November 12, 2025 • 48 mins
For six years Lyla Yastion served as the sole caregiver to her husband of 54 years. She kept diaries and researched the science of Alzheimer’s to help her understand how the brain works and how the disease progresses. She shares her findings and her own journey through love, loss and resilience in her book, “My Years As An Alzheimer’s Caregiver- Transcending Loss by Nurturing Spirit.” Her book is an essential guide filled with personal experience and practical wisdom for Alzheimer's caregivers.
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Fearless Fabulous You is broadcast live Wednesdays at 12 Noon ET on W4WN Radio - Women 4 Women Network (www.w4wn.com) part of Talk 4 Radio (www.talk4radio.com) on the Talk 4 Media Network (www.talk4media.com).
Fearless Fabulous You Podcast is also available on Talk 4 Media (www.talk4media.com), Talk 4 Podcasting (www.talk4podcasting.com), iHeartRadio, Amazon Music, Pandora, Spotify, Audible, and over 100 other podcast outlets.
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Speaker 1 (00:00):
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(00:20):
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Speaker 2 (00:21):
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Speaker 3 (00:41):
Hello, and welcome to Fearless Fabulous You. I am your host,
Melanie Young, and thank you for joining me on the
Women Women Network. You're watching live is November twelfth, twenty
twenty five, and I am addressing a topic that is
so important and has acted so many of my friends,
(01:02):
my loved ones, and including my husband and I, David.
November is Alzheimer's Awareness Month. Of course, I believe that
awareness and all health and wellness topics are at three
sixty five year round consciousness effort, but November is Alzheimer's
Awareness Month, and more than six point two million Americans
(01:24):
are living with Alzheimer's and many people are caring for
loved ones with Alzheimer's. In fact, last night, a very
good friend of mine came over to visit and she
is currently caring for her seventy eight year old mother
who has Alzheimer's. My husband David just recently lost his
mother who had Alzheimer's. And I could go on and
(01:45):
on about friends now who are in the caregiver role,
which is I've been that person as well. It's not
easy to go from family member, whether it's a spouse,
a daughter, or you know, a sibling, to caregiver. So
today's show is going to address the topic of caring
(02:07):
for a loved one with Alzheimer's. And my guest is
someone that I know personally because she used to be
my neighbor in the Hudson Valley when David and I
lived in Gardner, New York. And her name is Lilah Yastun,
and she and her husband Edward were our next door neighbors,
and we spent a number of wonderful evenings just sitting
(02:28):
out having drinks and talking about life and the environment
and politics and current affairs and really great memories. Lilah
is shares a very open and honest account of the
six years where she served as the sole caregiver to
(02:48):
her husband Ed when he was diagnosed with Alzheimer's. The
diagnosis came while we were still living in New York.
It was in the early time. We have since moved sadly.
Ed passed I think two years ago, and Lilah has
written this very open, honest and informative book that I
(03:12):
think would help anyone who is caring for a love
withe with Alzheimer's. It's called Let's Show It on the Screen.
My Years as an Alzheimer's Caregiver Transcending Loss by Nurturing Spirit.
It is a new release. It includes her detailed journal
entries as well as a lot of research that Lila
(03:32):
did about how the brain functions. Lila has a PhD.
She is a teacher, and she and Ed actually came
together through their love of philosophy, and we're going to
share their love story and we're in then we're going
to share how Lilah helped Ad and cared for him
to the end of his life. And hopefully from this
(03:53):
you'll have some takeaways if you are currently caring for
a loved one with Alzheimer's. So Lyla Aston welcome to
Fearless Fabulous you thank you, thank you, Melanie.
Speaker 4 (04:03):
It's good to see you.
Speaker 3 (04:05):
Well. I have to say your book hit a lot
of nerves. I had to read it in pieces because
even though my late mother did not have Alzheimer's, the
caregiver part was it hit a lot. It hit a lot.
It really touched a lot of nerves. I read it
in pieces, and your honesty and openness is just remarkable.
(04:26):
So thank you for sharing that. Before we get into
what you went through over that six years, would love
for you to talk about Ed and how you met,
because you had an amazing love story and you were
married for fifty four years.
Speaker 4 (04:40):
Yes, we were. We met actually at a drama school
in New York City. We were both students at the
Herbert Berghoff Studio, and he met me. He stopped me
in a stairwell and asked to read my palm, which
of course intrigued me. He had a kind of intensity
(05:04):
about him, disarming smile, and he basically swept me off
my feet. We developed a romantic relationship, and we also
found out that we were had a common interest in philosophy, spirituality,
and even Russian literature. So that's how we met.
Speaker 3 (05:29):
Wow, you know you had a prooful career. He also,
because acting is not always an easy way to earn
a living, he had a carpentry business, right.
Speaker 4 (05:39):
Yes he did. He was a master carpenter and cabinet maker.
He remodeled all of the houses that we lived at,
including the Brownstone in New York City where we lived
for ten years.
Speaker 3 (05:53):
Oh wow, So what are some of the you know,
I know that spirituality bonded you. In the school that
you became involved with. I think it's called practical Philosophy.
What what tell us about that bond and what you
out enriched your life? Dessert.
Speaker 4 (06:11):
Well, while while we were dating and in the early
years of our marriage, we actually continued with a theater
and we founded a summer stock company in Rhode Island
and did a number of seasons of place. But we
had this deep interest in self development. So living in
(06:32):
the city, we joined the School of Practical Philosophy and
we took classes and taught classes there. The school is
eclectic in its methods. It gathers the spiritual traditions of
the world in order to teach the art of presence,
of staying in the now so that you have a
(06:53):
chance to reach your higher self. Meditation is offered and
that became a life long practice for us. We lived
in a brownstone on the Upper West Side at that
time with some good friends who were in the school also,
and that's where we raised our two boys and shared,
of course in the parenting activities. So even when we
(07:19):
moved to the Hudson Valley, family and spiritual work remained
the anchor of our marriage absolutely.
Speaker 3 (07:28):
And your family. You have two sons and you were
moved closer to be with them in the Hudson Valley
and at that point you were retirement age, so you
lived in this beautiful it is a beautiful area and
very spiritual in itself, yes, really really wonderful. And you
used to I remember, used to go to Florida to
(07:48):
spend the winters. That's what brought us to dun Eden
because you went there and we were like, if while
on Edgar there, it must have something really interesting about it,
and we found out it did. And you know, fifty
four is what an amazing you know, how lucky are
you to be able to marry anybody for fifty four years?
I don't know, David, and I won't reach that because
we got married so much later in life. We're still
(08:09):
maybe going to make eighteen this year and see how
it goes. I remember ed he we used to have
great conversations. He's a tall man. You can tell that.
He was very handsome, and he said, you played the piano,
you'd your cat, you guard, and you're a very fulfilling life.
So when was it? At what point and at what
(08:32):
age did you notice that his behavior was starting to
show signs that there may be some concern And this
is important because there's just all you know, like I
show signs of concerns sometimes and forget things. But when
does it go from oh I don't know where the
keys are to is there something else we should see
somebody about.
Speaker 4 (08:52):
That's a good question because we all forget things. I
mean I do too. Where'd I put my glasses? Where
did I put my cell phone? You know? But then
there's a point where yes, you need medical help. What
happened was, well, we were in Gardner at that time,
your neighbors and we were able to get in a
trip to France in twenty fifteen, which was wonderful because
(09:15):
we were celebrating our fiftieth wedding anniversary with fan member.
But then, starting around twenty eighteen, I began to notice things.
He was misplacing objects, putting dishes away in the wrong places. Now,
he was never a fan of kitchen clean up duties,
(09:36):
so I didn't take this seriously in the beginning. But
then he would do some strange things, like he'd put
a peanut butter jar in the freezer or leave a
wet a can of half can of wet cat food
in the cupboard. And I began to notice he was
forgetting things like what he's just said or what I
(09:58):
just said. In our conversations got disjointed. He would repeat
questions like how old am I or even something like
where do I sleep? So I realized there was short
term memory loss, and that's when we needed to go
see the.
Speaker 3 (10:14):
Doctor about how old was he At that time.
Speaker 4 (10:17):
He was just about turning eighty.
Speaker 3 (10:20):
Four, Okay, so you know that's not uncommon for people
of that age to flow down or even earlier. I'm curious,
you know, telling someone, you know, I know what it's
like with my husband. If I told him that I
think we need to go see somebody about something, he'd no, no, no,
(10:41):
I'm fine. I'm fine. I'm fine. That's met. I'm fine.
So how did you get him to a doctor and
what kind of doctor did you go to to start
the conversation? What was the process to lead to the diagnosis,
because a lot of people don't know where to start
to find out what the answers are.
Speaker 4 (10:57):
Yes, that's right. We were in Florida time. It was
the winter. We were in vacation there, and I suggested
to him that we just go to our doctor down
there for a checkup. He was okay with that, and
the doctor asked questions like, you know, who's the president,
(11:17):
what day is it, and those things, and I noticed
that he was not answering questions very well. So the
doctor actually prescribed a cat scan followed by a PET scan.
