May 13, 2025 • 23 mins
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Grief doesn't wait for goodbye. It weaves through every moment of the dementia caregiving journey, creating a complex emotional landscape that few discuss openly.
When your loved one sits across from you—looking the same but fundamentally changed—you experience what experts call "anticipatory grief." You mourn what's already lost while simultaneously dreading future losses. The shopping trips you can no longer take together. The recipes they once taught you but now cannot remember. The phone calls that might someday stop coming.
This episode explores the profound reality that dementia creates two different people: who they were before diagnosis and who they are now. We delve into the heartbreaking contradiction of seeing someone physically present yet cognitively altered, and how caregivers must navigate this strange in-between space. The conversation touches on role reversal, dignity preservation, and finding moments to acknowledge your grief even while actively caregiving.
Whether you're currently caring for someone with dementia or supporting someone who is, this candid discussion offers validation and gentle guidance. The emotional weight of watching someone you love gradually change is immense, yet understanding that grief accompanies every stage of caregiving can help you be kinder to yourself throughout the journey.
Grab your beverage of choice—coffee, tea, or perhaps wine on the difficult days—and join us at Patty's Place, where difficult conversations happen with compassion and no one needs to face these challenges alone. Share your own experiences with anticipatory grief or connect with others walking a similar path by reaching out through our website or social media channels.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:11):
Welcome to Patty's Place, a place where we will
talk about grief, dementia andcaregiving.
I'm your host, lisa, so grab acup of tea, a cup of coffee or,
if you're really having a roughday, a glass of wine and let's
dive into these difficult topicsof time.
Today, I thought we might talkabout grief and caregiving, you
(00:31):
know, because we always tend tothink that grief is just what
happens after, but really griefis what happens before, during
and after, especially withdementia.
We go through grief in manydifferent ways with it, but we
do go through it as we arecaregiving for our loved one
(00:56):
with it.
I think probably the first onethat we go through is what's
called anticipatory grief,that's, I mean, basically what
it is is that we know this isnot going to end good.
You know, we know what thefinal outcome of it is, and so
we anticipate these things.
We also know that the person'snever going to be the same as
(01:22):
before this illness.
After this illness even if itisn't dementia, you know, if
it's a different type of seriousillness we know that they're
never going to quite be the same.
And so you anticipate thatgrief that you know that you're
going to feel, but you're alsofeeling it.
In that moment.
(01:42):
You think about all the thingsthat you used to be able to do
and now you can't Like somethingas simple as with my mom.
Her and I used to.
We would shop all the time andI think about that and it's it
was a loss even when she wasstill alive, because I couldn't
(02:02):
take her shopping anymore.
The last time her and I wentshopping, usually her and I
would go to the store and wewould usually separate and she'd
go look for things for herselfand I would look for me.
But the last time we went I wesaid we were going to go.
You know she'd go look for her.
I turned around and there shewas and I realized that she
(02:23):
needed to know where I wasbecause she was confused and she
didn't know where she was.
So I think about that all thetime when we did.
You know that last time that wewent shopping and I didn't
realize how much I miss beingthere with her and shopping and
what a good time we had andtalking and everything.
(02:45):
So when you're going through thecaregiving, you do anticipate
you know that at some point it'sgoing to be the end and you
also grieve not only that personbut in a way, you grieve the
purpose that you have whileyou're caregiving, because
caregiving becomes your life,gets centered around caregiving.
(03:08):
For me, my weekends are theones that are so hard, because I
used to always spend so much ofmy weekends with my mom with it
, and it's also hard.
That grief that you're goingthrough during caregiving is you
have to begin to accept thatthis person is different,
(03:32):
especially when you're dealingwith dementia.
With dementia, it is that thereare two different people.
They're the person that theywere before they got dementia
and then they're the person thatthey are with dementia.
And it's so hard because youkeep thinking about how they
(03:52):
were before and you see whatthey can no longer do, what they
can no longer handle, and youhave to accept that you have to
deal with them in a differentway.
And yet you're looking at thisperson and you're like but she's
still my mom.
I see her and I think about herand she's my mom and I still
(04:19):
want to go to her.
I still want that comfort.
I still want her to tell meit'll be okay.
And yet there were times whenshe would say those things to me
.
She would say it'll be okay, orshe'd be like are you okay?
You know, and she still knewsomething might not be right.
