Welcome!

In this episode we speak again with Esther Greenhouse, but this time about her personal journey with her own mother. We explore relationship dynamics, living next door, vascular dementia, and much more.

Caveats:

• This is a judgement free zone
• There are no "shoulds" allowed, we live in curiosity
• Take what works well for you, leave the rest!
• This podcast is for informational purposes only; it is not intended as formal legal, financial or medical advice

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Rebecca

Disclaimer: The information presented on this podcast is solely for information purposes. We do not provide medical, legal, financial, or other professional advice through this podcast and we are not responsible for any errors or omissions. It is your responsibility to seek advice from a licensed professional. Any actions you take are done at your own risk.

. Thank you everybody for joining us for another episode of Real

Conversations About Aging Parents.

You will recognize today's guest from a previous episode that aired back in July.

We have Esther Greenhouse with us.

She did the episode on environmental gerontology.

Welcome Esther.

Thank you for being here.

Thank you for having me back, Rebecca.

It's my pleasure.

You didn't know this was going to be a twofer, right?

When I told you I needed you to come on the podcast.

Oh, well, but we had such a good time and there's so much to talk about

because issues related to caregiving are both personal and professional for me.

So I think two podcasts makes a lot of sense.

Yeah.

And it always adds some depth to people when they're professionally involved

with the kind of things you're doing.

And I always think it's, it's very interesting to peek behind the

curtain and try to understand some of the dynamics that set you up

for being interested in this topic.

So with that said, I know our guests might be familiar with you from the

other episode, but could you just give us the thumbnail sketch of your,

your current life right now, anything you're into hobbies, things like that.

So I am an environmental gerontologist.

I specialize in how the built environment affects the functioning

and well being of older adults.

And essentially my mission is to change the way we design and build.

so that we respect the lifespan and we enable people to thrive

to the end of their lives.

Personally I am an empty nester.

My son graduated from college a year ago and is living on his own.

Up until a year ago, I was the primary caregiver for my mom on a daily basis.

It was hands on.

And then our family and my mom relocated, and my mom moved to assisted

living and then my role shifted.

I was still the primary caregiver in the sense of being responsible for

her and being her advocate taking her to doctor's visits, but I was not

the primary caregiver any longer in terms of providing care on a daily

basis or administering her meds.

And and then February 1st of this year, my mom passed away and the

past few months I've been trying to readjust to no longer having that role.

Thank you.

And I want to make sure I come back to that adjustment.

I think it's really interesting to speak to you while you're

still in that adjustment period.

And I think that is a, a really complicated time to go back to

normal life, but then know what you, what you just went through.

So one of the things I'd like to do is if we were to develop a

timeline, how far do we need to trace back when you first realized

your mom may need some extra help?

Well, it, it probably goes back to childhood because My mother's mother

lived with us until I was about five.

And then due to the progression of rheumatoid arthritis and the negative

features of the home we were living in, for example, doorways that were

too narrow to allow my grandmother to, to, to use a walker in the house

my grandmother moved to a facility and that really shaped my mother.

My mother felt tremendous guilt over it.

And she every time she thought about her elderhood, she was terrified that

she would have to move into a facility.

And when I was 13, my father unexpectedly died of a massive heart attack.

And I really had to step into the role of assisting my mother at that point.

Even though I had an older sister, she was already out of the house

so I, I knew I would be the one to take care of my mom in the future.

And when so that's at 13, so you became probably an emotional support

if nothing else at a very young age.

When in your adulthood did you start to think that mom was going

to have some caregiving needs or that that was about to, to escalate?

What did that look like?

So I would say well first when my mom was

trying night,

I'm trying to do the math now and remember how old she was.

I think when my mom was around 67, she had a minor heart attack.

And I was the one who flew out to see her.

She was actually visiting a very dear family friend who

was like a relative to us.

And I stayed with her in the hospital and then I, I brought her home.

And after that, it was clear that her medical needs were

increasing and she was doing great.

She recovered from that heart attack very well.

She went to cardiac rehab but there were other chronic health conditions.