We went to the nearby hospital and got the cat scan,
which basically just showed normal deterioration for a man of
(11:41):
eighty four. But it's not a detailed scan like the
PET scan is. Pet scan actually targets the preedle and
temporal lobes, which is where you find an indication of
Alzheimer's because there would be damaged, major damaged plaque build up,
you know, dow tangles. All this stuff. He didn't want that.
(12:02):
He didn't want to do that. So I finally convinced
him because I said, Edward, we need to know the facts.
And so he got it. And then when we revisited
the doctor and he told us about the results of
the skin that yes, it did indicate Alzheimer's. Now that
(12:25):
really brings you up short. It caused a visceral and
psychological reaction for both of us. I mean, I knew
that there was no cure, and I also knew that
some people can have Alzheimer's. For twenty years, I was
looking forward then to caregiving for maybe twenty years. It
(12:45):
was like going into a dark tunnel with no end
in sight.
Speaker 3 (12:49):
Difficult did you at the time, What resources did you
lean on to help you, What did you find helpful
and what was lacking?
Speaker 4 (13:00):
Well? I read every book that I find, obviously starting
with A thirty six Hour Day, which is a classic,
but lacking. I mean, there's a stigma to Alzheimer's, you know,
and it's still there, so you don't want to talk
about it. It's difficult to find. I mean, you can
(13:21):
look online and all that, and the Alzheimer's Association is helpful.
Very helpful. Yeah, But other than that, it's something you're
dealing with by yourselves.
Speaker 3 (13:33):
Very much so, very much so I don't.
Speaker 4 (13:34):
Want to talk about it, you know, because it's threatening
your sense of your own humanity. When the brain begins
to deteriorate.
Speaker 3 (13:44):
Well, Alzheimer's, this kind of or cancer was forty fifty
years ago when you go, she has cancer, you Yessa,
and now people are reopened about cancer. But Alzheimer's is
tough because it is a deterioration of the brain. And
you go into using your rese skills, incredible detail about
(14:05):
the brain and understanding it because you wanted to understand
what was going on. You know, that part of the
book is detailed. Not everybody can jump you know, it's
not dumb down. It's very honest in depth. But it
was very helpful to understand. I mean, this is a
multifaceted degenerative illness exactly.
Speaker 4 (14:26):
And I felt it was very important and right in
the beginning chapters, right to share what I had learned
about the brain. And I'm not a scientist in that way,
but I studied it and tried to make it as
readable as possible accessible. You need to know what to
anticipate what to prepare for if you can prepare, you know,
as much as you.
Speaker 3 (14:46):
Can well exactly. I think one of the most helpful
parts of the book, and this is just about when
Sally David's mother was you know, she had dementia, and
then suddenly they said Alzheimer's. So you know, we'll get
into that. So I wanted you talk about the stages
of Alzheimer's. So my first question is when is dementia,
(15:08):
which is very common, become Alzheimer's. And then let's talk
about the stages because there's four yes here, so talk
about that.
Speaker 4 (15:18):
Okay, go ahead, Oh okay. So well, dementia is a syndrome. Okay,
there's there's different kinds, so we can talk about that
later if you won't. But but Alzheimer's is mainly diagnosed
through this through the PET scan, which we now have.
I mean, people probably had it a long time ago,
(15:39):
you know, in our grandmother's day, and but but we
called it senility and people didn't didn't didn't have any
way of knowing that it packs the freedle and temporal lobes.
But so talking of the of the stages, the first
one is the mild or early stage, and and people
(15:59):
need to know that that's just what I described before you.
The person in misplacing objects has memory lapses, I can't
organize things. I took over the paying of the bills
and doing the taxes. And then something called the sundown
syndrome where the person in the evening particularly gets very agitated,
(16:22):
very anxious. He's beginning to forget things, getting confused, and
then denial sets in. It's, you know, events.
Speaker 3 (16:33):
That's interesting because as I read that, and I thought
about when I came home to take care of my mother,
who hated doctors and would never go get diagnosed for anything,
so we really don't know what was going on. I
often wonder if that was happening, because every single one
of those descriptions could pay the bills, anxiety, agitation at night,
misplacing objects, even valuable ones. I mean, he misplaced your
(16:55):
wedding weight, Oh my god, and you found it.
Speaker 4 (17:00):
You know.
Speaker 3 (17:01):
I My own mother was doing that, So I always wonder.
But that that is very common, and many people think
that that's just not just but that is dementia. But
here it's it's early stage, and that's when it's really
kind of imperative to go see it's a medical specialist
and have as you said, a pet scan, not just
a cat scan, but a pet scan scan.
Speaker 4 (17:22):
And then, like with the denial, that can last a
long time. With Edward, it lasted actually almost into the
sixth year, with little eruptions of recognition and admission along
the way. It just there's an awareness there in the
person has to be remembered. There's an awareness. It's our
human gift of awareness. And even underneath the fear and
(17:45):
the anger and all of that and the denial is
awareness and that has to be respected in the person.
Especially as it continues in the next stage, you're going
to get trouble with language, comprehending conversations, being able to
articulate what you want to say. That's because the Broca
(18:07):
and Wernikey regions, which are in your temporal lobe, are deteriorating,
and those are centers of language. There's also mood swings
that begin and losing your sense of your body in space.
Now we don't even think of that, but for someone
without Somer's it's called proprioception. It's a function of the pretolobe.
(18:30):
I explain this in the book where you lose your
sense of your body in space and its relation to
the objects around you. So, for example, we would go
out doing errands, we go to the post office, the bank,
the shopping and so forth. We'd get back home, he
would be not only fatigued, but completely disoriented. He couldn't
(18:53):
keep up with where we were going. Even in his
own house, he would get lost. There's that that, you know,
and the mood swings increase for me to go on
with the third stage, because we need to know about
these things.
Speaker 3 (19:09):
Yeah, no, I think it's important to the third stage.
Is it gets into paranoia and delusion, which is really
a big indication of Alzheibers because they can get violent.
Speaker 4 (19:20):
Yeah, they can. At one point when we moved, actually
it was kind of caused by the move to the
first to the one story house. I have never, you know,
feelings about that either way. I'm not sure it was
the right thing. But he accused me of kidnapping.
Speaker 3 (19:37):
Him, right. He tried to hit he was going to
hit you.
Speaker 4 (19:39):
Yeah. I had to call my sons in. I had
to get help, you know. So there's that, there's depression,
emotional outbursts. There was a it's also time when they
forget how to do ordinary things like putting on their clothes.
I went into the bathroom. I remember he had taken
(20:00):
a shower and he had put his he was trying
to put his tank top undershirt on and he had
put his head through the armhole and he was stuck
and I unstuck him and we actually had a good
laugh about that. I mean, this is another thing you
have to kind of somehow keep your sense of humor,
(20:21):
keep your cheerfulness, I mean, without being phony. Just try
to stay upbeat if you can. It's not easy. Yeah,
And then you have the severe stage where the person
sleeps a lot, he has trouble balance and with walking
and falling. Edward and I used to have this little
(20:44):
routine because he was getting very shaky at that point.
This was in the fifth year. We stand up. He
would stand up by his wingback chair where he sat
a lot, and we would stand together in march in
place before he walked, so that he would gain some
sense of balance. But I wasn't always in the room
(21:05):
to be there with him, and he fell a couple
of times, yeah, without injury. But then finally he did
fall and injured himself and it provoked a stroke, and
that's when you come into the final severe stage, bedridden,
unable to speak, loss of appetite, and then you you
(21:27):
can call hospice, which I did. Is a wonderful organization.
Speaker 3 (21:32):
Very well. You know, it was interesting you call. I mean,
it's remarked six years is a long time because I
took care of my mother for a year and it
just about killed me. Okay, so and and and you know,
so hospice is important. And I think it's when you
finally called hospice. I was like, yay, she called hospice,
because I was like, you need hospice, and hospice is
(21:54):
for everybody listening and watching, it is so important to
reach out and ask for help because hospice does everything,
including giving you the caregiver time to take care of
yourself because often the caregiver's health and mental and physical
health is incredibly impacted, as as your as a spouse,
(22:17):
as a husband. I mean, I recently had some surgery Leilah,
and I was pretty helpless and David had just had
to help me dress. It's been pretty awful and I
can and I feel bad so reading this and just
having gone through it at a lesser stage, but still
(22:39):
feeling helpless. It is very hard to suddenly be go
from being a lover and a husband and my relationship
to suddenly you're helping your love when put their panties
pants on and get dressed, and cleaning up it and
trying to convince them they need depends and you're dealing
with a child. And I remember dealing with that with
my mother and that was very heart How did you
(23:02):
work that through in your head? Because I know it
was hard for you that way and also hard for
ad as the husband, caregiver, provider, strong man that he was.