I really do believe and this isjust my experience but I really
(04:44):
do believe.
Even when dementia patientsdon't know you like they can't
tell you by name, they, you know.
My mom didn't know I was herdaughter anymore.
She thought I was just thisnice girl.
I really do believe, though,deep down inside she still knew
(05:05):
me.
She still knew I was somebodyshe could trust, somebody that
she was close to with it, eventhough she didn't know my name.
It was the same thing with mydad she didn't know his name
anymore and she kept looking forhim.
With my dad, she didn't knowhis name anymore and she kept
(05:25):
looking for him when he wasyounger.
But she knew, she felt safe,she knew that we were somebody
that she could trust, eventhough she didn't really know
who we were with it.
And it's so hard, as you'retrying to care, give and, and
you realize the roles change andyou have to almost you do.
You have to parent them.
(05:46):
If you're dealing with yourparents with it, you have to
take care of her, you know, likeI had to.
You know we would do her ournails together.
I'd be like mom, let me cutyour nails and stuff where she
used to do that when I waslittle, or let me do your hair
for as long as she would.
And another example of my mom wehad a phone for her and it was
(06:09):
a very, very simple phone and Ihad dialed in or programmed all
the numbers that she would need.
You know who she could call andshe would sometimes call I'm
not even exaggerating 30 times aday and it would be a lot.
You know, my phone would ringall the time, and not just me.
She would do that to my dad andthat.
(06:29):
And people would always say youknow, you don't have to answer
the phone every time she calls.
And for the most part I would.
You know, obviously, if I wasat work and I was in a meeting
or something and I, I couldn'tanswer, but in the back of my
mind I always answered, evenwhen it was hard and it was
(06:49):
rough and she was upset or I hadto calm her down because I knew
in the back of my mind therewas going to come a night, come
a day where she wasn't going tobe able to use the phone anymore
and I was going to miss thosecalls.
So that's a good example ofanticipatory grief.
(07:10):
And the day did come when shecouldn't use the phone anymore,
and I do miss seeing, you know,her name pop up on my phone.
Luckily, I, for some reason, Ijust had a feeling that I should
save a couple of her voicemails, because she didn't leave
voicemails very often, so atleast I still have her voice
(07:34):
that I saved.
So those are things too, withthe anticipatory grief as you're
going through in yourcaregiving, you think about the
things that you have lost andthe things that you know you're
going to lose with it.
And I also thought about thethings that she had lost as she
(07:55):
was going through it, the thingsthat she would not have wanted
to be like.
And it's so hard because it wasso not her, but yet it was her.
As I looked at her, you know,and I knew yeah, you know, there
is no cure for dementia.
So I thought about things ofwhat I would miss when she
(08:18):
wasn't there anymore.
And that was hard too, becauseI was trying to be in that
moment with her.
And I think that we feel thatway because, as we're trying to
be in that moment and we'retrying to take care of our loved
one and we're trying to be inthat moment and we're trying to
take care of our loved one andwe're trying to do what's right
and we're trying to figure outdoctors and medicines and what
(08:41):
do we do?
We're also grieving what was inthat moment.
As we're trying to take care ofthat person, we're grieving
those little things like beingable to pick up the phone and
just talk and be like hey, didyou see this TV show that was on
?
Or just have a cup of tea withmy mom, you know?
(09:01):
Or talk about whatever She'd belike.
Oh, let me tell you whathappened today, you know.
Or she'd come over and she'dshow me how to do something.
When I would come over by my mom, sometimes there was always
this one recipe.
My mom was a really good cookand but as she got older she
decided that she wasn't going to.
If the recipe was too long, shewasn't going to do it anymore.
(09:25):
So if it was like over fiveingredients, she said forget it,
and she didn't like to rollthings out.
So she ended up giving me herrolling pin.
But I would come over andperiodically she there was this
recipe she wanted to make.
It was for a meatball pie, butshe would always wait for me
because she's like you roll outthe dough and we would make it.
And I miss those things.
(09:46):
You know, my mom taught me howto bake and she taught me how to
cook, and I miss being able togo, you know, over to her and
share recipes and things likethat.
And as I took care of her, Icould see that was something she
could no longer do.
When she lived with me for awhile, I had to take all of the
knobs off the stove because thatwould have put her in danger
(10:09):
with it.
So you grieve what was how theywere before?
And you realize they're nevergoing to be that way again and
it's a way of life, arelationship.
