18:42

mood of trying to beat this disease . My

18:44

husband offered to do a clinical trial

18:47

. Of course he wants to do a clinical

18:49

trial . I'll do the clinical trial with him

18:51

because you loved one . Someone

18:53

has to be along 24 , seven

18:55

when you're doing a clinical trial . Very

18:58

, very free

19:01

, emptive

19:03

about what to do and how to do

19:05

it . And I mean , he was a fighter , he

19:07

wanted to live , he wanted to live . He

19:09

didn't want this disease to overcome

19:12

him , and of course it is .

19:15

Yes , you

19:17

are . You take us in the book . You take us through

19:19

pre-diagnosis , through

19:24

his transition . Did

19:27

you all actually discuss and plan

19:30

in Whether

19:32

or not hospice and assisted

19:34

living would would be

19:36

a part of his journey

19:39

prior to His

19:41

cognitive decline ?

19:44

Yeah , what I was care partnering

19:46

and not caregiving . Done

19:50

took the initiative to say

19:53

we need to go San attorney , we need

19:55

to get that paperwork in order . I , I

19:58

, he said I want to do a clinical

20:01

trial . He said when I

20:03

get to the stage where you can no longer take

20:06

care of me , I want to go

20:08

somewhere where I can get 24

20:11

seven care . He

20:13

specified we're kind of caregiver

20:15

. He wanted and All

20:18

of that and so From

20:20

my perspective he was very helpful

20:22

to me in making those

20:24

decisions . I didn't

20:26

have to make them , thinking that

20:29

it would be okay , because when he

20:31

was still in

20:33

reasonable Cognitive

20:36

shape we had those

20:38

discussions . I was

20:40

shocked that he would want to do a clinical

20:42

trial here already reached research that

20:44

and you

20:46

know , I don't know that it prolonged his life

20:49

, who knows . But

20:51

it was something that he wanted to do . In

20:53

addition , he wanted to do that so that he can Contribute

20:57

. He wanted to contribute to the science

20:59

of people of color

21:01

, because those statistics are as

21:03

Large as the

21:06

statistics for the general population

21:08

. You know things that affect

21:10

us that mainly to cognitive

21:12

decline , like that needy , these hard problems

21:15

, those things High

21:17

cholesterol , those things are Are

21:19

in a greater percentage

21:22

For those of us that are

21:24

in the communities of color . So he wanted

21:26

to contribute to that body

21:28

of knowledge as well .

21:31

He is . So I Say

21:34

, is because I I believe that

21:36

our loved ones remain

21:38

with us . So I'm saying he is

21:40

so thoughtful , so intentional I'd

21:43

, so I have you remember , I'm a comedian . I have to

21:45

ask Do you all

21:47

have a son that happens to be unwed

21:50

? Listen

21:54

, honey , I need

21:56

a man that might have some dawn

21:59

in him . And

22:03

I'm not playing . And

22:06

if your husband and if your son is

22:08

married , you just keep my

22:10

number if he gets unmarried

22:13

, we

22:20

were a blended family .

22:21

All the kids were grown and out of the house . So I have a son

22:23

and two daughters and he has a

22:25

son and two daughters , and

22:28

they were

22:30

rarely part of our family unit because

22:32

they had their own lives and they were grown when we , when

22:34

we , married . But

22:36

We've had some good times

22:39

.

22:40

I I see what you mean by

22:42

the best husband you ever had , because you

22:44

got experienced . There was one before

22:46

him . Well

22:49

, you can say with all honesty

22:51

he is the best .

22:56

And my , my children know that too , because my children

22:58

have their own father and they know as

23:01

well that , you know , I say it's

23:03

nothing wrong with the truth , honey .

23:05

It is nothing wrong with the truth . It

23:07

is nothing wrong with the truth . You

23:09

also share with us how

23:12

the pandemic , the pandemic

23:14

of 2019 , 2020

23:17

, with the COVID-19

23:22

, covid-19 that came around

23:24

in 2020 how that impacted you

23:26

. You , when

23:30

I yo , I'm telling y'all bad enough . Family

23:32

, when I'm telling you Eunice lays

23:34

it down , especially

23:37

for those who were

23:39

Caring

23:43

for a spouse . You

23:46

even talk about how

23:48

to move on . What do you do

23:50

? The thought of dating ? It

23:53

is rare , honey . When I say rare

23:55

, I mean rare , like a piece

23:57

of beef that you just got from the butcher

23:59

shop , rare , or someone

24:02

to be willing to talk

24:04

about that in a written form

24:06

. I it's hard for me to get

24:08

Someone

24:11

like yourself to discuss it with me off

24:13

Line

24:15

, so to speak , let alone in a book . So

24:18

first , again , kudos to you . Thank

24:20

you for that awareness and that growth . Talk

24:25

to us a little bit about what

24:27

it was like just in

24:29

coming to terms

24:31

with Yep . I

24:34

gotta go ahead and take this step and

24:37

I want to tell the world about

24:39

it .