Speaker 4 (23:12):
That's a very important point. Yes, I mean a woman
has a natural ability to take care of things. I
mean she is a caregiver to her husband, to her home,
her children if they haven't eed her pets. So Edward
actually appreciated my support as a wife and caregiver, but
(23:35):
it was when we got to the need for me
to take on additional roles, particularly that of parent. Yeah,
because I then we had a strain in the relationship.
Because you remember the person, even though they have Alzheimer's,
they're aware, they're sensitive, emotional sensitive, and he he was
(23:56):
sensitive to the fact that he was taking a subordinate
role as if he were a child, and he's not
a child, and I had to be very sensitive to that.
And in fact, there were times where I, as a mother,
had to lay out his clothes and help him dress.
(24:16):
But what I tried to do is step back and
let him do as much as he could by himself.
But if he couldn't button his shirt and he was
getting frustrated, I had to gently, you know, help him.
That was the way it was so with any caregiver
coming onto this role for the first time. Let me
(24:40):
just say that the most important thing is to remember
that the person with Alzheimer's is a person. There's still
a human being, and they have a long history. They're
a spiritual being. They are aware, even into the end,
they are or aware and that needs to be respected.
(25:01):
And I learned that it's tough.
Speaker 3 (25:04):
It's a tough thing because you are you do become
a parent, and suddenly conversations become all about did you
brush your teeth, did you put your clothes on? What
did you go to the bathroom where you put it back?
And you forget that there's that you really want to
have a normal conversation with person because you want them
to feel normal themselves.
Speaker 4 (25:25):
Yes, yeah, you want who they're not. They know, they
know they have it underneath all of that denial. They know,
but you still want to treat them and as normal
because they aren't some extent underneath a So what are.
Speaker 3 (25:41):
Some things that you did to try to Well, there's
two things. First, what did you do to try to
make things feel normal for both of you as over
these six years as things progressed? And what would you
advise anyone gives them, maybe give an example or two
things you did together to kind of strengthen you both emotionally.
Speaker 4 (26:06):
Well, emotionally, I mean that the spouse, and we're talking
about spouses here, but it can be of course anyone,
your mother, your daughter, whatever it is. But as the spouse,
the spouse with the Alzheimer's disease needs to feel needs
to feel loved and respected. So with for example, I
had to respect and accept the fact that Edward was
(26:30):
in denial in order to shield himself from the truth
which he knew until he was ready to accept it.
And until he was ready to accept it, I had
to accept and try to make to normalize our relationship
as much as possible. I had to learn patience empathy
(26:52):
forbearans when things got tough. I didn't always succeed, but
I did learn. For example, when he would get frustrated.
He would get frustrated doing simple handyman things that had
been his profession. So say he was securing a flower
box on the railing with new screws and he was
having trouble and I was standing by. He would turn
(27:14):
on me sometimes in his frustration and lash out and say,
you know, leave me alone. I this is what I do.
What I had to learn was to absorb those outbursts
and to stay quiet. And I was able to do
that when I was able to because I saw that
(27:35):
he was suffering, so my heart could reach out into
his pain and soothe him.
Speaker 3 (27:45):
You know, they're, like I call them, emotional landmines. You
don't know when they're going to happen, and sometimes you're
completely taken aback when they do.
Speaker 4 (27:53):
Right, Yes you are, I mean I I The worst
one was when he would would project his anger onto me,
and I had to be careful not to react in kind.
I didn't always succeed, but I but when I did,
it was because of two things. One, he was sick.
(28:17):
I wasn't. He was the one having difficulty controlling his emotions.
I had the freedom to control mine, and I had to.
I mean, my role was selfless service. Ego had to
take a back seat. I knew that. And the second
one was to remind him and myself that we are
(28:40):
not the body. We have a body, we're spiritual beings,
embodied souls. And when I lost my bearings, he reminded me.
Speaker 3 (28:50):
Well, you drew a lot on your spirituality. You both
are very you both meditate, you both come from a
point of you know, because of philosoph and spirituality. How
did that How did you work that into a practice
to keep you both stable and bonded and also talk
(29:13):
about things like art and music, which was very therapeutic.
Speaker 4 (29:17):
Okay, sure, well. The practice of meditation remained steady for
the six years, even though sometimes he would just sit
and I know he wasn't really meditating because he would
open his eyes sometimes and say where are we or
are do you want me to take the garbage out?
Or something irrelevant. But in the evenings, because he slept
(29:40):
so late in the morning, we would sit together and meditate.
We would sit on the couch with our bodies touching,
and touch becomes an extremely important thing for somebody with
Alzheimer's because the tactle connection tells the person that you
love them. It's very important support. And then, interestingly enough,
(30:01):
and this was in the last year, there was a
day long meditation intensive offered at an ashram near us,
and I didn't know if he was up to it,
but I decided to ask him, and I was surprised
by his answer. He said to me, of course I
want to go. I'm a spiritual being, so you know,
(30:27):
that really moved me. And we did go, and he
was able to last through it, even though he dozed
off most time. As far as art and music, you know,
these are wonderful ways to nourish the soul of the
person with Alzheimer's. I mean on the book cover, for example,
of my book is one of his Japanese brush paintings.
Speaker 3 (30:50):
Beautiful, isn't it? I mean beautiful?
Speaker 4 (30:53):
Yeah, And his artistic abilities were really awakened in the
art classes he took when he was when he was sick.
I find that spiritual practices that the person gravitates too,
because not everybody has the same spiritual inclination and creative
(31:13):
creative arts are the two ways that you can nurse
the soul. Music, for example, did you I wasn't aware
of this, but music activates more parts of the brain
than any other stimulant. Interesting, it's human, it's uniquely human,
hardwired along with language in our brains. And in the book,
(31:37):
I talk about the work of Dan Cohen, a social
worker who introduced music therapy into nursing home where there
were Alzheimer's patients in advanced stages. And he found that
when he introduced that personal musical favorite for that particular person,
(31:59):
that person who is like in communicato, would wake up,
light up, move his body to the music, to the rhythm,
and then he'd want to talk about all the stories
of his youth when he was enjoying that music with
other people. So there's a lot there buried in the
(32:19):
person that can be brought out through music and art.
Speaker 3 (32:23):
I couldn't read more. It's also a very important cancer treatment.
There's a whole music and art therapy. It's across the
board anyone who's dealing with a major illness or.
Speaker 4 (32:35):
Middle illness and of life.
Speaker 3 (32:37):
Music is so important. When my mother was dying, we
played music and it was over the Christmas holidays. We
watched She watched The Nutcracker NonStop is an opera, and
I used to when I was going through chemotherapy during
my breast cancer treatment. I would go to the opera
mm hm and just sit and listen.
Speaker 4 (32:57):
Very healing, very soothing. We played music for when he
was dying. We played a certain Sanskrit chance because we
knew some of those, and also some monks singing chants.
So yeah, whatever the person loves is good to play. Yeah.
Speaker 3 (33:16):
I think also conversation. Another challenge many caregivers have is
they lose conversation because they're busy telling the loved one
what to do, or it becomes more commanding and demanding
versus conversation. Talk to me about how you nurtured the spirit,
because this is what a lot of the book is
about through through having conversations and reflection.
Speaker 4 (33:39):
Well. And I encouraged our grandsons and our sons, because
we have two sons and four grandsons, that when they
came to visit, I encouraged them to talk to your dad,
your granddad, ask some questions about about the theater, about philosophy,
you know, things that they knew that their dad loved exactly,
(34:01):
even talk to him about his Porsche that he had.
You know, find out the thing is that the person loves,
and then bring it out in conversation and you'd be
surprised at what they know and remember you know, and
then they get excited. That kind of joy and self esteem,
even if it's temporary, is delightful for them and satisfying.
Speaker 2 (34:24):
Yeah.
Speaker 3 (34:25):
I think too many people come in and they start
say how are you feeling, and what are you doing
and what do you need? And they focus on they
focus on the disease for the illness and not on
the person. And I remember I recorded conversations with my
mother and let her talk about her days of your
work as I was doing articles, and we ended up
doing a video. This is a great time to capture
(34:46):
your loved one on video doing or audio because obviously
when they're gone, they're no longer with you and you
can go back and watch this. Did you do any
of that?
Speaker 4 (34:57):
Oh, that's an interesting question. I'm just thinking now I
wish we had. Well, actually, we have a few videos
we do that my daughter in law took on her
phone and and that, and then we have also tapes
that actually Edward made of books that he he wanted
(35:21):
to record in his own voice, spiritual books, and I
got headphones for him and he would listen to those,
you know, his own voice speaking the spiritual message that
he loved so much. So there are different and now
with the technology, there's a lot we can do to Boston.
Speaker 3 (35:42):
Yeah, I would encourage anybody to get the voice and
images and record the conversations because when the person is
no longer with you, they can be invaluable for you
and your grand your children and grandchildren, and I think
that's really really important. One of the things that was interesting,
and this happened actually with my father and also my mother,
(36:05):
is as they're in that later stage, there's like this
miraculous comeback where they come back and you're like, are
they back? Are they? And that happened to you it
was Christmas. Talk about that episode because it was stunning
for everybody.
