Caregiver Insights with Drs. Jacobs and Mayer

Episode Transcript
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Speaker 1 (00:00):
Hello, everyone, this is Betsy Worth only you're a host
of Chatting with Betsy. I'm Pat o'roll Talk Radio Network,
a subsidiary of Global Media Network LLC. I we're a
montross to educate, and lay and entertain. The views of
the guests may not represent both the hosts of the station.
Folks where you are and the world listening to the show.

(00:24):
I want to thank you for listening. You're not going
to You're not gonna want to miss my true special guests,
Our true special guests today their husband and wife. And
I'm going to tell you about my guests. But before
I tell you about my guests, I just want to
tell you I do this show because I want people

(00:44):
to know about resources. I want people to know about
people who can help them. And my two guests are
wonderful resources. And I have to say before I forget.
They both wrote co wrote this warder full book, The
ARP Caregiver Answer Book by Barry J. Jacobs and doctor

(01:08):
Julia L. Mayer. Folks, I'm going to tell you right now,
I wish this book was available twenty five years ago.
I wish this book was available fifteen years ago. If
you are a caregiver, if you know a caregiver, and
even if you're not, you will probably eventually be a caregiver.

(01:29):
That's a given. You need to buy this book. I'm
telling you that right now. Go buy this book by two,
buy one for yourself, and give one as a gift
to someone that you know, because this book is truly
a gift. And now I'm going to tell you about
My guest with me today is doctor Barry J. Jacobs,

(01:50):
who is a clinical psychologist, family therapist, and a principle
for Health Management Associates, a national healthcare consulting firm. Doctor
Mary Jacobs is a former magazine journalist. He is the
author and co author of several books. He wrote The
Emotional Survival Guy for Caregivers, looking after Yourself and your

(02:13):
family while helping an aging parent and doctor may Or
doctor Jacobs both co wrote AAARP Love and Meaning after Fifty,
the Ten Challenges to great relationships and how to overcome them,
which sounds very interesting, and they also co wrote AAART

(02:37):
Meditations for Caregivers, Practical emotional and Spiritual Support for you
and your family, and the newest book that I just mentioned,
the aa ARP Caregiver Answer Book, which this book is
in question and answer form and I can't help but
read about it. It's excellent. And doctor Julia Mayer also

(03:05):
wrote a book called A Fleeting State of Mind. And
doctor Julia Mayer is a clinical psychologist and private practice
in Media, Pennsylvania who has specialized for three decades in
helping women and caregiver roles as well as those with
troubled marriages and histories a sexual trauma. Both doctor Mary

(03:30):
Jacobs and Julia Mayer, we're both caregivers. They know what
it's like. And I've said this to my show before
and I'm going to say it again. If I'm looking
to read a book, if I'm looking for advice, I
want someone who's been there. I want someone who's walked
the walk, and they really truly understand. And I'm just

(03:55):
so excited to have with me today doctor Barry Jacob
and doctor Julia el Mayer. Welcome to Channing with Betty.

Speaker 2 (04:06):
Oh, thank you so much, Betty, and thank you so
much for your a fusion praise for a book.

Speaker 3 (04:11):
Thank you.

Speaker 2 (04:12):
Maybe you can tell people about not write but three copies,
you know, so we're very happy with with your endorsements.

Speaker 1 (04:21):
Oh yeah, Oh, you are welcome and I forgot to
mention it, and I'll mention it now. Uh that doctor
Barry Jacobs also has written for Art AARP that organization
a column. And you know it's funny because I get
that magazine. I've received that magazine for many years now,

(04:44):
and I just never noticed your name until recently, because
no I know who you are, but I have seen
your books and your articles in there. I just, you know,
didn't know about you. So I want to thank you
for contacting me and connecting with me to help promote

(05:06):
this awesome book. When I tell you I'm going to
quate doctor Barry and doctor Julia, is that okay you can, yes, Okay,
that's fine, Okay, Okay. When I looked at this book,

(05:28):
I cried, And I'm going to tell you why I cried.
I cried for tears of joy and one it brought
up a lot of emotion, but tears of joy. That
there's a book that can help people. And I really
like that you have at the end and I don't
need to be more of a folks. It's just a

(05:50):
reality of what to do after caregiving, and you addressed
that in your book because that's a huge, huge difficulty
that people have is after caregiving, who am I? But
do I do it myself? And I love how you
address that in the book, among many other topics, But

(06:16):
I want to ask you both, how did you come
up with this idea to do this book?