And you're grieving as you'relooking at them and they're
still alive and you think, howcan I be grieving?
But you are because you'rethinking about what you lost and
what will never be again andwhat is gone forever, what you
(10:32):
lost and what will never beagain and what is gone forever.
And you're also grievingknowing that at some point this
person won't be here anymore.
And then you think, oh, that'sterrible, I shouldn't be
thinking those things.
But you know, especially withdementia, that there is no way
out.
You know it's only going to getworse depending on where
(10:55):
they're at and as they progresson the dementia.
And it's hard because no twopeople follow the same
progression with dementia.
Yes, there are different stagesand there are different
timelines.
Well, it's not even timelines.
There's different things, thatsymptoms or signs.
(11:15):
I guess you know that people gothrough, but everybody goes
through it at a different rate.
So you really don't haveanything.
So you're feeling very lost inthis maze because you don't know
what's coming next with it.
And you think about how thisperson was and then how they are
(11:36):
now and you're trying to figureout how do you do this, how do
you work through all this?
And you're trying to put thatperson first and yet you're
grieving what you're losing andwhat used to be, especially if
that person was like my mom.
She was my person, she wouldhave been the one I would have
(11:58):
went to to be like how do I getthrough this?
And there she was.
And so you think about allthese different things, all
these silly things.
As you're taking care of yourloved one, you think about what
you're going to lose what youalready lost and you wonder just
(12:19):
how, how do I get through allthis?
Because it's hard, it's reallyhard and I never thought about
it as anticipatory grief, butthat's what it is.
You're grieving what you knowyou're going to lose, but you're
also grieving what you alreadylost and what you're losing in
(12:41):
that moment.
You know, and it's so hard withdementia because you look at
the person and, as I said, theylook the same but they're not
the same.
So you grieve for that personas they're still alive, because
you think about, maybe, howalive they were or how funny
(13:03):
they were or the differentthings they used to do, and they
can no longer do it, whetherit's physically or mentally
longer do it, whether it'sphysically or mentally.
My mom was unusual because shewas highly mobile.
For a severe stage of dementiathat she was in, she was still
very mobile and that was highlyunusual.
(13:24):
A lot of times the physicalsymptoms may come into play
where they have trouble walkingor things like that.
With my mom that didn't happentill the end, which was highly
unusual for her.
But there were different thingsthat I know she never would
have wanted to be, you know,when she lost control, you know,
(13:45):
with incontinence and thingslike that.
My mom would never have wantedto be like that.
I mean, nobody does, but thosewere things that that was
something that would hurt.
Every time I would see that orthat we'd have to, I'd have to
try to get her to change herpants, you know, cause there was
a stain on them.
It's just.
It would break my heart becausethat's just not my mom.
(14:08):
And my mom would say things tome like, well, who cares, don't
look, stain on the pants.
I'd be like, but, mom, you know, we got to change your pants
and she'd be like so what?
Oh, don't look, or stop lookingat it, or who cares?
That's what she'd say and itwas so not like my mom, you know
.
And it would break my heartbecause I sometimes couldn't get
her to change and then I'd haveto ask the caregivers to help
(14:32):
me and I would be like that isso not my mom, you know.
Or I couldn't get her to changeclothes sometimes with it, and
it would.
You know, I'd feel like sohelpless that I couldn't help
her and I knew this wasn't whoshe was.
But yet this is who was theperson that was in front of me
(14:54):
now, and it's so hard becauseyou just think about who they
are as a person and who they arenow, and then you think about
how the illness has robbed theperson of so much and yet you
still want to give them dignity,you still want to treat them
with respect because you still Imean, you love them, you know.
(15:18):
And it's just hard becausethere's all these emotions and
maybe you're angry which is partof grief as well too and maybe
you come home and you cry youreyes out because you're like how
can this be and all of it'sokay, like how can this be and
all of it's okay.
It really is.
You have to get those feelingsout.
You have to get the anger outand the crying, the sadness,
(15:42):
whatever it is, so that you cankind of take care of yourself
and acknowledge that, yes, I amgrieving.
You know, I grieved for my momway before she died, because I
saw things, even before we wereable to get her diagnosed, that
I knew were not.
They were not my mom.
So those are things that youhave to think about and things
(16:06):
that you feel, and I think it'simportant that you feel what you
feel in that moment and maybeyou can't express it when you're
with your loved one in thatmoment, but you have to give
yourself that moment, even ifit's just going in the bathroom
and crying or screaming.