Speaker 4 (36:23):
Yes, I actually put that in the introduction to the
book because it was stunning and it shows that the
person is still there underneath everything. In this case, we
had invited his niece and her husband for Christmas and
we all were together in the house for a Christmas party,
(36:48):
and he was dozing off in the chair and this
was like, oh, this was almost to the end of
his life, and he was dozing off, and suddenly he
came into an erect posture and he began to conduct
a class in philosophy. Amazing, with all of the Socratic
(37:12):
question and answer. He was like he was normal, completely,
not only normal. It was brilliant. And everybody was just
stunned and standing there out of breath because we couldn't
believe that this lasted for about twenty minutes. Wow, it
(37:32):
was as if he was never sick. So that shows
you something, doesn't it. It shows that there's still the
capacities are there. They're just buried under loads of plaque
and dow tangles and stuff.
Speaker 3 (37:47):
It's really remarkable. It happened my father Lily called me.
I went home to say goodbye to him, and then
he called. He said, I'm doing your taxes. Oh God,
why did you take all the fire? And I was like,
but that was on. And right before my mother passed,
we actually did a video with her. Oh and she
basically her voice was strong. We had propped up in
(38:09):
bed an amazing forty five minute video. Literally two days
later she lost your voice. Wow, Wow, amazing, But so
I do believe I have not read the Alupa Kopler
Ross book, but I don't know what that phenomenon is.
But it's like that renewed life before you die phenomenon,
and I've heard about it over and over again.
Speaker 4 (38:30):
Well, yes, there's a lot of documentation about it, and
actually the Institute of Noetic Sciences, which was founded by
edgar Mitchell, the astronaut who had a transcendent experience in
outer space. Anyway, he established this institute. I would encourage
people to go online and look into it because they
(38:50):
study this very phenomenon.
Speaker 3 (38:55):
You know.
Speaker 4 (38:55):
Sometimes it's called paranormal because people can't understand it. How
can a person who's dying and like hours before he
dies and he has no brain tissue left, hardly any left,
wakes up and talks to you incredible? How do you
explain that it's it's.
Speaker 3 (39:15):
Like miraculous, but it's it's common and it's like wow,
and hopefully we did you. I just I thought that
was just a pin drop moment in the book. Thinking
about your family. So as you were flexed, how are
you dealing with your grief since it's been what two
years or three years now.
Speaker 4 (39:32):
It's almost three. It's going almost three.
Speaker 3 (39:35):
How have you been dealing with your grief since his passing?
Speaker 4 (39:40):
Well, my family and my sons and their wives and
four grandsons who were supportive during the illness and after
he passed and they still are. After the funeral, we
gathered together and spread his ashes under two young peach trees.
We sat amazing grace and said prayers and then shared memories,
(40:05):
and that was very fortifying for myself. I I it
was funny. I couldn't grieve in tears for maybe three
weeks to a month, and then suddenly something triggered it
and I cried for three days. And so you have
to kind of give time for the healing of the wound.
(40:27):
And then I kept busy. I started teaching lifelong Learning
center courses and lifelong lifelong learning campuses and I still
am doing that. And I wrote this book because this
book is a cathartic release. It was also a way
(40:49):
for me to share what I learned with fellow caregivers.
Speaker 3 (40:56):
So and in summering summarizing it up, and let's put
the book back on the screen. Wine, what are some takeaways?
What do you want people who read My Years as
an Alzheid caregiver, and the underline is transcending loss by
nurturing spirit. What do you want people to take Readers
to take away from this, and particularly caregivers.
Speaker 4 (41:18):
I would say to remember that as they're caring for
this person, that the person is a human being. Yes,
And to draw out as much as you can from
that person's life, to explore it with him, to uncover talents,
and to remember that the person is a spiritual being
(41:41):
and that you're there to serve them selflessly. There's a
wonderful short poem by Rabindernath to Gore, the Indian poet,
If I could just recite, it's very short, Yes, of course,
about service. He says, I slept and dreamt that life
was joy. I awoke and saw that life was service.
(42:07):
I acted and behold, service was joy.
Speaker 3 (42:14):
Beautiful. Yeah, and that's really you know, the caregiver role
is a very many people think it's an honored role.
It's a special role, you know. I mean sometimes you
just think it's torture, but it's you know, many people
said to me, you were so lucky you were able
to take care of your mother or in your case,
(42:36):
and you may not feel it all the time, but
but but the reality is it's it's it's a gift
to be able to do that. Many people don't have
that gift because they lose a love one suddenly, and
that's another tragic loss. That's even completely different because at
least you have time as a caregiver to prepare yourself
mentally for the impending loss. It's it feels like a
(42:59):
long timeunnel dark. For me, it felt like a long
dark tunnel waiting for the crash. You just have to
work it through. But but you know you were able
to spend these amazing six years with him to help
him transition his life.
Speaker 4 (43:14):
Yes, it is an honor, it really is, even though,
as you say, it's not always easy at all and
you don't always succeed at it. But but that's that's
your role and you're lucky to have it.
Speaker 3 (43:26):
And you know, for everybody watching, you know, it is
an inevitable part of your life that at some point
someone you love is going to need to be cared for.
And you know, many people I'm not I was never
a parent, so I don't know what it's like to
care for a child, a baby and you know that transition,
(43:48):
but you know it's it's basically your role becomes that
again but in a different way. Yes, and you just again,
I think the underscore it's about realizing this person is
a person, they have a spirit, they're an adult. You
have to treat them as an adult. They had a
most likely an amazing life, and you have to respect
(44:11):
and honor that, even if they're not this person they
used to be.
Speaker 4 (44:16):
Exactly that's well said, yes.
Speaker 3 (44:18):
Yeah, yeah, And how are you doing now spiritually and
as you reflect back on this, because I know there
are triggers and for everybody watching, listen, Lilah's right, and
I'll echo, the crying is not immediate. There's usually something
down the road unexpectedly and the trigger hits and you
(44:40):
just become waterworks.
Speaker 4 (44:41):
Exactly exactly.
Speaker 3 (44:43):
It's happened to me too.
Speaker 4 (44:45):
Well, Oh good, I'm glad I'm not the only one.
Speaker 3 (44:47):
Oh no, it happened to be in the middle of
Commander's Palace anniversary lunch with David and I remember at
our wedding and my parents. All of a sudden, I
just be I don't even remember the lunch. I didn't
have a couple of twenty five cent mark TVs didn't help,
but I was a puddle.
Speaker 4 (45:03):
Yeah, yeah, I mean holidays can be hard. I mean
Thanksgiving after he passed. The first Thanksgiving, we were all tearing,
you know, even my son who was who was conducting
the Thanksgiving dinner and prayer, and suddenly he just couldn't,
couldn't do it anymore.
Speaker 3 (45:20):
You know, there's the empty chair at the table, and
that is there's the empty chair exactly, That's what it is.
Speaker 4 (45:25):
So you know, but you go on with your life
and I've I continue to meditate, and I'm reading some
of the books that he used to read and that
kind of thing. You know, yeah, he.
Speaker 3 (45:39):
Still gets good. You know, you're with him in spirit,
and you're you've got these beautiful brush drawings and all
the happy memories and the tapes. So yes, exactly, and
you traveled so much. You had a very rich life together.
And I think that in parting, I think what's important
is you know, whoever you're with is your soulmates. Yes,
you know, try to spend the best of your life,
(46:00):
life the best years of life, doing things you really
enjoy and not saying, oh, let's wait, just do it
because you don't know when that opportunity may not be there.
Speaker 4 (46:09):
Exactly. That's very good advice for sure.
Speaker 3 (46:11):
Yeah, and you know, less complaining and criticizing and more
just saying let's go out and have a good time.
Speaker 4 (46:18):
Exactly. Good.
Speaker 3 (46:19):
Yeah, it's great. Well, I you know, Leila, it's been
really great to see you. This was a really amazing book.
Like I said, I had to read it slowly and
put it down because it hit home and a lot
of parts. Even though my experience was losing a mother
who I think had some dementia, we no never know
because she never went to the doctor, but it hit
(46:40):
home and I have so many friends going through this.
So for everyone watching and listening again, the book is
my years as an Alzheimer's caregiver, transcending loss by nurturing spirit.
And yes, the Alzheimer's Foundation is a wonderful source. I
think I have it a you know, a AFDN dot
(47:01):
org is what I have. There are resources out there,
so you know, don't try to be a hero alone.
Bring people in to help you.
Speaker 4 (47:10):
Exactly. Thank you, Melanie, it's been great with you.
Speaker 3 (47:14):
It's been great seeing you. I hope that we get
to go back up to the Hudson Valley sometime and
a time up there. We do miss it. We love
where we are, but we love where we were as well,
every stage, and I wish you all the best with
life moving forward.
Speaker 4 (47:32):
Thank you, Same to you. Melanie.