Speaker 2 (06:24):
So you know, we had written two previous books and caregiving,
and I mean, it's a lot to say about caregiving,
so we still have a lot more to say. We've
been working with family caregivers as psychologists. It's for thirty years,
and we are, as you mentioned, have our own care
giving experiences. And then you know, once once people think

(06:45):
of you as a caregiving expert, and they you know,
friends and family members and neighbors and colleagues would would
ask us questions all the time, and we found that
the same questions came up again and again and again,
and it was always a frustrating justice. We don't know,
there's a universe of information out there about caregiving, but
when people, particularly at the beginning, find themselves in the

(07:08):
position of caring for a family member, whether it be
an aging parent or disabled spouse, they are they're kind
of lost at the beginning. So we wanted to provide
them with answers to those questions that we're pretty sure
that many caregivers have, and the book has nearly one
hundred and fifty questions on a whole range of caregiving topics,

(07:28):
not just you know, psychological topics like self care and
family dynamics, but also very pragmatic topics like finances, dealing
with insurance companies, partnering with physicians, and as you point out,
also making the adjustment to the post caregiving life after
as the person you're caring for his diet. So this

(07:48):
is really kind of a culmination of decades of work
that we've done.

Speaker 3 (07:51):
Yeah, we wanted to cover every six I don't think
we probably did that, but we wanted to get so
close to it so that any question, especially a new
caregiver has, they can look in the chapter about that
topic and they can find someone's actual question about that
and get our answers and also our resources and ideas

(08:12):
about other places to look, you know everything. We just
wanted to be like a roadmaps for caregivers.

Speaker 1 (08:21):
This is excellent. You know. Actually, the next time I
go to my neurologist, I'm going to tell them about
this book. This should be an every doctor's primary doctor
and neurologist office really in my opinion, because when you
get the diagnosis you have Alzheimer's or you have Parkinson's

(08:43):
or whatever illness you have, your mind goes blank. First
of all, you know, you're like in a state of shock,
and then for the most part, unless things have changed,
you're on your own. People don't know what to do,
they don't know where to go, and they need guidance.
And I really feel that your book is guidance. I

(09:11):
really feel very strongly about that, which is why I
was someone neurologist. He needs to about this book. I
don't want to give it to him. I want it.
Excuse me, I want to keep this book. But I
just you know, you're lost, right, and you look for support.

(09:34):
I know that when my mother in law when she
was diagnosed, that was in two thousand, there wasn't any information,
there was no guidance. My husband was diagnosed twenty ten,
again there wasn't much information about early on said old timer's.
There was no guidance at all, and you flounder. In

(09:58):
my opinion, you're book as a lifeline. It's like stone
throwing a life preserver out to someone who's drowning in
the waters of caregiving and not knowing what to do.
That's how I'm strowing. I feel about your book.

Speaker 2 (10:14):
Well, and thank you for saying that that's the end,
and that was the intention of really providing, as Julie says,
that roadmap for people so they can get an idea
of navigate this new territory that they're in. And it
was distressing to hear that it's so hard for folks
to find the information that's out there. You know, we

(10:34):
know that they can always go to the Alzheimer's Association
website and get information about dementia. They can always talk with,
as you point out, their neurologists, and the neurologists the
medical office will have certain information. But what happened early
on is that people are not They're just not quite
sure which information the trust that they don't and they're
kind of flooded with their own feelings and they have

(10:56):
a hard time taking in with informations available. So again,
by having a book that's on the shelf that they
can come back and refer to or hoping that they
can are gradually taking the information that they need and
really feel oriented are going forward.

Speaker 1 (11:11):
Yes, And I'm so glad in your book that you
mentioned pallative care and hospice care. I really thought that
was very important. And there's well, I think, you know what,
eventually you might have to do a book too, you
might have to do a second edition on it. And

(11:32):
I just really feel that and sometimes can't put my
thoughts and to words, but knowing that this book was
written not only by skilled, professional, experienced psychologists, but you

(11:54):
were both caregivers for your parents or step parents, and
that is important. It's to me, it's important to know
that Barry and Julia or just talking from the top
of their head, they're talking from experience. You walked this.
You know what it's like to deal with that, aging parents,

(12:17):
you know what it's like to deal with siblings that
may not be cooperative, or parents that are you know, difficult.
You know all this, and that to me, that really
is very beneficial for the for the reader to know that.

Speaker 3 (12:36):
It definitely helps inform everything that's in the book. You know,
we we have helped people for decades, so we were
helping caregivers even before we were caregivers. But it made
an enormous difference, and in particular just to understand the
emotional experience of being a caregiver and the you know,

(13:00):
the stress and the exhaustion and and the love, and
you know, the feeling of you know, I want to
do the best I can, and like you said, before,
you know, our final we talk about how to deal
after the caregiving is over, because we also experienced that
sense of shift from we were so busy caregiving that

(13:24):
we you know, had sort of stepped away from our
lives in certain ways, and we needed to be able
to get back to that. And it felt very important
to make sure that other people understand that's a very
common experience and and give them some ideas about how
to do that.