You have to give yourself thatand acknowledge that you are
(16:27):
grieving, because dealing withdementia is very, very hard.
It is not an easy thing for theperson who has it and for the
person who's taking care of yourloved one with dementia.
It's hard and you grievebecause you see what they're
(16:47):
losing.
You can see it in everythingthat they do and it does make
you angry, it makes you want tofight.
But there's such.
There's nothing to fight withdementia.
You know there there is no cure.
There's nothing except all youcould do is try to give them the
(17:10):
best help that you can, makesure they're safe which is most
important and do the best youcan taking care of them.
You know it's hard because youknow sundowners comes around and
sometimes they get agitated andit's hard sometimes to calm
them down.
And it's okay, as you'regrieving through caregiving.
(17:32):
It's also okay.
You're going to make mistakeswe all do, you know.
So you have to be not so hardon yourself to know that it's
all right, but acknowledge thatyou are grieving even when
you're taking care of your lovedone.
It doesn't make the grief atthe end any easier, but you do
(17:56):
grieve while you're caregivingLike I said, especially with
dementia because you grieve forthe person who used to be and
the person who you're dealingwith and sometimes they are
completely different.
People Like you may findyourself saying I don't
recognize this person at all andthat's okay because they're not
(18:21):
the same, and that's okaybecause they're not the same.
And I think one of the bestthings you can do for yourself
as a caregiver is to findknowledge Like I said, the
Alzheimer's website is a reallygood website or to find other
people.
Support groups can help too, sothat you don't feel like you're
(18:42):
crazy and you're alone becauseit's hard.
Support groups can help too, sothat you don't feel like you're
crazy and you're alone Becauseit's hard.
Caring for a loved one withdementia is hard and you do
grieve.
You grieve all the way throughthe caregiving process.
You don't just grieve at thevery end and it's really hard
(19:05):
accepting that this person is nolonger who they used to be.
And yet you know deep downinside there are moments that
they are still there and I dothink that they are still in
there.
It just gets sometimes harderand harder to find them and it's
hard.
If some days you don't reachthem, it is, it's okay, you know
, it just is, and sounderstanding grief is one of
(19:29):
the ways you can try to be alittle bit kinder to yourself as
you're going through thisprocess and we'll talk more
about grief and caregiving, andcaregiving and dementia as we
continue on here at Patty'sPlace.
Hopefully, like I said, youfind this a place of comfort for
yourself, a place that you knowat least you don't feel like
(19:51):
you're alone for it, and that'swhat my mom would always want.
She'd want people to feelcomforted and not feel alone.
So I hope you were able to geta nice cup of tea, cup of coffee
or some wine, and please joinus next time right here on
Patty's Place.
Yeah, yeah, yeah, no-transcript.
Welcome to Patty's Place, a place where we will
talk about grief, dementia andcaregiving.
I'm your host, lisa, so grab acup of tea, a cup of coffee or,
if you're really having a roughday, a glass of wine and let's
dive into these difficult topicsof time.
Today, I thought we might talkabout grief and caregiving, you
(00:31):
know, because we always tend tothink that grief is just what
happens after, but really griefis what happens before, during
and after, especially withdementia.
We go through grief in manydifferent ways with it, but we
do go through it as we arecaregiving for our loved one
(00:56):
with it.
I think probably the first onethat we go through is what's
called anticipatory grief,that's, I mean, basically what
it is is that we know this isnot going to end good.
You know, we know what thefinal outcome of it is, and so
we anticipate these things.
We also know that the person'snever going to be the same as
(01:22):
before this illness.
After this illness even if itisn't dementia, you know, if
it's a different type of seriousillness we know that they're
never going to quite be the same.
And so you anticipate thatgrief that you know that you're
going to feel, but you're alsofeeling it.
In that moment.
(01:42):
You think about all the thingsthat you used to be able to do
and now you can't Like somethingas simple as with my mom.
Her and I used to.
We would shop all the time andI think about that and it's it
was a loss even when she wasstill alive, because I couldn't
(02:02):
take her shopping anymore.
The last time her and I wentshopping, usually her and I
would go to the store and wewould usually separate and she'd
go look for things for herselfand I would look for me.
But the last time we went I wesaid we were going to go.
You know she'd go look for her.