Speaker 3 (47:34):
So you've been listening to Fearless Fabulous You, I'm Melanie Young.
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channels to listen on demand. Please listen and share it
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also see it on YouTube at Melanie Young my channel.
Always you have choices in life on what you want
(47:54):
to do and who you want to spend your time with,
and how you want to be spending your time doing it.
I always say, choose to live life on your terms
and not on terms set by other people, and always
choose to live fearlessly and fabulously. Thank you,
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(00:20):
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Speaker 2 (00:21):
Thank you for choosing W four WN Radio.
Speaker 3 (00:41):
Hello, and welcome to Fearless Fabulous You. I am your host,
Melanie Young, and thank you for joining me on the
Women Women Network. You're watching live is November twelfth, twenty
twenty five, and I am addressing a topic that is
so important and has acted so many of my friends,
(01:02):
my loved ones, and including my husband and I, David.
November is Alzheimer's Awareness Month. Of course, I believe that
awareness and all health and wellness topics are at three
sixty five year round consciousness effort, but November is Alzheimer's
Awareness Month, and more than six point two million Americans
(01:24):
are living with Alzheimer's and many people are caring for
loved ones with Alzheimer's. In fact, last night, a very
good friend of mine came over to visit and she
is currently caring for her seventy eight year old mother
who has Alzheimer's. My husband David just recently lost his
mother who had Alzheimer's. And I could go on and
(01:45):
on about friends now who are in the caregiver role,
which is I've been that person as well. It's not
easy to go from family member, whether it's a spouse,
a daughter, or you know, a sibling, to caregiver. So
today's show is going to address the topic of caring
(02:07):
for a loved one with Alzheimer's. And my guest is
someone that I know personally because she used to be
my neighbor in the Hudson Valley when David and I
lived in Gardner, New York. And her name is Lilah Yastun,
and she and her husband Edward were our next door neighbors,
and we spent a number of wonderful evenings just sitting
(02:28):
out having drinks and talking about life and the environment
and politics and current affairs and really great memories. Lilah
is shares a very open and honest account of the
six years where she served as the sole caregiver to
(02:48):
her husband Ed when he was diagnosed with Alzheimer's. The
diagnosis came while we were still living in New York.
It was in the early time. We have since moved sadly.
Ed passed I think two years ago, and Lilah has
written this very open, honest and informative book that I
(03:12):
think would help anyone who is caring for a love
withe with Alzheimer's. It's called Let's Show It on the Screen.
My Years as an Alzheimer's Caregiver Transcending Loss by Nurturing Spirit.
It is a new release. It includes her detailed journal
entries as well as a lot of research that Lila
(03:32):
did about how the brain functions. Lila has a PhD.
She is a teacher, and she and Ed actually came
together through their love of philosophy, and we're going to
share their love story and we're in then we're going
to share how Lilah helped Ad and cared for him
to the end of his life. And hopefully from this
(03:53):
you'll have some takeaways if you are currently caring for
a loved one with Alzheimer's. So Lyla Aston welcome to
Fearless Fabulous you thank you, thank you, Melanie.
Speaker 4 (04:03):
It's good to see you.
Speaker 3 (04:05):
Well. I have to say your book hit a lot
of nerves. I had to read it in pieces because
even though my late mother did not have Alzheimer's, the
caregiver part was it hit a lot. It hit a lot.
It really touched a lot of nerves. I read it
in pieces, and your honesty and openness is just remarkable.
(04:26):
So thank you for sharing that. Before we get into
what you went through over that six years, would love
for you to talk about Ed and how you met,
because you had an amazing love story and you were
married for fifty four years.
Speaker 4 (04:40):
Yes, we were. We met actually at a drama school
in New York City. We were both students at the
Herbert Berghoff Studio, and he met me. He stopped me
in a stairwell and asked to read my palm, which
of course intrigued me. He had a kind of intensity
(05:04):
about him, disarming smile, and he basically swept me off
my feet. We developed a romantic relationship, and we also
found out that we were had a common interest in philosophy, spirituality,
and even Russian literature. So that's how we met.
Speaker 3 (05:29):
Wow, you know you had a prooful career. He also,
because acting is not always an easy way to earn
a living, he had a carpentry business, right.
Speaker 4 (05:39):
Yes he did. He was a master carpenter and cabinet maker.
He remodeled all of the houses that we lived at,
including the Brownstone in New York City where we lived
for ten years.
Speaker 3 (05:53):
Oh wow, So what are some of the you know,
I know that spirituality bonded you. In the school that
you became involved with. I think it's called practical Philosophy.
What what tell us about that bond and what you
out enriched your life? Dessert.
Speaker 4 (06:11):
Well, while while we were dating and in the early
years of our marriage, we actually continued with a theater
and we founded a summer stock company in Rhode Island
and did a number of seasons of place. But we
had this deep interest in self development. So living in
(06:32):
the city, we joined the School of Practical Philosophy and
we took classes and taught classes there. The school is
eclectic in its methods. It gathers the spiritual traditions of
the world in order to teach the art of presence,
of staying in the now so that you have a
(06:53):
chance to reach your higher self. Meditation is offered and
that became a life long practice for us. We lived
in a brownstone on the Upper West Side at that
time with some good friends who were in the school also,
and that's where we raised our two boys and shared,
of course in the parenting activities. So even when we
(07:19):
moved to the Hudson Valley, family and spiritual work remained
the anchor of our marriage absolutely.
Speaker 3 (07:28):
And your family. You have two sons and you were
moved closer to be with them in the Hudson Valley
and at that point you were retirement age, so you
lived in this beautiful it is a beautiful area and
very spiritual in itself, yes, really really wonderful. And you
used to I remember, used to go to Florida to
(07:48):
spend the winters. That's what brought us to dun Eden
because you went there and we were like, if while
on Edgar there, it must have something really interesting about it,
and we found out it did. And you know, fifty
four is what an amazing you know, how lucky are
you to be able to marry anybody for fifty four years?
I don't know, David, and I won't reach that because
we got married so much later in life. We're still
(08:09):
maybe going to make eighteen this year and see how
it goes. I remember ed he we used to have
great conversations. He's a tall man. You can tell that.
He was very handsome, and he said, you played the piano,
you'd your cat, you guard, and you're a very fulfilling life.
So when was it? At what point and at what
(08:32):
age did you notice that his behavior was starting to
show signs that there may be some concern And this
is important because there's just all you know, like I
show signs of concerns sometimes and forget things. But when
does it go from oh I don't know where the
keys are to is there something else we should see
somebody about.
Speaker 4 (08:52):
That's a good question because we all forget things. I
mean I do too. Where'd I put my glasses? Where
did I put my cell phone? You know? But then
there's a point where yes, you need medical help. What
happened was, well, we were in Gardner at that time,
your neighbors and we were able to get in a
trip to France in twenty fifteen, which was wonderful because
(09:15):
we were celebrating our fiftieth wedding anniversary with fan member.
But then, starting around twenty eighteen, I began to notice things.
He was misplacing objects, putting dishes away in the wrong places. Now,
he was never a fan of kitchen clean up duties,
(09:36):
so I didn't take this seriously in the beginning. But
then he would do some strange things, like he'd put
a peanut butter jar in the freezer or leave a
wet a can of half can of wet cat food
in the cupboard. And I began to notice he was
forgetting things like what he's just said or what I
(09:58):
just said. In our conversations got disjointed. He would repeat
questions like how old am I or even something like
where do I sleep? So I realized there was short
term memory loss, and that's when we needed to go
see the.
Speaker 3 (10:14):
Doctor about how old was he At that time.
Speaker 4 (10:17):
He was just about turning eighty.
Speaker 3 (10:20):
Four, Okay, so you know that's not uncommon for people
of that age to flow down or even earlier. I'm curious,
you know, telling someone, you know, I know what it's
like with my husband. If I told him that I
think we need to go see somebody about something, he'd no, no, no,
(10:41):
I'm fine. I'm fine. I'm fine. That's met. I'm fine.
So how did you get him to a doctor and
what kind of doctor did you go to to start
the conversation? What was the process to lead to the diagnosis,
because a lot of people don't know where to start
to find out what the answers are.
Speaker 4 (10:57):
Yes, that's right. We were in Florida time. It was
the winter. We were in vacation there, and I suggested
to him that we just go to our doctor down
there for a checkup. He was okay with that, and
the doctor asked questions like, you know, who's the president,
(11:17):
what day is it, and those things, and I noticed
that he was not answering questions very well. So the
doctor actually prescribed a cat scan followed by a PET scan.
We went to the nearby hospital and got the cat scan,
which basically just showed normal deterioration for a man of
(11:41):
eighty four. But it's not a detailed scan like the
PET scan is. Pet scan actually targets the preedle and
temporal lobes, which is where you find an indication of
Alzheimer's because there would be damaged, major damaged plaque build up,
you know, dow tangles. All this stuff. He didn't want that.