Speaker 2 (13:43):
Yeah, I mean one of the things, Yeah, we got
to go ahead back to kind of give you give
your listeners a better feel for what we went through.
I mean, we went through a nine year period where
we for took care of Julia's father, who had as
good dimension, and then after he died, within six months,
we were moving my mother and stepfather rough from Florida

(14:07):
to live near us because my stepfather had very bad
alphem dementia and my mother, who was very frail, simp
they couldn't take care of him any longer. And so
we moved them up to live in an apartment a
mile from us, and then because very involved in our
life for the next seven years. And first my you know,
my stepfather was quite affected by dementia, but unfortunately, over

(14:29):
the next few years, my mother became affected by dementia too,
So we dealt with a lot of dementia. And I
mean that is that's extraordinarily difficult to see someone you
care about really in some ways disappearing, their personality changing
in front of you, and and really just becoming more
and more dependent upon you. And so we had that experience.

(14:53):
At the same time we were raising our teenage children and
working our full time jobs. So we were standwich generation,
the stretch between caring for generation above us and generation below.
And we really it was not easy. I mean, even
though we supposedly went into this knowing coming about caregivings,
we had to really do it ourselves, and particularly for
an extended period of time. It worked out, you know,

(15:16):
by the end of the say, I mean, I was
very sad after my stepfather died and my mother died,
but I also was relieved because it had been a long,
hard course and I was ready to not be a
caregiver anymore.

Speaker 1 (15:31):
Yeah, that's quite understandable. I had to ask you this,
and this is kind of personal. How did you support
each other through your parents' step parents' journeys? And that's
really important is to have your spouse or partner support

(15:53):
because with Matt's mom, Matt's mom would tell me she's
getting like her mother because that's grandmother had old timers
shouldn't want me to tell Matt, but I had to
tell Matt and I had gotten that involved and that
didn't but he was not supportive. I was trying to
be supportive of him. But it's really bad when your

(16:16):
spouse makes you the enemy when you're not the enemy.
You're very fortunate that you both support each other. But
did you have any difficulty supporting each other at any
time during your charitiving journey? I don't.

Speaker 3 (16:33):
I don't know that we had tremendous difficulty. But don't
forget we're two psychologists. We shouldn't be able to because
if anyone can but helps, it does. I mean, but
a lot of people have tremendous grief that they don't experience,
and instead they bicker and they fight and they become enemies.

Speaker 1 (16:53):
Like you said, and.

Speaker 3 (16:54):
It's easier to be angry than sad, and it's easier
to fight than deal with the reality of somebody with
this diagnosis, with dementia who's you know, diminishing and will
ultimately die. It's hard stuff, and so unfortunately a lot
of people, rather than connecting around the grief and sharing

(17:17):
their feelings and supporting each other emotionally, it's easier to
push people away and to argue, and it's very hard
to overcome that. We've certainly both worked with couples where
that's exactly what's happened, and you know, we try to
bring them together. We try to help them understand that
they're both in pain and they're both struggling, and that

(17:39):
they could be supporting each other and it would bring
them closer during a very difficult time of caregiving one
of their parents, or it can make their relationships feel
very strained and they can feel very lonely because caregiving
can be so lonely.

Speaker 1 (17:57):
Yes, oh, yes, that's true. Definitely agree with that. I
have to tell you both a funny story. I no,
I mean, I'm sure being psych both things psychologists that
helped you deal with this situation. My son. He was
in a social skills psychology group. He's on the spectrum,

(18:20):
all to the spectrum. And one of the parents was
a psychologist or a psychiatrist, I forgot which one. And
she even worked at a specialist children hospital. And I
said to her, well, you really must be able to handle,
you know, your son's situation. And she said, don't no
bed thing. He unravels my nervous system in fifteen seconds.

(18:45):
She said, I'm depressed. I take antidepressants and I'm not
dealing with the situation, and I'm mistaken. Then, I mean,
this was many years ago. I'm thinking, well, if you
can't deal with it, was that's safe for me in
dealing with situations. But we have to realize that professional
people are also regular human beings that have difficulties sometimes

(19:14):
and dealing with problems, the difficulties in their own lives.
So I just had to share this. Yeah, that's absolutely
the case.

Speaker 2 (19:25):
I mean, we you know, we we may know how
to talk. The best thing I always say, the best
thing I got out of graduate school is meeting Julia
uh and I uh and and the But you know,
so we learned certain ideas, we learned how to talk
about feelings. We learned how to to really, I mean,
over the years, just as any styles that do, we learned.