24:41

Yeah , two things . First of all , I

24:44

I consider it moving forward

24:46

. When a

24:49

loved one dies , I consider that

24:51

you move forward . You don't move on because you

24:53

got that with you , so you're

24:55

moving forward . And and

24:58

the second thing is , when

25:02

you're in an Alzheimer's journey

25:05

with a loved one , you

25:07

grieve every day Because

25:09

you see your loved one losing more

25:12

and more of themselves to

25:15

this disease and you're

25:18

often not recognizing

25:20

your loved one , so

25:22

you're grieving through the journey

25:25

. And Then , when the

25:27

journey transitions

25:29

when , when Don passed , covid

25:33

hit Don passed

25:36

in May of 2019 . Covid

25:39

was right there with us in March of 2020

25:42

. I Was

25:44

right in the midst of post

25:47

transition grief . I Couldn't

25:51

hug anybody , I

25:53

had to wear mask , I

25:55

couldn't have my children around me , I Couldn't

25:59

go anywhere . That

26:02

was tough . That

26:04

was very tough . On the one

26:06

hand , I feel like I was

26:08

blessed that Don passed

26:10

in May of 2019

26:12

, because to have had him

26:15

With me here

26:17

on earth through

26:19

Covid , that would have

26:21

been a whole new journey

26:23

. Because , as

26:25

you know , long-term facilities

26:28

shut down . Love

26:30

ones weren't allowed to go see their loved loved

26:32

ones . You know , they

26:34

had windows and partitions in front of them . They

26:37

had to wear mask . And when you're in a in

26:39

a dementia kind of state that

26:41

all hinders everything Because

26:44

your loved one can't see you . So

26:46

I feel like I was blessed that he passed

26:49

before Covid hit . But

26:52

then I was left to deal

26:54

with my grief by myself

26:56

and that was tough . I would hug

26:58

myself at Night

27:00

. I'm a yoga Practitioner

27:02

. I have been for years and I would do

27:05

some of the yoga poses . I think I described

27:07

them in here , and one of them is

27:09

to Put your right arm over

27:11

your left shoulder , left arm over your right and

27:13

hug yourself . That's a hug

27:15

. I talk about that when I do my sessions

27:18

. That's a hug , and those were the only

27:20

hugs that I could get and

27:22

they felt so good . They brought me to tears

27:24

. They still bring

27:27

tears .

27:28

Um hold on you this way . You

27:30

can't go past self-hugging

27:33

so quickly on

27:35

the parenting up podcast . I mean you can't just

27:37

fly by that . I mean that is so

27:40

powerful that , Okay

27:43

, let me . Let me back up a little bit . Where did you grow up

27:46

? I ?

27:48

grew up in in the , in

27:50

Western Pennsylvania and

27:52

in West Virginia , northern West Virginia . In

27:54

Northern West Virginia , the state

27:56

of West Virginia is shaped like a frying

27:58

pan , and the handle of the frying pan

28:00

Sets between Ohio and

28:03

Pennsylvania , and so Pittsburgh

28:05

was 30 miles east of

28:07

us , so I could be in three states

28:09

within . That's Okay .

28:11

That's where I grew up well

28:13

, let me just say that it

28:15

being a practitioner

28:18

of yoga for years

28:20

, growing up

28:22

in Any

28:24

part of West Virginia or

28:27

any part of Western Pennsylvania , and

28:29

then finding yourself in any part

28:32

of Georgia , a Woman

28:35

of color , and practicing yoga enough

28:37

to then lean on it during

28:40

the pandemic and having the

28:42

comfort to hug yourself

28:44

into a state

28:47

of comfort that

28:49

brings about tears is

28:52

there , I say , miraculous and

28:54

heaven sent , and A

28:58

preparation of a spirituality

29:00

that not only did you need

29:03

, but I believe that will be very

29:05

useful To many others that

29:07

here and view this

29:10

podcast episode because

29:12

, as simple as it sounds , the

29:15

magnitude of the power because

29:17

we will always

29:19

be with ourselves and , yes

29:22

, the more we learn how to care

29:25

for ourselves , but

29:28

better that's . The only . The

29:30

only person you're guaranteed to be with every

29:32

day for the rest of your life is you , and

29:35

so , when

29:37

you can have those type of tools

29:39

, yeah , yes , go ahead .