(12:02):
He didn't want to do that. So I finally convinced
him because I said, Edward, we need to know the facts.
And so he got it. And then when we revisited
the doctor and he told us about the results of
the skin that yes, it did indicate Alzheimer's. Now that
(12:25):
really brings you up short. It caused a visceral and
psychological reaction for both of us. I mean, I knew
that there was no cure, and I also knew that
some people can have Alzheimer's. For twenty years, I was
looking forward then to caregiving for maybe twenty years. It
(12:45):
was like going into a dark tunnel with no end
in sight.
Speaker 3 (12:49):
Difficult did you at the time, What resources did you
lean on to help you, What did you find helpful
and what was lacking?
Speaker 4 (13:00):
Well? I read every book that I find, obviously starting
with A thirty six Hour Day, which is a classic,
but lacking. I mean, there's a stigma to Alzheimer's, you know,
and it's still there, so you don't want to talk
about it. It's difficult to find. I mean, you can
(13:21):
look online and all that, and the Alzheimer's Association is helpful.
Very helpful. Yeah, But other than that, it's something you're
dealing with by yourselves.
Speaker 3 (13:33):
Very much so, very much so I don't.
Speaker 4 (13:34):
Want to talk about it, you know, because it's threatening
your sense of your own humanity. When the brain begins
to deteriorate.
Speaker 3 (13:44):
Well, Alzheimer's, this kind of or cancer was forty fifty
years ago when you go, she has cancer, you Yessa,
and now people are reopened about cancer. But Alzheimer's is
tough because it is a deterioration of the brain. And
you go into using your rese skills, incredible detail about
(14:05):
the brain and understanding it because you wanted to understand
what was going on. You know, that part of the
book is detailed. Not everybody can jump you know, it's
not dumb down. It's very honest in depth. But it
was very helpful to understand. I mean, this is a
multifaceted degenerative illness exactly.
Speaker 4 (14:26):
And I felt it was very important and right in
the beginning chapters, right to share what I had learned
about the brain. And I'm not a scientist in that way,
but I studied it and tried to make it as
readable as possible accessible. You need to know what to
anticipate what to prepare for if you can prepare, you know,
as much as you.
Speaker 3 (14:46):
Can well exactly. I think one of the most helpful
parts of the book, and this is just about when
Sally David's mother was you know, she had dementia, and
then suddenly they said Alzheimer's. So you know, we'll get
into that. So I wanted you talk about the stages
of Alzheimer's. So my first question is when is dementia,
(15:08):
which is very common, become Alzheimer's. And then let's talk
about the stages because there's four yes here, so talk
about that.
Speaker 4 (15:18):
Okay, go ahead, Oh okay. So well, dementia is a syndrome. Okay,
there's there's different kinds, so we can talk about that
later if you won't. But but Alzheimer's is mainly diagnosed
through this through the PET scan, which we now have.
I mean, people probably had it a long time ago,
(15:39):
you know, in our grandmother's day, and but but we
called it senility and people didn't didn't didn't have any
way of knowing that it packs the freedle and temporal lobes.
But so talking of the of the stages, the first
one is the mild or early stage, and and people
(15:59):
need to know that that's just what I described before you.
The person in misplacing objects has memory lapses, I can't
organize things. I took over the paying of the bills
and doing the taxes. And then something called the sundown
syndrome where the person in the evening particularly gets very agitated,
(16:22):
very anxious. He's beginning to forget things, getting confused, and
then denial sets in. It's, you know, events.
Speaker 3 (16:33):
That's interesting because as I read that, and I thought
about when I came home to take care of my mother,
who hated doctors and would never go get diagnosed for anything,
so we really don't know what was going on. I
often wonder if that was happening, because every single one
of those descriptions could pay the bills, anxiety, agitation at night,
misplacing objects, even valuable ones. I mean, he misplaced your
(16:55):
wedding weight, Oh my god, and you found it.
Speaker 4 (17:00):
You know.
Speaker 3 (17:01):
I My own mother was doing that, So I always wonder.
But that that is very common, and many people think
that that's just not just but that is dementia. But
here it's it's early stage, and that's when it's really
kind of imperative to go see it's a medical specialist
and have as you said, a pet scan, not just
a cat scan, but a pet scan scan.
Speaker 4 (17:22):
And then, like with the denial, that can last a
long time. With Edward, it lasted actually almost into the
sixth year, with little eruptions of recognition and admission along
the way. It just there's an awareness there in the
person has to be remembered. There's an awareness. It's our
human gift of awareness. And even underneath the fear and
(17:45):
the anger and all of that and the denial is
awareness and that has to be respected in the person.
Especially as it continues in the next stage, you're going
to get trouble with language, comprehending conversations, being able to
articulate what you want to say. That's because the Broca
(18:07):
and Wernikey regions, which are in your temporal lobe, are deteriorating,
and those are centers of language. There's also mood swings
that begin and losing your sense of your body in space.
Now we don't even think of that, but for someone
without Somer's it's called proprioception. It's a function of the pretolobe.
(18:30):
I explain this in the book where you lose your
sense of your body in space and its relation to
the objects around you. So, for example, we would go
out doing errands, we go to the post office, the bank,
the shopping and so forth. We'd get back home, he
would be not only fatigued, but completely disoriented. He couldn't
(18:53):
keep up with where we were going. Even in his
own house, he would get lost. There's that that, you know,
and the mood swings increase for me to go on
with the third stage, because we need to know about
these things.
Speaker 3 (19:09):
Yeah, no, I think it's important to the third stage.
Is it gets into paranoia and delusion, which is really
a big indication of Alzheibers because they can get violent.
Speaker 4 (19:20):
Yeah, they can. At one point when we moved, actually
it was kind of caused by the move to the
first to the one story house. I have never, you know,
feelings about that either way. I'm not sure it was
the right thing. But he accused me of kidnapping.
Speaker 3 (19:37):
Him, right. He tried to hit he was going to
hit you.
Speaker 4 (19:39):
Yeah. I had to call my sons in. I had
to get help, you know. So there's that, there's depression,
emotional outbursts. There was a it's also time when they
forget how to do ordinary things like putting on their clothes.
I went into the bathroom. I remember he had taken
(20:00):
a shower and he had put his he was trying
to put his tank top undershirt on and he had
put his head through the armhole and he was stuck
and I unstuck him and we actually had a good
laugh about that. I mean, this is another thing you
have to kind of somehow keep your sense of humor,
(20:21):
keep your cheerfulness, I mean, without being phony. Just try
to stay upbeat if you can. It's not easy. Yeah,
And then you have the severe stage where the person
sleeps a lot, he has trouble balance and with walking
and falling. Edward and I used to have this little
(20:44):
routine because he was getting very shaky at that point.
This was in the fifth year. We stand up. He
would stand up by his wingback chair where he sat
a lot, and we would stand together in march in
place before he walked, so that he would gain some
sense of balance. But I wasn't always in the room
(21:05):
to be there with him, and he fell a couple
of times, yeah, without injury. But then finally he did
fall and injured himself and it provoked a stroke, and
that's when you come into the final severe stage, bedridden,
unable to speak, loss of appetite, and then you you
(21:27):
can call hospice, which I did. Is a wonderful organization.
Speaker 3 (21:32):
Very well. You know, it was interesting you call. I mean,
it's remarked six years is a long time because I
took care of my mother for a year and it
just about killed me. Okay, so and and and you know,
so hospice is important. And I think it's when you
finally called hospice. I was like, yay, she called hospice,
because I was like, you need hospice, and hospice is
(21:54):
for everybody listening and watching, it is so important to
reach out and ask for help because hospice does everything,
including giving you the caregiver time to take care of
yourself because often the caregiver's health and mental and physical
health is incredibly impacted, as as your as a spouse,
(22:17):
as a husband. I mean, I recently had some surgery Leilah,
and I was pretty helpless and David had just had
to help me dress. It's been pretty awful and I
can and I feel bad so reading this and just
having gone through it at a lesser stage, but still
(22:39):
feeling helpless. It is very hard to suddenly be go
from being a lover and a husband and my relationship
to suddenly you're helping your love when put their panties
pants on and get dressed, and cleaning up it and
trying to convince them they need depends and you're dealing
with a child. And I remember dealing with that with
my mother and that was very heart How did you
(23:02):
work that through in your head? Because I know it
was hard for you that way and also hard for
ad as the husband, caregiver, provider, strong man that he was.
Speaker 4 (23:12):
That's a very important point. Yes, I mean a woman
has a natural ability to take care of things. I
mean she is a caregiver to her husband, to her home,
her children if they haven't eed her pets. So Edward
actually appreciated my support as a wife and caregiver, but
(23:35):
it was when we got to the need for me
to take on additional roles, particularly that of parent. Yeah,
because I then we had a strain in the relationship.
Because you remember the person, even though they have Alzheimer's,
they're aware, they're sensitive, emotional sensitive, and he he was
(23:56):
sensitive to the fact that he was taking a subordinate
role as if he were a child, and he's not
a child, and I had to be very sensitive to that.