And so if she needed something like a colonoscopy or a cataract surgery, I came

down and I took her to those appointments.

And this is already where the.

Family dynamics start to impact caregiving, which we can try to look at

caregiving as something very practical.

And it's, it's not for example, my sister is six years older and she

lived 45 minutes to an hour away from my mom and I lived five hours away.

And this is what part of the country?

In New York State.

Okay.

So my mom and my sister were both on Long Island, and I was

in upstate New York in Ithaca.

There were a whole bunch of reasons why I was the one who came down.

First, it was that I didn't have children, and my sister did.

But the fact is that my mother always...

And you talk about emotional support.

Both my parents were sadly very wounded people.

They grew up in Hungary and Romania during the Great Depression.

And then during World War II, and then under Soviet occupation.

And they...

Literally walked across fields at night with soldiers and guards searching

for them to escape to freedom and came to this country with nothing but the

clothes on their backs and started over.

So, tremendous amount of trauma that was never processed.

And like so many people the way my parents dealt with it was by

drinking, you know, they drank alcohol to to try to sleep at night.

And in my mother's case with me Very early on, I would say when I was probably

three, four, five years old, she was turning to me for emotional support.

So that was the type of relationship.

So looking back, it really makes sense that I was the

one who became her caregiver.

Do you know why she turned to you at that age versus your sister, who would

have still been kind of like school age?

Is it receptivity?

Is it personality?

Is it, what dynamic can you point to?

That's, that's a really great question.

I don't know that we can put our fingers on things like that, but the way I

characterize it is that I really believe that I was given to my mother to Support

her, advocate for her take care of her, give her the best possible life.

I really think that that that was God's intention.

So where did that belief come from?

Trying to make sense of really trying situations.

So usually with beliefs, you either are handed a belief, like somebody says, this

is what daughters do, or this is what, you know, I'm going to, you're going

to inherit a belief from somebody else.

Or you have like a de novo belief that you just come up with

someday as a way to explain life.

So my, I guess this is a critical element I'm always interested in, a

lot of the beliefs and thoughts in our own head, we feel like, you know, we

we've developed them, but sometimes they're actually just inherited.

Yes.

And so I know you saw your grandmother be cared for by your mother.

But what's interesting, if we look at the siblings in the household, you

probably have developed a very different belief set or system than your sister.

Do you have any other thoughts on the origin of this belief that you

were put here to take care of her?

Well, one thing with my sister and I want to be clear, I'm not being critical of

my sister because we do what we can do.

And sometimes people.

make choices, and sometimes they do things by default.

And sometimes it seems like my sister's reaction to the family dynamics at

least between me, my mom and my sister has been avoidance, you know, and it's

very clear that my sister loves me and cares about my wellbeing and loved my

mother and cared about her wellbeing, but she, sometimes offered to help, and my

mother would say no, like, oh, well, you have to kids and, you know, don't, don't

take your time off to come and help me.

But somehow it was okay for me to try to modify my life because

when I, when I became a full time caregiver to my mom so when my mom

was around 80 and I was around 40.

My mom moved next door to us.

We designed and built a house to enable her to successfully age in

place, receive care at home if need be.

But you know, it was totally okay for my mom to ask me to change my.

Schedule with my work and try to juggle running my own firm and raising my son and

my responsibilities to take care of her.

Let, let's go back.

Oh, I'm sorry.

Go ahead.

Yeah, go ahead.

Go ahead.

I, I just wanted to make sure.

So we try to go back to that timeline.

So what year-ish doesn't have to be perfect.

Would the minor heart attack have happened?

So that would have been around 97.

Yeah, I was 27 and in grad school and my mom was 67.

And what year was your son born?

99.

Two years later.

Okay.

So that was a, so she had the heart attack and started having some needs.

And then a couple of years later you had your son.

Right.

And then you mentioned actually building the home and moving her closer to you.

So up until that point, y'all were still a five hour drive away.

Is that right?

Correct.

Okay.

Okay.

And then about what year did she move in with you or move in next to you guys?