29:41

I might add that the yoga studios

29:44

and the gyms they were all closed to during

29:47

COVID , and so I took two

29:49

online sessions and I

29:52

practiced yoga just about every day , and

29:55

so the online sessions were helpful

29:57

to me , just knowing

29:59

that there were other people out there in the class

30:02

and that the instructor was Sensing

30:05

what we needed and gave it to us , and

30:07

so I mean , it was a very it could have

30:09

been a very isolating

30:11

time , but I reached

30:13

out by way of the virtual

30:16

Environment and that was

30:18

very helpful to me . I still

30:20

I go , actually go to the yoga

30:22

classes these days , these days , but

30:24

I still do that hug Because

30:28

I'm trying to magnificent trying

30:30

, I think , that hug still Magnificent

30:34

.

30:36

A few times you have made the distinction

30:38

between caregiver and care

30:40

partner and

30:42

. I would like you to Going

30:47

to a bit more detail , for

30:49

those who may not understand

30:52

.

30:53

Okay , okay , okay . I think there's

30:55

a definite distinction between a care

30:57

partner and a caregiver . The care

30:59

partner Part of it comes

31:01

early in the disease , probably

31:03

before the disease is diagnosed

31:05

, and into some of the early stages

31:08

of the disease , when you and

31:10

your loved one can have these conversations

31:13

about what's

31:15

going to happen going forward and

31:18

what are some of the options . Going forward

31:20

, and my husband

31:22

had , I believe he knew that he

31:24

had Alzheimer's , he had dementia , I

31:26

believe , before he was diagnosed

31:28

, because after the diagnosis

31:30

he would give me

31:33

all of these articles

31:35

from John Hopkins , no

31:40

papers , white papers

31:42

from , you

31:44

know , the the major hospitals

31:47

, minnesota

31:49

, the Mayo Clinic . He would . He

31:51

gave me all of that when we

31:53

got the diagnosis and

31:56

he felt assured that

31:58

I was not going to leave him , that

32:00

we were going to go through this together . He

32:02

gave me all of the resources

32:05

that he had gathered up and they were

32:07

quite a few . So that's

32:09

why I believe he knew that

32:12

this is , this was coming . And and

32:15

when I said to him when we had

32:17

that Boba , boba , boba day , we

32:20

need to find out from the doctor what

32:22

this is all about and if you don't mind

32:24

, I'll go with you , yes

32:27

, and he didn't give me any flak about

32:29

that , and that's kind of when we started

32:31

With this diagnosis , and

32:33

so that part of

32:35

the journey was absolutely care partnering

32:37

. But when Don started losing his cognitive

32:40

abilities , when he needed

32:42

a partner to go through the clinical

32:44

trials , to do the paperwork

32:47

, to answer the questions , when we saw the

32:49

psychiatrist , the social worker , whoever

32:52

we were visiting , then I became

32:54

his caregiver , because one of the first things

32:56

that happened to my husband was

32:59

he lost his ability to speak . That's

33:02

what that ? He

33:04

lost his ability to

33:06

speak , and so one of the first

33:08

members of our medical

33:10

team was a

33:12

speech therapist , and

33:15

she is the one that

33:17

made it clear to me that

33:20

my husband Was having

33:22

a processing issue . It

33:24

was not a memory issue , and

33:28

I thank her well to this day . Yeah

33:31

, well thank you . So

33:33

you know , and from that point on I was a caregiver

33:35

, I Got you

33:37

.

33:39

Wow , this has been

33:42

such a powerful

33:44

conversation with you , eunice

33:46

it you have such a

33:48

dynamic viewpoint

33:50

of how to you

33:53

and on had such

33:56

a dynamic way of managing

33:59

a tough diagnosis

34:01

, managing it with grace

34:03

and and community . It's

34:07

a pleasure From my

34:09

perspective to have met you , to

34:11

have been exposed to your book , to

34:14

know your husband through you . I

34:17

am grateful that the parenting

34:19

up community now knows

34:21

about you , about him . Before

34:26

we wrap it up , is

34:28

there maybe

34:30

One

34:33

moment or one story or one incident

34:35

that you remember that kind

34:37

of makes you chuckle or Did

34:40

you consider humorous that

34:42

occurred after his diagnosis

34:44

?