And in fact, there were times where I, as a mother,
had to lay out his clothes and help him dress.
(24:16):
But what I tried to do is step back and
let him do as much as he could by himself.
But if he couldn't button his shirt and he was
getting frustrated, I had to gently, you know, help him.
That was the way it was so with any caregiver
coming onto this role for the first time. Let me
(24:40):
just say that the most important thing is to remember
that the person with Alzheimer's is a person. There's still
a human being, and they have a long history. They're
a spiritual being. They are aware, even into the end,
they are or aware and that needs to be respected.
(25:01):
And I learned that it's tough.
Speaker 3 (25:04):
It's a tough thing because you are you do become
a parent, and suddenly conversations become all about did you
brush your teeth, did you put your clothes on? What
did you go to the bathroom where you put it back?
And you forget that there's that you really want to
have a normal conversation with person because you want them
to feel normal themselves.
Speaker 4 (25:25):
Yes, yeah, you want who they're not. They know, they
know they have it underneath all of that denial. They know,
but you still want to treat them and as normal
because they aren't some extent underneath a So what are.
Speaker 3 (25:41):
Some things that you did to try to Well, there's
two things. First, what did you do to try to
make things feel normal for both of you as over
these six years as things progressed? And what would you
advise anyone gives them, maybe give an example or two
things you did together to kind of strengthen you both emotionally.
Speaker 4 (26:06):
Well, emotionally, I mean that the spouse, and we're talking
about spouses here, but it can be of course anyone,
your mother, your daughter, whatever it is. But as the spouse,
the spouse with the Alzheimer's disease needs to feel needs
to feel loved and respected. So with for example, I
had to respect and accept the fact that Edward was
(26:30):
in denial in order to shield himself from the truth
which he knew until he was ready to accept it.
And until he was ready to accept it, I had
to accept and try to make to normalize our relationship
as much as possible. I had to learn patience empathy
(26:52):
forbearans when things got tough. I didn't always succeed, but
I did learn. For example, when he would get frustrated.
He would get frustrated doing simple handyman things that had
been his profession. So say he was securing a flower
box on the railing with new screws and he was
having trouble and I was standing by. He would turn
(27:14):
on me sometimes in his frustration and lash out and say,
you know, leave me alone. I this is what I do.
What I had to learn was to absorb those outbursts
and to stay quiet. And I was able to do
that when I was able to because I saw that
(27:35):
he was suffering, so my heart could reach out into
his pain and soothe him.
Speaker 3 (27:45):
You know, they're, like I call them, emotional landmines. You
don't know when they're going to happen, and sometimes you're
completely taken aback when they do.
Speaker 4 (27:53):
Right, Yes you are, I mean I I The worst
one was when he would would project his anger onto me,
and I had to be careful not to react in kind.
I didn't always succeed, but I but when I did,
it was because of two things. One, he was sick.
(28:17):
I wasn't. He was the one having difficulty controlling his emotions.
I had the freedom to control mine, and I had to.
I mean, my role was selfless service. Ego had to
take a back seat. I knew that. And the second
one was to remind him and myself that we are
(28:40):
not the body. We have a body, we're spiritual beings,
embodied souls. And when I lost my bearings, he reminded me.
Speaker 3 (28:50):
Well, you drew a lot on your spirituality. You both
are very you both meditate, you both come from a
point of you know, because of philosoph and spirituality. How
did that How did you work that into a practice
to keep you both stable and bonded and also talk
(29:13):
about things like art and music, which was very therapeutic.
Speaker 4 (29:17):
Okay, sure, well. The practice of meditation remained steady for
the six years, even though sometimes he would just sit
and I know he wasn't really meditating because he would
open his eyes sometimes and say where are we or
are do you want me to take the garbage out?
Or something irrelevant. But in the evenings, because he slept
(29:40):
so late in the morning, we would sit together and meditate.
We would sit on the couch with our bodies touching,
and touch becomes an extremely important thing for somebody with
Alzheimer's because the tactle connection tells the person that you
love them. It's very important support. And then, interestingly enough,
(30:01):
and this was in the last year, there was a
day long meditation intensive offered at an ashram near us,
and I didn't know if he was up to it,
but I decided to ask him, and I was surprised
by his answer. He said to me, of course I
want to go. I'm a spiritual being, so you know,
(30:27):
that really moved me. And we did go, and he
was able to last through it, even though he dozed
off most time. As far as art and music, you know,
these are wonderful ways to nourish the soul of the
person with Alzheimer's. I mean on the book cover, for example,
of my book is one of his Japanese brush paintings.
Speaker 3 (30:50):
Beautiful, isn't it? I mean beautiful?
Speaker 4 (30:53):
Yeah, And his artistic abilities were really awakened in the
art classes he took when he was when he was sick.
I find that spiritual practices that the person gravitates too,
because not everybody has the same spiritual inclination and creative
(31:13):
creative arts are the two ways that you can nurse
the soul. Music, for example, did you I wasn't aware
of this, but music activates more parts of the brain
than any other stimulant. Interesting, it's human, it's uniquely human,
hardwired along with language in our brains. And in the book,
(31:37):
I talk about the work of Dan Cohen, a social
worker who introduced music therapy into nursing home where there
were Alzheimer's patients in advanced stages. And he found that
when he introduced that personal musical favorite for that particular person,
(31:59):
that person who is like in communicato, would wake up,
light up, move his body to the music, to the rhythm,
and then he'd want to talk about all the stories
of his youth when he was enjoying that music with
other people. So there's a lot there buried in the
(32:19):
person that can be brought out through music and art.
Speaker 3 (32:23):
I couldn't read more. It's also a very important cancer treatment.
There's a whole music and art therapy. It's across the
board anyone who's dealing with a major illness or.
Speaker 4 (32:35):
Middle illness and of life.
Speaker 3 (32:37):
Music is so important. When my mother was dying, we
played music and it was over the Christmas holidays. We
watched She watched The Nutcracker NonStop is an opera, and
I used to when I was going through chemotherapy during
my breast cancer treatment. I would go to the opera
mm hm and just sit and listen.
Speaker 4 (32:57):
Very healing, very soothing. We played music for when he
was dying. We played a certain Sanskrit chance because we
knew some of those, and also some monks singing chants.
So yeah, whatever the person loves is good to play. Yeah.
Speaker 3 (33:16):
I think also conversation. Another challenge many caregivers have is
they lose conversation because they're busy telling the loved one
what to do, or it becomes more commanding and demanding
versus conversation. Talk to me about how you nurtured the spirit,
because this is what a lot of the book is
about through through having conversations and reflection.
Speaker 4 (33:39):
Well. And I encouraged our grandsons and our sons, because
we have two sons and four grandsons, that when they
came to visit, I encouraged them to talk to your dad,
your granddad, ask some questions about about the theater, about philosophy,
you know, things that they knew that their dad loved exactly,
(34:01):
even talk to him about his Porsche that he had.
You know, find out the thing is that the person loves,
and then bring it out in conversation and you'd be
surprised at what they know and remember you know, and
then they get excited. That kind of joy and self esteem,
even if it's temporary, is delightful for them and satisfying.
Speaker 2 (34:24):
Yeah.
Speaker 3 (34:25):
I think too many people come in and they start
say how are you feeling, and what are you doing
and what do you need? And they focus on they
focus on the disease for the illness and not on
the person. And I remember I recorded conversations with my
mother and let her talk about her days of your
work as I was doing articles, and we ended up
doing a video. This is a great time to capture
(34:46):
your loved one on video doing or audio because obviously
when they're gone, they're no longer with you and you
can go back and watch this. Did you do any
of that?
Speaker 4 (34:57):
Oh, that's an interesting question. I'm just thinking now I
wish we had. Well, actually, we have a few videos
we do that my daughter in law took on her
phone and and that, and then we have also tapes
that actually Edward made of books that he he wanted
(35:21):
to record in his own voice, spiritual books, and I
got headphones for him and he would listen to those,
you know, his own voice speaking the spiritual message that
he loved so much. So there are different and now
with the technology, there's a lot we can do to Boston.
Speaker 3 (35:42):
Yeah, I would encourage anybody to get the voice and
images and record the conversations because when the person is
no longer with you, they can be invaluable for you
and your grand your children and grandchildren, and I think
that's really really important. One of the things that was interesting,
and this happened actually with my father and also my mother,
(36:05):
is as they're in that later stage, there's like this
miraculous comeback where they come back and you're like, are
they back? Are they? And that happened to you it
was Christmas. Talk about that episode because it was stunning
for everybody.