(19:45):
We learned to get to know each other and learn
how to how to support one another. But during our
caregiving years it wasn't perfect perfect. I mean, we did
pretty well, but I mean, just to give you an
example of one of the difficulties we ran into early on,
after we had moved my stepfather and mother up from
Florida to live in an apartment a mile from us,
I sort of went overboard and spending time with them,

(20:08):
trying to be support of that. I kind of thought
that that was what I was supposed to do. And
it took Julia to kind of point out to me
that I was really doing for them at the expense
of doing for our children and being present for her,
and that, like a lot of folks in a family situation,
we have multiple family roles. We're not just an adult

(20:30):
child to our aging parents who were maybe a spouse,
we maybe a parent. We may have other family responsibilities,
and so I had to learn to balance those responsibilities better.
And so it was with curious feedback that I kind
of realized that what I was doing was a little
out of whack, and so I needed to pull back

(20:51):
a little bit and find a better balance.

Speaker 3 (20:53):
And it was out of whack because he felt guilty.

Speaker 2 (20:56):
Oh yeah, I forgot about that small.

Speaker 1 (21:00):
He's over love that, yes, and we do that guilt,
Oh my goodness. I mean, who who has a caregiver
has n't felt guilt? I've met many. I mean, I've
been doing the show for almost six years, and it
seems like I've been in several caregiver groups over the years,

(21:21):
and I run a caregiving group, and guilt is a huge,
huge problem, and especially how caregivers deal with it, and
a baron Julie. I'm a huge mental health advocate, and
I always recommend counseling for the caregiver because sometimes the caregiver,

(21:48):
you don't know that you're burnt out. You don't know
that you're snapping at people. You do not realize it.
I know I didn't. I did not realize. I worked
in a preschool and I was snapped at these because
I was working forty hours a week. I was taking
care of everything, and I thought I had to be superwoman,
you know, give me my cape, got to take it

(22:09):
on the chin, and it was getting to be too much,
and I was really on the on the verge of
a breakdown because I thought I had to be the
strong woman. And I learned, you know, you don't have
to be strong. And I did go for counseling and
it helped me tremendously. You can't do this alone, folks.

(22:31):
You just cannot do caregiving alone. You need support. And
you also mentioned that in your book.

Speaker 2 (22:39):
Yeah, no, that's you. I mean, I thank you for
endorsing counseling. It's the way of getting feedback from someone
who's a subjective and basically may say to you, you know,
you can't. There's no such thing as super human beings.
We're all just human beings and that when we take
on too much and get too stressed, we're not going

(23:00):
to be able to perform at our peak with any
one of the roles that was taken on. And we
have to be we have to really be kind to
ourselves and not It doesn't help any caregiver to beat
yourself up and hold yourself to a standard which is
not realistic. And so that's something that we've talked about
with our psychotherapy clients forever, but it's something that we

(23:22):
had to learn personally first thing. And I'll say, especially me,
I thought I thought I could be Superman. You know,
I've always thought of myself as Superman, by the way,
but I realized that I'm not just man, and I
had had to really lower my standards for myself and
not judge myself so harshly, and that enabled me to

(23:42):
not feel so guilty.

Speaker 3 (23:43):
You make an extremely important point, though, Betsy, that recognizing
when you're burning out is crucial. So you were staffing
at those kids and because you noticed, because you could
feel yourself fallen apart, you went and got support. There
are a lot of people who don't do that, and
we want everybody to do that. You know, it's so

(24:04):
important that you have to take care of yourself. You
have needs too. You know, we're not superheroes. We might
do great, great things, but there are limits. And so
recognizing when you're feeling overwhelmed, when you wake up feeling dread,
when everything is irritating, you know, those are all signs
of burnout that it's important to recognize if you're having

(24:26):
them so you can go it's something different.

Speaker 1 (24:30):
Oh, absolutely, And I know you talk about self care
in your book, which is very important. And Barry and Julia.
Because I'm a Jersey girl and my father's daughter, I'm
very blunt when I say that self care is so important.

(24:54):
It's a matter of life and death. That's really a
matter of the caregiver's qualit bit of life during caregiving
and after. It's so important that self care that sometimes
we feel, oh, you know, I won't take care of
myself because it's taking time away from my loved one.
But I always tell people, if you want to enjoy

(25:15):
life during caregiving and after, you need to take care
of yourself. You need to make that time to go
to the doctor, to just debreathe sometimes, you know, meditate,
whatever it is that brings you peace. It's so important.

Speaker 2 (25:36):
This is something that a lot of care givers, some
of know like they know it intellectually, but they have
a hard time putting it into into our practice. And
so we talk it in the book and we talk
with our owns like a Verby client about how do
we actually put these things into practice, How do we
protect time for ourselves, how to identify some some quick

(26:00):
things we can do to replenish ourselves, and that so
that we don't it doesn't have to be such a
time consuming endeavor, and that you know, we have to
really again be kind to ourselves and make sure that
we are we are giving ourselves the care we in
order to be the best caregiver we can be, which
is what all of us want to be.