34:46

Yeah , I have a couple of them . One

34:50

of the things that I Did

34:54

as his caregiver I went to all

34:56

of his medical appointments with him . He

35:00

my husband was a veteran , so he had

35:03

access to the VA services

35:05

. We use the

35:07

services of the Alzheimer's Association

35:10

. We use the services of art . We

35:12

reached out . When you get this kind of diagnosis

35:15

, in my opinion , you need to learn

35:17

all you can about the disease and

35:19

you need to reach out to your support services and

35:23

to tell you the truth . When I learned about this

35:25

disease , I couldn't even spell dementia

35:27

. I Couldn't spell

35:29

it , I didn't know what it was .

35:34

But I have to Use

35:37

. I have to tell you I was trying the way I spelled

35:39

Alzheimer's honey , they would have put me back in first

35:41

grade and dementia I was putting C's

35:43

and H's in it .

35:46

Well , that takes me to my little , my little story that

35:49

I want to share . We were in

35:51

in a conversation With

35:53

with one of his medical Practitioners

35:56

, and she was asking him you know

35:58

, the depression is very much a part of this disease

36:00

, both in your loved one and

36:03

in you , the caregiver and so she was

36:05

asking Donna series of questions to try

36:07

to determine if he was depressed . And

36:10

so when she was asking him and he was

36:12

, he was reciting his , his responses

36:15

. I was kind of doing

36:17

down my responses too . And

36:19

so she said to him

36:21

she said Well

36:23

, it looks like , you know , there

36:26

there might be some depression

36:29

going on here . And he said

36:31

yeah , she's got some

36:33

too . He was pointing to me . He

36:37

said yeah , I believe she's got some too . I said I

36:39

do , we both need some help . But

36:43

my husband sent a humor , you know , while it was

36:45

there . It was there , you know . He said

36:47

to me at one time he did not want

36:50

a woman caregiver , and

36:53

when we put him into assisted

36:55

living , he

36:59

had numerous caregivers but his preference

37:01

was to have a male caregiver . And

37:03

so One of the things that

37:05

happened that they the staff shared

37:08

this with me and I cracked up . They said I'm

37:10

miss so-and-so

37:12

went in this morning at six o'clock to

37:15

give your husband a

37:17

bath and he swung

37:19

at her and

37:21

I had to hold . I had to hold the laughter

37:23

back and I said , because I had already told

37:25

them what kind of caregiver he wanted . And

37:27

and so I said , did he hurt her ? He

37:29

said no , she ducked . I said

37:32

well , good for her , she had no business

37:34

going in there to get him up at six o'clock first

37:36

of all in the morning , but what's taking sure , six

37:38

o'clock in the morning ?

37:40

Nobody and listen , he wasn't

37:42

going to work . I try to tell the

37:44

caregivers with my mom all the time they

37:46

want to put her on a good schedule . A good

37:49

schedule for horn . Yes , we go

37:51

.

37:52

They want to put on their schedule . That's right

37:54

. That's right and that's what

37:56

this caregiver was this paid caregiver was doing . She

37:58

was wanting to give him his shower so she

38:00

can get to the others . Well , you know , nobody

38:03

wants them to be touched like that any kind of

38:05

way . I don't want to touch any kind of way at six o'clock anymore . I

38:07

want to roll over . And when

38:09

she talked it out of the lab I said well

38:11

, that's what y'all get . I told

38:13

you he wanted a male caregiver and

38:15

you don't give him a shower on your schedule

38:17

. If he wants to take a shower at two o'clock

38:19

in the afternoon , that's when you need to give him his shower . That

38:23

was a funny moment that I chuckled about .

38:26

I love you .

38:27

Apologize , but he did

38:29

swing out .

38:31

Well , that you know what . That's their fault . That's

38:34

their fault . That's their fault . He

38:36

said look , he said what he

38:38

said you

38:41

can talk without words and Don did

38:43

. Don talked without words and

38:45

I love it . I love it Well

38:47

. Thank you so much , eunice . This has been

38:49

such a wonderful conversation . Let

38:52

the parenting up community know where

38:54

they can get your book and

38:57

how they can stay in touch with you .