Speaker 4 (36:23):
Yes, I actually put that in the introduction to the
book because it was stunning and it shows that the
person is still there underneath everything. In this case, we
had invited his niece and her husband for Christmas and
we all were together in the house for a Christmas party,
(36:48):
and he was dozing off in the chair and this
was like, oh, this was almost to the end of
his life, and he was dozing off, and suddenly he
came into an erect posture and he began to conduct
a class in philosophy. Amazing, with all of the Socratic
(37:12):
question and answer. He was like he was normal, completely,
not only normal. It was brilliant. And everybody was just
stunned and standing there out of breath because we couldn't
believe that this lasted for about twenty minutes. Wow, it
(37:32):
was as if he was never sick. So that shows
you something, doesn't it. It shows that there's still the
capacities are there. They're just buried under loads of plaque
and dow tangles and stuff.
Speaker 3 (37:47):
It's really remarkable. It happened my father Lily called me.
I went home to say goodbye to him, and then
he called. He said, I'm doing your taxes. Oh God,
why did you take all the fire? And I was like,
but that was on. And right before my mother passed,
we actually did a video with her. Oh and she
basically her voice was strong. We had propped up in
(38:09):
bed an amazing forty five minute video. Literally two days
later she lost your voice. Wow, Wow, amazing, But so
I do believe I have not read the Alupa Kopler
Ross book, but I don't know what that phenomenon is.
But it's like that renewed life before you die phenomenon,
and I've heard about it over and over again.
Speaker 4 (38:30):
Well, yes, there's a lot of documentation about it, and
actually the Institute of Noetic Sciences, which was founded by
edgar Mitchell, the astronaut who had a transcendent experience in
outer space. Anyway, he established this institute. I would encourage
people to go online and look into it because they
(38:50):
study this very phenomenon.
Speaker 3 (38:55):
You know.
Speaker 4 (38:55):
Sometimes it's called paranormal because people can't understand it. How
can a person who's dying and like hours before he
dies and he has no brain tissue left, hardly any left,
wakes up and talks to you incredible? How do you
explain that it's it's.
Speaker 3 (39:15):
Like miraculous, but it's it's common and it's like wow,
and hopefully we did you. I just I thought that
was just a pin drop moment in the book. Thinking
about your family. So as you were flexed, how are
you dealing with your grief since it's been what two
years or three years now.
Speaker 4 (39:32):
It's almost three. It's going almost three.
Speaker 3 (39:35):
How have you been dealing with your grief since his passing?
Speaker 4 (39:40):
Well, my family and my sons and their wives and
four grandsons who were supportive during the illness and after
he passed and they still are. After the funeral, we
gathered together and spread his ashes under two young peach trees.
We sat amazing grace and said prayers and then shared memories,
(40:05):
and that was very fortifying for myself. I I it
was funny. I couldn't grieve in tears for maybe three
weeks to a month, and then suddenly something triggered it
and I cried for three days. And so you have
to kind of give time for the healing of the wound.
(40:27):
And then I kept busy. I started teaching lifelong Learning
center courses and lifelong lifelong learning campuses and I still
am doing that. And I wrote this book because this
book is a cathartic release. It was also a way
(40:49):
for me to share what I learned with fellow caregivers.
Speaker 3 (40:56):
So and in summering summarizing it up, and let's put
the book back on the screen. Wine, what are some takeaways?
What do you want people who read My Years as
an Alzheid caregiver, and the underline is transcending loss by
nurturing spirit. What do you want people to take Readers
to take away from this, and particularly caregivers.
Speaker 4 (41:18):
I would say to remember that as they're caring for
this person, that the person is a human being. Yes,
And to draw out as much as you can from
that person's life, to explore it with him, to uncover talents,
and to remember that the person is a spiritual being
(41:41):
and that you're there to serve them selflessly. There's a
wonderful short poem by Rabindernath to Gore, the Indian poet,
If I could just recite, it's very short, Yes, of course,
about service. He says, I slept and dreamt that life
was joy. I awoke and saw that life was service.
(42:07):
I acted and behold, service was joy.
Speaker 3 (42:14):
Beautiful. Yeah, and that's really you know, the caregiver role
is a very many people think it's an honored role.
It's a special role, you know. I mean sometimes you
just think it's torture, but it's you know, many people
said to me, you were so lucky you were able
to take care of your mother or in your case,
(42:36):
and you may not feel it all the time, but
but but the reality is it's it's it's a gift
to be able to do that. Many people don't have
that gift because they lose a love one suddenly, and
that's another tragic loss. That's even completely different because at
least you have time as a caregiver to prepare yourself
mentally for the impending loss. It's it feels like a
(42:59):
long timeunnel dark. For me, it felt like a long
dark tunnel waiting for the crash. You just have to
work it through. But but you know you were able
to spend these amazing six years with him to help
him transition his life.
Speaker 4 (43:14):
Yes, it is an honor, it really is, even though,
as you say, it's not always easy at all and
you don't always succeed at it. But but that's that's
your role and you're lucky to have it.
Speaker 3 (43:26):
And you know, for everybody watching, you know, it is
an inevitable part of your life that at some point
someone you love is going to need to be cared for.
And you know, many people I'm not I was never
a parent, so I don't know what it's like to
care for a child, a baby and you know that transition,
(43:48):
but you know it's it's basically your role becomes that
again but in a different way. Yes, and you just again,
I think the underscore it's about realizing this person is
a person, they have a spirit, they're an adult. You
have to treat them as an adult. They had a
most likely an amazing life, and you have to respect
(44:11):
and honor that, even if they're not this person they
used to be.
Speaker 4 (44:16):
Exactly that's well said, yes.
Speaker 3 (44:18):
Yeah, yeah, And how are you doing now spiritually and
as you reflect back on this, because I know there
are triggers and for everybody watching, listen, Lilah's right, and
I'll echo, the crying is not immediate. There's usually something
down the road unexpectedly and the trigger hits and you
(44:40):
just become waterworks.
Speaker 4 (44:41):
Exactly exactly.
Speaker 3 (44:43):
It's happened to me too.
Speaker 4 (44:45):
Well, Oh good, I'm glad I'm not the only one.
Speaker 3 (44:47):
Oh no, it happened to be in the middle of
Commander's Palace anniversary lunch with David and I remember at
our wedding and my parents. All of a sudden, I
just be I don't even remember the lunch. I didn't
have a couple of twenty five cent mark TVs didn't help,
but I was a puddle.
Speaker 4 (45:03):
Yeah, yeah, I mean holidays can be hard. I mean
Thanksgiving after he passed. The first Thanksgiving, we were all tearing,
you know, even my son who was who was conducting
the Thanksgiving dinner and prayer, and suddenly he just couldn't,
couldn't do it anymore.
Speaker 3 (45:20):
You know, there's the empty chair at the table, and
that is there's the empty chair exactly, That's what it is.
Speaker 4 (45:25):
So you know, but you go on with your life
and I've I continue to meditate, and I'm reading some
of the books that he used to read and that
kind of thing. You know, yeah, he.
Speaker 3 (45:39):
Still gets good. You know, you're with him in spirit,
and you're you've got these beautiful brush drawings and all
the happy memories and the tapes. So yes, exactly, and
you traveled so much. You had a very rich life together.
And I think that in parting, I think what's important
is you know, whoever you're with is your soulmates. Yes,
you know, try to spend the best of your life,
(46:00):
life the best years of life, doing things you really
enjoy and not saying, oh, let's wait, just do it
because you don't know when that opportunity may not be there.
Speaker 4 (46:09):
Exactly. That's very good advice for sure.
Speaker 3 (46:11):
Yeah, and you know, less complaining and criticizing and more
just saying let's go out and have a good time.
Speaker 4 (46:18):
Exactly. Good.
Speaker 3 (46:19):
Yeah, it's great. Well, I you know, Leila, it's been
really great to see you. This was a really amazing book.
Like I said, I had to read it slowly and
put it down because it hit home and a lot
of parts. Even though my experience was losing a mother
who I think had some dementia, we no never know
because she never went to the doctor, but it hit
(46:40):
home and I have so many friends going through this.
So for everyone watching and listening again, the book is
my years as an Alzheimer's caregiver, transcending loss by nurturing spirit.
And yes, the Alzheimer's Foundation is a wonderful source. I
think I have it a you know, a AFDN dot
(47:01):
org is what I have. There are resources out there,
so you know, don't try to be a hero alone.
Bring people in to help you.
Speaker 4 (47:10):
Exactly. Thank you, Melanie, it's been great with you.
Speaker 3 (47:14):
It's been great seeing you. I hope that we get
to go back up to the Hudson Valley sometime and
a time up there. We do miss it. We love
where we are, but we love where we were as well,
every stage, and I wish you all the best with
life moving forward.
Speaker 4 (47:32):
Thank you, Same to you. Melanie.
Speaker 3 (47:34):
So you've been listening to Fearless Fabulous You, I'm Melanie Young.
The show will be available on over sixty five podcast
channels to listen on demand. Please listen and share it
with someone who will benefit from listening, and you can
also see it on YouTube at Melanie Young my channel.
Always you have choices in life on what you want
(47:54):
to do and who you want to spend your time with,
and how you want to be spending your time doing it.
I always say, choose to live life on your terms
and not on terms set by other people, and always
choose to live fearlessly and fabulously. Thank you,
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Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.