Speaker 1 (26:22):
Exactly. And Barry and Julie, I've I've been saying this
for a very long time. There's no such thing as
a perfect caregiver. We're going to make mistakes. You know,
mistakes are made, we learned from them. There's so much
information out there now than ever before for caregivers. But

(26:43):
I know that I felt guilty a lot. I felt guilty,
guilty if they're me died. I felt guilty taking out
their own hospice, what he went through, And I learned
to let it go. And I think that, you know,
mental health so important. And I'm sixty seven, so back

(27:06):
in my time growing up, you didn't discuss your feelings.
You didn't discuss mental health. I'm glad that's being discussed
more now. And people think they had to have a
strong persona especially after their loved one dies. They think
they have to say the strong person and they don't.

(27:27):
And I think that it's so important for people to
acknowledge their feelings and validate them. And you know there's
going to be I know, going over all over the place.
There's going to be what I call the new normal
after your loved one dies. I had to get used
to that. I had to get used to this is

(27:47):
how I'm going to feel this time of year. There
wasn't anything wrong with me. I didn't have to be sixed.
I just had to realize this is what is new
for me to learn to recognize it, and lewis it.
But it took me a long time to do that.
And I can't recommend grief counseling, any kind of counseling enough.

(28:14):
And I want to really make it clear to the audience.
Please go for counseling if you need it. It's what
your primary care doctor, you every folds in your area.
It is not a sign of weakness. It's not it's
a sign of strength. We couldn't agree with you more.

Speaker 3 (28:36):
We feel very strongly about that, because if you deal
with your emotions, in particular, if you are willing to
k through your grief and feel the sadness, feel the anger,
feel whatever comes up, because grief is really complicated and
it isn't a sadness. It can be anger, it can
be frustration, it can be that you feel cheated that

(28:59):
the person you know you're having memories of deprivation. It
can be anything. The idea is if you can if
you can tolerate those things, if you can walk through
it and feel all the feelings, you come out the
other side actually stronger, more capable, more able to deal

(29:19):
with the challenges of life. But it's a hard journey,
you know, when people, when you lose that person that
you were taking care of, you have all kinds of grief,
and you're right. People often feel like they're supposed to
just be strong and stoic, But what we find is
if they're willing to do the work, they really improve

(29:42):
their quality of life.

Speaker 1 (29:46):
One hundred percent. I definitely. I mean, I still go
for grief counseling. That died in twenty twenty January first,
twenty twenty, and I'm still going for grief counseling. And
that's why I always, you know, talked about it on
my show because I feel that if people hear me
say that I go and I'm not ashamed of going,

(30:06):
that I hope it encourages someone else to go and
get the help that and support that they need, because
it's difficult, you know, caregiving, as you know Barry and Julia,
it's difficult after caregiving. It's a whole different situation that's difficult.
And I know that caregivers, a lot of them they

(30:29):
promise their parent or their part or their spouse, oh,
I won't place you, and then they have to place them,
and then they feel guilty about that when I always say,
don't promise, because you don't know what the future has
in store. I always told them that this is not

(30:51):
the sixth sense of humor. I'm a choice of sense
of humor. Barry and Julia help me get through caregiving.
I tell them that I promise him about placing him,
because if I feel that I thought it was better
for him, if I could no longer do it and
he needed more care, that I would place him. And

(31:11):
of course he would say he would run away. But
I did tell him. I said, somehow, some way, I'm
going to share your story to the world that I
said I could promise you, and he said he would
call me Booby. He said, Booby, don't talk about me.

Speaker 2 (31:28):
Well, it's such a wonderful thing, Betty, that you are
sharing his story and your story with the world and
making positive meaning, which sounds like a very difficult experience.
I can tell you. You know, you mentioned a number
and what you just said you mentioned a number of
things that come up commonly with caregiver. So one is
do you make that promise? And your advice is good advice.

(31:49):
Please don't make that promise. But even if you make
that promise, your job is not to kind of uphold
every promise you ever made, but it's to make sure
that you're the person you're caring for is receiving the
best care that they can and to meet their needs
at whatever state of disease there is. And you know,
I ended up placing my mother in a nursing home

(32:12):
to the end of her life as well with my stepfather,
and I not that I was happy about doing it,
and it was hard to get them into those two
nice places and to visit them there. But you know,
for my mother, she was having multiple falls. She was
hospirized three times in a year for fallen for broken bones,

(32:32):
and then had long rehab stays. My stepfather, he was
very confused. He was roaming around the apartment at night playing,
you know, playing with electrical outlets, and he had a
hold of toolbox and he would be taking apart of
the faucet, and it was we give it primarily for

(32:53):
safety because we couldn't provide the twenty four hours care
that they needed in order to make sure that they
weren't they weren't going to be harmed.