It was, okay.

I think 2011 or 2012, something around then, and it was really

interesting because for several years before we had said to her.

You know, why don't you move up here?

We'll either build a house for you or we'll modify a house for you.

My husband was a custom home builder for 30 years and she really was in a

very lucky position to have a custom home builder son in law and a daughter

who was an expert in design for elders and We kept looking at places and she

didn't like them, or I think some of it, she wasn't ready to make the change,

you know, she was living alone, right?

She was living alone.

She had moved from my childhood home into an apartment in the same community.

And she really loved that community.

She felt...

Out of all the places that she lived in the U.

S.

that was really her home.

And...

But living there for almost 40 years, things change, you know, the community

changes, and a lot of her friends were a few years older, a few years younger,

and they were passing away, a few moved away but what finally made her

comfortable with moving was probably fate.

So my husband and I had been planning to build a new home for our family, and I

found a plot of land that had recently been subdivided into three building lots.

And we were buying one for ourselves, and we told my mom about the

others, and she said no thank you.

And then a few weeks later, I called her to have a visit, and we talked for

a long time about all kinds of things.

And just as I was about to hang up the phone, she said, I'm ready

to build a house next to you.

Because I fell and broke my wrist and she was really lucky.

It was a hairline fracture.

It was no big deal, but it was a wake up call.

And so that made the change.

Tell me the logistics of this, like who actually ended up

buying the lot and the house?

Like, how did you have that conversation?

What kind of resource sharing was there?

That's a big deal.

I mean, it's one thing to move somebody into your house for like a spare bedroom.

It's another thing to build a new building of its own single family home.

What did that look like?

So if I remember correctly, I think my husband's firm purchased

the entire parcel that was three building plots or lots.

And and then my mother purchased from the company.

The land and contracted to build the house.

Okay, good.

So you didn't have a big discussion about cost sharing with you and

your sister or anything like that.

So she had the resources to right to build.

That's great.

She had, she had the resources, you know, she was selling her apartment.

And she had other funds.

So she was, very fortunately, and you're absolutely right, not

everybody is in that situation, but she was financially independent.

So when you decided or the thought, I guess you already had this

thought growing up that you would eventually end up taking care of her.

But when you had this thought that you wanted her to move closer, what

percent was that you missed her, you wanted to spend more time with her,

and what percent was practicality that it was really difficult.

Being five hours away from somebody that you felt responsible for caring about.

That's a really good question.

I told you I'd ask you a really tough question.

It's a really tough question.

So,

you know, my dynamic with my mom was,

my mom was the kind of person really sadly that.

She viewed herself as a perpetual victim and a big part of the dynamic

of our relationship was that she would misinterpret things I would say

or do as being negative against her.

And the same went for other people.

And for as long as I can remember, whenever she would share a situation

with me and explain how she was snubbed.

By a friend or a cashier or a health care provider, whatever it was, whoever

it was, and I would say, Well, you know, maybe that's not what they meant,

because I always saw another possibility.

In a lot of cases, it didn't seem to me like they were doing anything offensive.

And whenever I did this, my mother would get angry.

And she would say, you're taking their side, you always take their side.

And

this is a really important issue to bring up because how

do you take care of somebody and make sacrifices in your own life?

And how do just somebody like that be comfortable in

the role of being dependent?

It really, really complicates.

caregiving from all angles.

So to get back to your question about what percentage was it that I mistermed,

we had a, we, we very, we were very clearly very fond of each other.

We loved each other.

We were very close, but it was a very difficult relationship.

There was often a lot of anger and tears.

And it, I realized.

You know, when you say with your question, how much of it was that you

missed your mom, I realized recently in speaking with a bereavement counselor

that I'm working with through hospice.

That I was always missing the relationship that I never had with my mom or that

I only had in, in bits and pieces.

And, you know, we were saying, my husband and I were saying for years,

move up here and be closer to us.

Not only can we help you, but you can be a part of our lives.

Your world is shrinking, your friends are dying or moving, and why don't you move

up and, and you can see us more often.