I turned around and there shewas and I realized that she
(02:23):
needed to know where I wasbecause she was confused and she
didn't know where she was.
So I think about that all thetime when we did.
You know that last time that wewent shopping and I didn't
realize how much I miss beingthere with her and shopping and
what a good time we had andtalking and everything.
(02:45):
So when you're going through thecaregiving, you do anticipate
you know that at some point it'sgoing to be the end and you
also grieve not only that personbut in a way, you grieve the
purpose that you have whileyou're caregiving, because
caregiving becomes your life,gets centered around caregiving.
(03:08):
For me, my weekends are theones that are so hard, because I
used to always spend so much ofmy weekends with my mom with it
, and it's also hard.
That grief that you're goingthrough during caregiving is you
have to begin to accept thatthis person is different,
(03:32):
especially when you're dealingwith dementia.
With dementia, it is that thereare two different people.
They're the person that theywere before they got dementia
and then they're the person thatthey are with dementia.
And it's so hard because youkeep thinking about how they
(03:52):
were before and you see whatthey can no longer do, what they
can no longer handle, and youhave to accept that you have to
deal with them in a differentway.
And yet you're looking at thisperson and you're like but she's
still my mom.
I see her and I think about herand she's my mom and I still
(04:19):
want to go to her.
I still want that comfort.
I still want her to tell meit'll be okay.
And yet there were times whenshe would say those things to me
.
She would say it'll be okay, orshe'd be like are you okay?
You know, and she still knewsomething might not be right.
I really do believe and this isjust my experience but I really
(04:44):
do believe.
Even when dementia patientsdon't know you like they can't
tell you by name, they, you know.
My mom didn't know I was herdaughter anymore.
She thought I was just thisnice girl.
I really do believe, though,deep down inside she still knew
(05:05):
me.
She still knew I was somebodyshe could trust, somebody that
she was close to with it, eventhough she didn't know my name.
It was the same thing with mydad she didn't know his name
anymore and she kept looking forhim.
With my dad, she didn't knowhis name anymore and she kept
(05:25):
looking for him when he wasyounger.
But she knew, she felt safe,she knew that we were somebody
that she could trust, eventhough she didn't really know
who we were with it.
And it's so hard, as you'retrying to care, give and, and
you realize the roles change andyou have to almost you do.
You have to parent them.
(05:46):
If you're dealing with yourparents with it, you have to
take care of her, you know, likeI had to.
You know we would do her ournails together.
I'd be like mom, let me cutyour nails and stuff where she
used to do that when I waslittle, or let me do your hair
for as long as she would.
And another example of my mom wehad a phone for her and it was
(06:09):
a very, very simple phone and Ihad dialed in or programmed all
the numbers that she would need.
You know who she could call andshe would sometimes call I'm
not even exaggerating 30 times aday and it would be a lot.
You know, my phone would ringall the time, and not just me.
She would do that to my dad andthat.
(06:29):
And people would always say youknow, you don't have to answer
the phone every time she calls.
And for the most part I would.
You know, obviously, if I wasat work and I was in a meeting
or something and I, I couldn'tanswer, but in the back of my
mind I always answered, evenwhen it was hard and it was
(06:49):
rough and she was upset or I hadto calm her down because I knew
in the back of my mind therewas going to come a night, come
a day where she wasn't going tobe able to use the phone anymore
and I was going to miss thosecalls.
So that's a good example ofanticipatory grief.
(07:10):
And the day did come when shecouldn't use the phone anymore,
and I do miss seeing, you know,her name pop up on my phone.
Luckily, I, for some reason, Ijust had a feeling that I should
save a couple of her voicemails, because she didn't leave
voicemails very often, so atleast I still have her voice
(07:34):
that I saved.
So those are things too, withthe anticipatory grief as you're
going through in yourcaregiving, you think about the
things that you have lost andthe things that you know you're
going to lose with it.
And I also thought about thethings that she had lost as she
(07:55):
was going through it, the thingsthat she would not have wanted
to be like.
And it's so hard because it wasso not her, but yet it was her.
As I looked at her, you know,and I knew yeah, you know, there
is no cure for dementia.
So I thought about things ofwhat I would miss when she
(08:18):
wasn't there anymore.
And that was hard too, becauseI was trying to be in that
moment with her.