Speaker 1 (33:02):
Uh.

Speaker 2 (33:02):
And so placing someone in a nursing facility is is
very hard. It's a scruciating decision, but it's often that
is almost always the right decision. And then in terms
of you know, how people feel, how they adjust after uh,
the person they're caring for has died. You know, we've
seen many caregivers who just sort of assume they're going

(33:24):
to go back to the life the way it was
prior to becoming a caregiver, and it almost never happens
because caregiving changes us. We learn things in ourselves, We
learn these skills, The things that we used to do
may no longer just have the same meaning and purpose
for us.

Speaker 1 (33:43):
Uh.

Speaker 2 (33:44):
And we've seen many caregivers who, after their loved one
has died, they become they go on and find other
ways of providing care for other people because now now
they know how and too it's because it was so
important for them to do this work. They don't want
to stop that this this what is the kind of moral, moral, good,
moral work that they were doing for their loved one. So,

(34:07):
I mean there's a lot, there's a lot of changes
that people go through a lot of transitions throughout the
Hope care giving journey.

Speaker 1 (34:13):
Oh they're they're sure, is I'm it's it is quite
a journey. And everyone is different. I mean, I know,
for myself, I learned a lot about myself and I
think Matt every day. You know, I said your journey
changed my life and I thanked him for that when
he was dying, and I promised him I would continue,

(34:36):
uh to you know, go on with with my work.
I never thought of myself as a leader or or
an advocate, and yet I was for many years. But
just didn't you know, realize it never Barry and Julia
that I think I would be interviewing people. I'm this

(34:58):
shy person. I would if anyone would have told me
this like ten years ago, I would have said, you're crazy.
I'm not going to be interviewing people. And it really
if you are different, you're not the same, and it's
up to us to choose. I always say that, to

(35:19):
choose whether it's going to make you a better person
or a better person. You know, it's up to us.
We get to choose, and I will tell you and
I'll tell the audience. I have a whole new appreciation
for life. I really do. Even when unfortunate things happen,
I say, Okay, I have my health. I'm going to

(35:41):
get through this, and I'm grateful for every day. And
I think it's because Matt died he was sixty six.
I lost my brother a year after Matt. My brother
was sixty seven. Life is short, very short, and I'm

(36:02):
going to enjoy a life as much as i can
until I go. And I just have to make this
world a little better place while I'm still here. And
I just really have a whole new outlook on life
from going through caregiving. So I'm under I mean grateful.

Speaker 3 (36:23):
Yeah, it gives you a feeling of purpose, and you
certainly have that, and you know that you've been able
to use your show as a way to continue on
with that meaningful purpose. We want caregivers to feel more confident,
more competent. They have to talk to doctors, They have

(36:44):
to learn medical stuff, they have to do all kinds
of things that they never thought they would have to do.
And maybe even some of their older friends don't understand
what they're living through or they're scared of the dementa diagnosis,
so they back away, and caregivers have to get through
that too, And sometimes when it's all over and done with,

(37:06):
they have different friends or different goals in life, and
different ways of looking at the world, sort of like
you're describing. And as painful as it is to lose somebody,
at least I think the way that we see it
is there's growth in the entire experience, and if you're
open to that, you know there's some there's some beauty

(37:28):
to that as well as pain.

Speaker 1 (37:32):
Yes, there definitely is. In your book, I'm looking at
the chapters, or maybe here's an idea for another book.
I'll give you a job. How about how do you

(37:52):
How does parents deal with their children when it comes
to caregiving, because sometimes we forget that, you know, their kids,
they're young. We have a hard time. They have a
hard time, and really, my heart goes out to people
who have young children when their spouses get diagnosed at

(38:14):
a young age. I feel that we can't teach our
children valuable life lessons from caregiving, but we also have
to let them communicate with us and let them tell
us how we feel without them being fearful of judgment.

(38:37):
And I'm glad I had that open communication with my
son that he could tell me, you know, I don't
like this, it makes me sad, and we could talk
about it.

Speaker 2 (38:48):
I'm glad to have that communication. But you know what
are the barriers to communication. Well, the main one is
people maybe be afraid that if they put their own
feelings in the words, that they'll upset the other person
or make that other person more obsessed. So sometimes it's
what's called a conspiracy of silence and families where you know,

(39:10):
nobody wants to say anything for fear of upsetting others.
At the same time, people don't like to put some
of their feelings into words. Is it makes them more
real for them, And so when people aren't really discussing
the situation at hand, I do think it makes them
more difficult, makes it more difficult for people to come
together as a family in commiseration with one another, makes

(39:31):
it more difficult to make decisions another care getting story
for me is when I was fourteen, my dad I
grew up in Queen's my dad was diagnosed with brain cancer.
And then, you know, in those days, and I'm also
sixty seven, so i'm you know, I'm right there with you, Bessy.