And when she moved up, I remember early on she was sitting in our living room.

I can actually picture the scene, and my husband said to her, Oh, you know,

you could come over dinner, for dinner, like, every Sunday, something like that.

And, and my mother said, no, I want my privacy.

I like to be alone.

And, but then what we were seeing were things like, if I, if I didn't go to

her house for two days, When I went, the greeting was, where have you been?

And that's when she lived next to you, right?

And that's when she lived next.

So you know, for me, in terms of how much of it was practicality,

a lot of it was practicality.

I mean, through my expertise.

And just being somebody who tends to be a planner, all I had to do was

look at my situation that my mother had with my grandmother and be like,

we have to be prepared for this.

. I think it was when I graduated undergraduate.

Because my mom was.

Around 62 or 63.

Then I was in my early twenties and I said to her, you know, I have

this expertise related to aging and I know the last resort is that you

that you go to move to a facility.

But why don't we talk about the different scenarios?

Why don't we plan for things?

And she put up her hand and she said.

I do not have one foot in the grave yet, and that was the end of the

discussion for almost 20 years.

How did she, you mentioned, you know, if you hadn't been over in a couple days

that she'd say, where have you been?

How would you characterize in general how she received your?

support, care, attention, time.

So we have a joke in our family about my mom.

My mom was born in mid June and so her astrological sign is Gemini and

we would say to her, Okay, mom, can you bring out the other twin who said

the exact opposite thing yesterday?

So, you know, my mom was really at her core, a very loving and

caring and appreciative person.

But I think because she was so wounded.

A lot of times she didn't know how to not come from a place

of defensiveness and pain.

So her reactions to being helped varied, you know, there, there were

quite a few times where she would say that how grateful she was to

me and my husband and, and my son.

For all that we did, but there was also a lot of resentment.

And I think some of the resentment is normal.

You know, how do you reconcile that throughout your life?

You're becoming more and more independent, and you have greater responsibilities

of people at work and in your personal life being dependent on you.

And then you start to move into a phase where not only does

that go away, but you shift.

To being dependent on other people again, it's not easy, right?

Right.

And, and you talked earlier about your sister.

How did that relationship change or did it once your mom

moved in or moved next to you?

I would say that it changed in, in that we saw less of my sister

because we didn't travel down to Long Island as much, or if we did, Okay.

We went to the part of Long Island where my husband's family was and not

where my sister was and my mother really stopped traveling because it

was really hard for her to sit in a car and get in and out of a car.

So, and the one way my sister supported me was through texting,

you know, she gave me a lot of emotional support through texting.

So I'm grateful for that.

And in terms of my mom, you know, my mom was really odd with my sister and my

sister would, there were periods where my sister would call her and my mom

would be like, I don't want to talk on the phone, you know, send me an email.

And then if my sister sent her an email, and it was only a few lines, my mom would

be upset that she didn't tell her more.

And so I, I think there were a lot of things going on.

I think there was like I said, Earlier, but not using the this terminology.

I definitely my mother had post traumatic stress disorder significantly.

I think she had significant periods of depression.

And at some point.

She was developing vascular dementia.

And I would say, also, throughout much of this, trying to remember

what year it was that she stuck, I would say in, like, 2014 or 15,

maybe, she finally stopped drinking.

So all of these issues really affected how she interacted with us.

And of course how we interacted with her.

It sounds like if you set out to not only have this master designed home and the

history of your grandmother going into a facility, there eventually came a day,

it sounds like you said about a year before she ended up passing away that

she did have to move into a facility.

Can you tell me about how that decision was made?

How she reacted to it?

What that looked like?

Yes, so In February of 2020, we looked at moving , my mom to assisted

living because my husband was just starting treatment for cancer.

And before we could have a serious discussion with my

mom, March 2020 came around and everything shut down due to COVID.

And

for me, it was very challenging because I had been looking at moving

my mom to assisted living because I thought, how can I do everything?

How can I?

Do my work.

I had two major projects at that time that were long term projects.