And I think that we feel thatway because, as we're trying to
be in that moment and we'retrying to take care of our loved
one and we're trying to be inthat moment and we're trying to
take care of our loved one andwe're trying to do what's right
and we're trying to figure outdoctors and medicines and what
(08:41):
do we do?
We're also grieving what was inthat moment.
As we're trying to take care ofthat person, we're grieving
those little things like beingable to pick up the phone and
just talk and be like hey, didyou see this TV show that was on
?
Or just have a cup of tea withmy mom, you know?
(09:01):
Or talk about whatever She'd belike.
Oh, let me tell you whathappened today, you know.
Or she'd come over and she'dshow me how to do something.
When I would come over by my mom, sometimes there was always
this one recipe.
My mom was a really good cookand but as she got older she
decided that she wasn't going to.
If the recipe was too long, shewasn't going to do it anymore.
(09:25):
So if it was like over fiveingredients, she said forget it,
and she didn't like to rollthings out.
So she ended up giving me herrolling pin.
But I would come over andperiodically she there was this
recipe she wanted to make.
It was for a meatball pie, butshe would always wait for me
because she's like you roll outthe dough and we would make it.
And I miss those things.
(09:46):
You know, my mom taught me howto bake and she taught me how to
cook, and I miss being able togo, you know, over to her and
share recipes and things likethat.
And as I took care of her, Icould see that was something she
could no longer do.
When she lived with me for awhile, I had to take all of the
knobs off the stove because thatwould have put her in danger
(10:09):
with it.
So you grieve what was how theywere before?
And you realize they're nevergoing to be that way again and
it's a way of life, arelationship.
And you're grieving as you'relooking at them and they're
still alive and you think, howcan I be grieving?
But you are because you'rethinking about what you lost and
what will never be again andwhat is gone forever, what you
(10:32):
lost and what will never beagain and what is gone forever.
And you're also grievingknowing that at some point this
person won't be here anymore.
And then you think, oh, that'sterrible, I shouldn't be
thinking those things.
But you know, especially withdementia, that there is no way
out.
You know it's only going to getworse depending on where
(10:55):
they're at and as they progresson the dementia.
And it's hard because no twopeople follow the same
progression with dementia.
Yes, there are different stagesand there are different
timelines.
Well, it's not even timelines.
There's different things, thatsymptoms or signs.
(11:15):
I guess you know that people gothrough, but everybody goes
through it at a different rate.
So you really don't haveanything.
So you're feeling very lost inthis maze because you don't know
what's coming next with it.
And you think about how thisperson was and then how they are
(11:36):
now and you're trying to figureout how do you do this, how do
you work through all this?
And you're trying to put thatperson first and yet you're
grieving what you're losing andwhat used to be, especially if
that person was like my mom.
She was my person, she wouldhave been the one I would have
(11:58):
went to to be like how do I getthrough this?
And there she was.
And so you think about allthese different things, all
these silly things.
As you're taking care of yourloved one, you think about what
you're going to lose what youalready lost and you wonder just
(12:19):
how, how do I get through allthis?
Because it's hard, it's reallyhard and I never thought about
it as anticipatory grief, butthat's what it is.
You're grieving what you knowyou're going to lose, but you're
also grieving what you alreadylost and what you're losing in
(12:41):
that moment.
You know, and it's so hard withdementia because you look at
the person and, as I said, theylook the same but they're not
the same.
So you grieve for that personas they're still alive, because
you think about, maybe, howalive they were or how funny
(13:03):
they were or the differentthings they used to do, and they
can no longer do it, whetherit's physically or mentally
longer do it, whether it'sphysically or mentally.
My mom was unusual because shewas highly mobile.
For a severe stage of dementiathat she was in, she was still
very mobile and that was highlyunusual.
(13:24):
A lot of times the physicalsymptoms may come into play
where they have trouble walkingor things like that.
With my mom that didn't happentill the end, which was highly
unusual for her.
But there were different thingsthat I know she never would
have wanted to be, you know,when she lost control, you know,
(13:45):
with incontinence and thingslike that.
My mom would never have wantedto be like that.
I mean, nobody does, but thosewere things that that was
something that would hurt.
Every time I would see that orthat we'd have to, I'd have to
try to get her to change herpants, you know, cause there was
a stain on them.
It's just.
It would break my heart becausethat's just not my mom.
(14:08):
And my mom would say things tome like, well, who cares, don't
look, stain on the pants.