(39:51):
When I was fourteen, so we're talking about nineteen seventy two,
people didn't mention cancer right. People refer to it as
a big right. And so nobody in my family talked
about my dad's cancer. Nobody talked about how it was
affecting him. No one talked about how it was affecting
each of us. No one talked about what was going
to happen. It was just silence. And I can tell

(40:14):
you it was a fourteen letter fifteen yar about when
my dad died. It made it made that lost much
more difficult. And then afterwards, nobody talked about my dad's
death all that much. And so I mean, again, those
were that were those are those old times years ago.
I think things are better now. People are more accepting
of feelings and more accepting of counseling, more accepting of

(40:37):
taking taking charge of their own mental health, mental wellness.
But you know, there's still many families that we encounter
that they don't want to put into words of what
they're going through because it's it's so painful for them.

Speaker 1 (40:51):
Yes, I had Josh, who has a concents of disability,
you know, tell me about how he felt. And I
encouraged him, you know, to go out weekly with his
friends because they need that. I said, soone this haves
and needs to have fun and that well be you

(41:14):
and you know, and even now my chick in with him.
Father's Day is very difficult. Around the time that you know,
Matt died as very difficult. And Josh was a great caregiver.
He was so proud of being a caregiver for his
dad and he even had a couple of shirts about,

(41:37):
you know that being proud of being a caregiver. And
I think that, you know, it's just really difficult sometimes
for children to say how they feel because they're afraid
of upsetting their parents. And I'm not a psychologist. I'm
just going to say from personal experience, and I think
that if we cut that communication off, we don't want

(42:01):
to have our children getting advice from people that they
will not get a good advice from. It's better to
you know, if we can't help them and take them
to a professional if they're willing to go. Who can't
help them? And I can't you know, stress that enough.
Check in with your kids and they can learn to

(42:22):
be very compassionate people with caregiving. That it could really
who knows, they could have a career in one of
the medical fields, you know, helping people from being a
caregiver at a young age. But I just think that
that's so important. When my brother died, my mother, I

(42:49):
think was ninety one at the time, very much with it,
but she would not talk about grieving. And I had suggested,
you know, grief counseling, and she was like, you know,
she's from that generation. I don't talk about my feelings.
I don't air my dirty laun dream and she just wouldn't.

(43:12):
And I thought, sow bad, Barry and Julia for her,
because I know she was suffering inside, and yet she
would not talk to anybody about how she felt because
she felt that she had to keep it to herself.
And I felt bad for her.

Speaker 3 (43:27):
It's sad because when you do share, it's an opportunity
to feel closer, you know. I'm so glad to hear
that you and your son could talk about his feelings
and he felt comfortable telling you because that's closeness. That's
how we have emotional intimacy. And when people feel like
they can't share their feelings, they suffer alone. They feel alone,

(43:50):
and they miss out on an opportunity to feel more connected,
more supported, understood.

Speaker 1 (43:56):
You know, it's just it is sad, yes, And I
know you mentioned about support groups in your book and
how important it is to belong to support groups. And
I can't stress that enough. Whether it's someone can't go
in person, there's a lot of support groups online. Twenty fourteen,

(44:19):
I went on Facebook and I went crazy joining support groups.
I couldn't get enough I couldn't get enough information. I
was alone for fourteen years. I wanted support, I wanted
I was like, Wow, therese other people who feel the
same way. And at that time in twenty fourteen, people

(44:40):
were not forthcoming and saying that their loved one had
Alzheimer's or whatever. Dimisha, they weren't forthcoming and their sharing
their experience is out in the open, so they did
it in private groups. And I've been encouraging caregivers to
share their stories for years and I'm glad finally now

(45:01):
people are sharing you stay at all over social media,
and I'm glad that the AARP is also letting people
share their stories. I mean, it's great that it's come
finally coming along where people are sharing and people won't
feel as alone as they did before.

Speaker 2 (45:22):
Yeah, I'm glad you Facebook groups. I mean, there are
many very actives of caregiver Facebook groups that some of
them focus on specific diseases like Alzheimer's disease. Some of
them are just more general. And you mentioned the ARP
of Facebook group of caregivers. I think the ARP Facebook

(45:43):
group has someone like twenty two thousand members, and there
are other very large ones and if you just scroll
through them, people really pour their hearts out about what
they're experiencing, what kind of support they need, and the
the other participants just provide such such good advice but
also such wonderful emotional support. So, if you're not the

(46:06):
kind of person that wants to sit in a in
a room with with a bunch of other people because
it's just not comfortable for you, certainly going online and
really taking advantage of all the resources out there on
Facebook and on TikTok and other other channels is a
great idea. So you know, support comes in many forms.