How can I care for my husband, we had no idea how well he was going

to do with the treatment, how much he was going to be affected.

And we you know, and there was my mom to take care of, and because of

COVID I had to let go the aide who was coming twice a week, who helped

me care for my mom because I was so afraid of her accidentally, you know,

unknowingly bringing COVID into the house and, Infecting my mom, and then

I, I didn't know how I would care for my mom because I couldn't go care for her

if my husband was immunocompromised and concerns about him also contracting it.

So, by the grace of God my son's college, like many closed.

At that time and he came home and he was an amazing help.

But and then fortunately my husband responded very well to treatment.

He did not have.

terrible side effects.

I mean, he was affected, but and then he was starting the road to recovery.

And eventually as things improved with COVID people becoming vaccinated

and more, more information about how to handle it, we once again started having

aides come to help take care of her.

And then, In November of 2021.

My mother called me one morning that she really felt terrible

and something was wrong.

And I went over and her, her, she was having increased difficulty breathing.

Her temperature spiked.

It jumped from like 101 to 104 in less than an hour.

I called visiting nurse services because at that time, in addition to

having an aid coming once or twice a week visiting nurse services was coming

twice a month for medical checkups.

And.

I called them, but I also tried increasing her oxygen.

I gave her a nebulizer treatment and they helped a little bit, but not enough.

So we called an ambulance.

She was taken to the emergency room.

Of course, I couldn't go in because there were still

significant precautions for COVID.

And it turned out that it was not COVID.

As I was suspecting, but she had bacteremia.

She had a blood infection in her lungs and in her blood.

And she spent about four weeks in the hospital.

And then Two weeks in rehabilitation facility, finally coming home

in late December of 2021.

And then, you know, through the holidays and January with visiting

nurse services coming in this and that, it was like there were times

where we weren't just in like the immediate crisis mode and realizing that

increasingly what we were doing for her wasn't enough, but it was

too much for us, especially me.

I mean, I was feeling for years like, I can't do this anymore.

I can't take this anymore.

And I just kept doing it because I had the responsibility and commitment to

her, and I didn't really know what else to do or how to do things differently.

What was the defining factor in that?

So what about January of 20 This would have been 2022.

Yes.

Was different.

Yeah.

What, what was the straw that broke the camel's back?

So I, I, I put it in slightly different terms.

It wasn't like there was a major event where it was like enough already.

I, cause I, I had, I had been feeling that way, unfortunately for years.

And of course there's terrible guilt that goes along with that.

But.

My husband and I have a very dear friend who is like a brother to us who had moved

from New York State to North Carolina.

Maybe 8, 10 years prior and kept encouraging us to move down and we

were really interested in doing that.

And it, but it was always like, okay, in the future, you know, when our son

graduates from college, when this, when that, and finally February of 2022,

my husband and I took a trip to North Carolina for some business reasons.

And then when we came back, we looked at each other and said, you know,

our son's graduating from college in May, we could move this year.

And we were struggling too, with the fact that Even though we were working

with a great home health care agency, we were not, we couldn't rely on the aids.

And because I have my own business, and I have a good deal

of control over my own schedule.

When the agency would call me and say, tomorrow the aid can't come

or like, oh, the aid who's supposed to come this afternoon can't come.

They would say, can you know, do, would you like us to find somebody else?

I would say no, because I knew that the agency was serving people who had no one.

And if I needed to, I could step in and help my mom.

But it was just all of these factors coming at once.

Me realizing I can't take this anymore.

It's not good for my mental health and my physical health

and it's way too much for me.

It's not nearly enough for my mom.

You know, my mom was needing not only somebody every day for some

assistance, but she just, she needed to be in a more supportive setting.

Her her schedule was, for years, was completely, I

would say, non existent.

She really would have benefited from more structure.

So, that was, we, you said, you know, maybe now is the time.

And then we spoke to a few realtors about selling our house and they were

like, the market is and It's the best time possible to sell a house.

And we put our house on the market and within a few days, we were under contract.

So all of these things.

All these factors came together.

To be that tipping point.