38:59

Okay , so for now my website is down for

39:02

repairs , but you can buy the book out

39:04

on Amazon at

39:07

Barnes and Nobles . You

39:10

can order it from me and save shipping

39:12

and handling those of you that are in

39:15

the Atlanta market . If you can

39:17

just reach out to me by way of my

39:19

email address or

39:22

Facebook I'm on Facebook I

39:25

can get you a book and save you some

39:28

shipping and handling costs . The

39:30

book comes in a hardback . This is the hardback

39:32

version . It also comes in

39:35

a paperback version and

39:38

I enjoyed writing

39:40

it and I feel Don's spirit

39:42

every time I talk about it

39:44

. Thank you

39:46

so much . I

39:50

hope the book is better comfort for you

39:52

as well .

39:53

It has , it really has . It's

39:56

comforting . Whenever I

40:00

share the

40:02

spirit of caregiving with another

40:04

, the

40:08

tagline of the parenting up community is Alzheimer's

40:12

is heavy , but we ain't gotta be . And

40:14

whenever I lock spirits with

40:16

another caregiver , it's uplifting

40:18

. And so your book did just that

40:21

, and this conversation has

40:23

reinforced

40:26

it that much more . So

40:29

thank you so much .

40:30

Good Thank you . Thank you , that's

40:32

my hope . If

40:34

somebody has helped , I'm pleased , and thank you for

40:36

having me Hope to see you again soon .

40:38

Well , you should be pleased sweetheart , let's

40:41

snuggle up . Number

40:46

one care partner and

40:48

caregiver it's not the same

40:50

y'all . Care partner

40:52

is when your LL still

40:55

has enough cognitive

40:57

function and ability

40:59

to help , you think , to

41:03

be involved with planning

41:05

his or her life . They

41:08

can help . But caregiver

41:10

is what the hell I'm doing with Eddie ? She

41:13

ain't helping me at all . She loves

41:15

me a lot in her spirit

41:17

, but that's the difference . So keep

41:19

that in mind . Care partner is

41:21

in the beginning maybe really

41:23

really mild , but

41:26

they are not a caregiver , all

41:29

right . Number

41:32

two make

41:34

intentional memories

41:36

with your LL . I

41:40

know it can be sad , it can

41:42

be scary , it can

41:44

just be pissed off that

41:46

this disease , whatever

41:48

the disease is in my case it's Alzheimer's

41:50

, it might be cancer , maybe

41:54

it's FTD , but

41:57

Eunice and Don made

41:59

such specific memories

42:02

they chose

42:04

to look Alzheimer's

42:06

right in the face and

42:08

say you know what , middle finger up . I'm

42:11

not going to put the middle finger up , but middle finger up

42:13

. We still going dancing , we

42:15

going to the jazz club , we going to play golf

42:18

, as long as we can . And

42:21

so now she has pictures , she has video

42:23

, she still has social media

42:25

posts that pop up and

42:28

remind her of those times where

42:30

they battled and they fought and

42:33

that can help . That'll help you down

42:35

the road . It'll help you later . It

42:37

will help your loved

42:39

ones , after you

42:42

aren't here as a caregiver , to

42:44

know that battling and fighting

42:46

is what we do in

42:48

our lineage . We'll give

42:50

up Hell

42:52

no

42:55

, just your LO

42:57

to be frustrated and

42:59

mad sometimes . Eunice

43:03

said that there were times when Don

43:06

said what the F is

43:08

happening to me ? Who am I ? What

43:10

is this going on ? Can

43:14

you imagine how many times he might

43:16

have been thinking and feeling that

43:18

, but he just didn't say it

43:20

and

43:24

we can tell that our LO is a little

43:26

off or a little shaky . Wow

43:29

, what might they be feeling

43:32

on the inside ? Give

43:34

them grace , give them a pass , like

43:37

pretty much every day , all the time

43:40

. Just give them grace and give them a pass , because

43:42

they are fighting literally

43:45

every moment , every second

43:47

, trying to

43:49

understand why is this happening

43:51

. How can I communicate what I'm

43:53

thinking , what I'm feeling ? It

43:56

sucks . It sucks way

43:58

more to be them than to be their

44:00

caregiver or care partner . You

44:03

know what I'm saying . What's

44:06

up ? Family ? Share this episode right

44:08

here with a caregiver you love . Review

44:10

on Apple Podcasts . Follow

44:13

us on social media and please

44:15

subscribe to our YouTube

44:17

channel .