(46:28):
The support group is one. Having a wonderful spouse like
Julia is another. Just having a good close friend who
you really can trust, who can who can be a
confidant for you to talk about whatever you need to
talk about, and that that's extremely important. And then, as
you pointed out a number of times, Betsy, having the
courage to you know, to seek counseling, not not because

(46:51):
you you know, you necessarily are depressed or anxious, but
because you really just need somebody to be a sounding board,
someone to be a listener, an empathetic listener for you
to help you really get some perspective on what you're
going through and so that again you don't feel so alone.
Those are are all great ideas for support.

Speaker 1 (47:13):
Absolutely well. I want to thank you both doctor Barry
Jacobs and doctor Julia Mayor for writing this awesome book
and coming on my show spending time with me. I
so enjoyed it chointing with you. Where can people purchase

(47:34):
this book?

Speaker 2 (47:36):
So, The AARP Caregiver answer Book is available in all
the usual book outlets, so certainly Amazon and Barnes and
Noble websites where we like bookshop dot org because it
represents a lot of independent booksellers, and you know that
it's it's also available through the AARP website and the

(47:57):
publisher's website, the publishers Guildford Press, so it's pretty readily available,
and you know it's again we want it to be
We don't believe that all help is helpful. We want
this book to be helpful. We wanted to provide the
answers that the folks need in order to really get
the lay of the land here and then do as
good a job as possible, and so that they don't

(48:18):
burn out, so that they really feel like they can
negotiate all the many changes of caregiving and uh and
be able to thrive in the role. And rather than
really thinking the rule.

Speaker 1 (48:33):
They give you any clothing words such a Julia Mayer.

Speaker 3 (48:37):
Well, my hope is and part of the reason I
helped write this book is that I want caregivers not
to blame themselves and feel guilty and rate themselves for
what they didn't do, but to feel like they did
a really hard thing and they did it as well
as they could, and they should feel proud of themselves

(48:59):
and come away while they're still doing it every day,
patting themselves on the back, and certainly once the caregiving ends,
to feel like they can feel good about what they
did and that the mission that they were on and
that they accomplished something impressive.

Speaker 1 (49:19):
Oh that's beautiful. That's not to make me cheer up, Julia,
that is just beautiful. And how can people contact you both?

Speaker 2 (49:33):
We have a website at www dot Caregiver answer Book
dot com has lost their information not just about our
new book, the AARP Caregiver answer Book, but our previous books,
and there's you know, there's a way through that through
there's a portal on that website where you can send
emails to us, and we'd be happy to to interact

(49:57):
with you. We'd love to hear your stories and here
your questions too.

Speaker 1 (50:03):
Oh, thank you. This is just fantastic and I'm honored
to have talking to you both today. Thank you again
for joining me. Folks, you heard the fabulous doctor Mary J.
Jacobs and doctor Julia L. Mayor. They are authors of

(50:28):
the aa ARP Caregiver answer Book. I can't say it enough.
Run and get this book. Run to your computer, tablet, smartphone,
phone and bookstore and buy this phenomenal book. It is
a book that I'm telling you will make a great
gift any time of year. People are getting diagnosed daily

(50:53):
with some kind of dementia and now Parkinson's is on
the rise. This book is so helpful and I really
do wish that a book like this was available for me.
And that's why I do the show, and that's why
I like having people on who are great resources, because

(51:15):
I want you all to know about resources that I
wish that were available to me, or that I knew
about in my youth when there wasn't many resources available.
And all the information about today's show will be in
the blog, so please read the blog that Jeannie White,
who's the station manager, writes and produces the show. And

(51:35):
I want to thank Leland Coldwell, who CEO a Pasha
Worlds Talk Radio Network, who makes us all possible. And
I want to thank you all for listening, subscribing, please
share the show. I want to help as many people
as possible, and they need to hear what Barry and
Julia have said today. They need to know about this

(51:55):
book and thank you for listening. Chatting with That is
free to subscribe to on Spotify, Sprinker, and Amazon. You
can program Alexa. If you have Alexa to Chiney with Betsy,
and you can find me on Facebook Betsy E. Worzel
w or Z E L. And that's if we're today.

(52:16):
As I always say at the end of my show,
in a world do you could be anything, Please be
kind and shine your life rate because we need it
now more than ever before. This is Betsy Worzel. You're
a host of Chinning with Betsy on Pastor World Talk
Radio Network, a subsidiary of Global Media Network LLC. Bye

(52:37):
bye now

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