I'd be like, but, mom, you know, we got to change your pants
and she'd be like so what?
Oh, don't look, or stop lookingat it, or who cares?
That's what she'd say and itwas so not like my mom, you know
.
And it would break my heartbecause I sometimes couldn't get
her to change and then I'd haveto ask the caregivers to help
(14:32):
me and I would be like that isso not my mom, you know.
Or I couldn't get her to changeclothes sometimes with it, and
it would.
You know, I'd feel like sohelpless that I couldn't help
her and I knew this wasn't whoshe was.
But yet this is who was theperson that was in front of me
(14:54):
now, and it's so hard becauseyou just think about who they
are as a person and who they arenow, and then you think about
how the illness has robbed theperson of so much and yet you
still want to give them dignity,you still want to treat them
with respect because you still Imean, you love them, you know.
(15:18):
And it's just hard becausethere's all these emotions and
maybe you're angry which is partof grief as well too and maybe
you come home and you cry youreyes out because you're like how
can this be and all of it'sokay, like how can this be and
all of it's okay.
It really is.
You have to get those feelingsout.
You have to get the anger outand the crying, the sadness,
(15:42):
whatever it is, so that you cankind of take care of yourself
and acknowledge that, yes, I amgrieving.
You know, I grieved for my momway before she died, because I
saw things, even before we wereable to get her diagnosed, that
I knew were not.
They were not my mom.
So those are things that youhave to think about and things
(16:06):
that you feel, and I think it'simportant that you feel what you
feel in that moment and maybeyou can't express it when you're
with your loved one in thatmoment, but you have to give
yourself that moment, even ifit's just going in the bathroom
and crying or screaming.
You have to give yourself thatand acknowledge that you are
(16:27):
grieving, because dealing withdementia is very, very hard.
It is not an easy thing for theperson who has it and for the
person who's taking care of yourloved one with dementia.
It's hard and you grievebecause you see what they're
(16:47):
losing.
You can see it in everythingthat they do and it does make
you angry, it makes you want tofight.
But there's such.
There's nothing to fight withdementia.
You know there there is no cure.
There's nothing except all youcould do is try to give them the
(17:10):
best help that you can, makesure they're safe which is most
important and do the best youcan taking care of them.
You know it's hard because youknow sundowners comes around and
sometimes they get agitated andit's hard sometimes to calm
them down.
And it's okay, as you'regrieving through caregiving.
(17:32):
It's also okay.
You're going to make mistakeswe all do, you know.
So you have to be not so hardon yourself to know that it's
all right, but acknowledge thatyou are grieving even when
you're taking care of your lovedone.
It doesn't make the grief atthe end any easier, but you do
(17:56):
grieve while you're caregivingLike I said, especially with
dementia because you grieve forthe person who used to be and
the person who you're dealingwith and sometimes they are
completely different.
People Like you may findyourself saying I don't
recognize this person at all andthat's okay because they're not
(18:21):
the same, and that's okaybecause they're not the same.
And I think one of the bestthings you can do for yourself
as a caregiver is to findknowledge Like I said, the
Alzheimer's website is a reallygood website or to find other
people.
Support groups can help too, sothat you don't feel like you're
(18:42):
crazy and you're alone becauseit's hard.
Support groups can help too, sothat you don't feel like you're
crazy and you're alone Becauseit's hard.
Caring for a loved one withdementia is hard and you do
grieve.
You grieve all the way throughthe caregiving process.
You don't just grieve at thevery end and it's really hard
(19:05):
accepting that this person is nolonger who they used to be.
And yet you know deep downinside there are moments that
they are still there and I dothink that they are still in
there.
It just gets sometimes harderand harder to find them and it's
hard.
If some days you don't reachthem, it is, it's okay, you know
, it just is, and sounderstanding grief is one of
(19:29):
the ways you can try to be alittle bit kinder to yourself as
you're going through thisprocess and we'll talk more
about grief and caregiving, andcaregiving and dementia as we
continue on here at Patty'sPlace.
Hopefully, like I said, youfind this a place of comfort for
yourself, a place that you knowat least you don't feel like
(19:51):
you're alone for it, and that'swhat my mom would always want.
She'd want people to feelcomforted and not feel alone.
So I hope you were able to geta nice cup of tea, cup of coffee
or some wine, and please joinus next time right here on
Patty's Place.
Yeah, yeah, yeah, no-transcript.
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