Okay, so then you had some stars aligned that you had a friend that

was encouraging you to move to a place that sounds like you wanted to move to.

Mom's needs were more than they had been before and no signs right

that that was going to relent.

And so it sounds like Like with most complex decisions, it was

a constellation of different things kind of coming together.

Was her cognition at that point something where she argued with you about going

into a facility or how did that look?

Yeah, so that is a really important question.

And so her, her cognition was an issue more that the vascular dementia

and probably a buildup of, cO2 in her system was impacting things.

She was in a phase during that period where she became very suspicious

and she was suspicious of my husband and verbally attacking him and, and

then became so of me which I cannot articulate how incredibly painful

that was because the amount of.

Sacrifice we had gave given and and actually, you know, one thing is that

through providing so much care for her.

And services that had we not been living next door, she would have had to pay for.

We subsidized her care.

And so she was, she was very suspicious.

However, to our complete shock, when we talked to her about moving at that point.

She was very positive about it.

She got excited.

She was looking forward to it.

And we were, we were stunned.

You know, there had been some issues before where we had been talking about

it for years and she would say things like that I was going to move without her

either, either from a place of accusation or just a place of like, well, of course

you'd move without me and My response always was Of course, we would never move

without you, you know, we wouldn't leave you here by yourself, even if you were

in a facility, you are moving with us, we need to be there to assist you, we need to

check in, we need to visit you and so on.

So she was surprisingly very, very positive.

And the way we.

Selected a facility was we searched online and narrowed it down and

then my husband had another business trip to the region and he went and

he visited the three facilities.

And then we gave my mom information, she looked at the websites you know, I have

to say she was quite amazing for somebody who grew up without an indoor bathroom

and English was her second language.

She used the internet, she could use her computer.

So she explored the websites, we gave her information about

all three places and each of us independently came to our first choice.

And fortunately, we all had the same first choice.

So the decision making was easy and she was very excited to move and

moved in the day before her 92nd birthday that on her 92nd birthday,

they made a lovely party for her.

She was delighted.

And then over the weekend, the first thing went wrong.

And after that, she had nothing but bad things.

I to say about the facility.

And was this an assisted living or a skilled nursing facility?

It was assisted living.

Assisted living.

Okay.

Did she end up going to skilled nursing or she stayed in assisted living?

She stayed in assisted living, but I.

She passed away.

Yes, she did.

And I have to tell you I was terrified that she would have

to go to skilled nursing.

Or that she would have to move up to memory care.

For a variety of reasons.

One is as, as you know, Rebecca we do not have enough health care providers and

especially AIDS working in senior care.

And many of the people who work in senior care as nurses, med techs,

aides, what however they're working are extremely dedicated, but there just

aren't enough people, and they are.

They're really struggling.

So that was one issue.

Another issue was I was managing my mom's money and I was terrified that by

having to move to a different facility, we would double the amount that we

were paying in a month, which would mean she'd run out of money sooner.

And most importantly, I was terrified at the.

Impact it would have on my mother's, I mean, her soul, like that she just

would be beside herself by that move.

What, what did she eventually pass away from?

So it was a combination of things.

She had COPD.

She had congestive heart disease.

She had severe sleep apnea that was not treated because she

couldn't tolerate wearing a CPAP.

She felt, she felt she was really being strangled by it.

And so there was a buildup of fluid.

In her body her, her legs were extremely swollen, her buildup of CO2

in her system, so that she was having terrible hallucinations and she

was having trouble breathing, and She went into the hospital on a Thursday

night and was treated with intravenous Lasix and a BiPAP machine, which

began making a difference right away.

And every day she improved, but they would also pull back

on her oxygen treatments, like kept stepping things down.

And after two and a half days, what we started to see.

was she started to deteriorate.

And at first it was deterioration like we had seen in similar ways in the

past, but then it was getting worse and eventually she was not responsive.

But I have to say those five, six days she was in the hospital and of course

I was there every day almost all day.

It was a gift for both of us.

I don't know if this happens with a lot of people before they die, but a

cousin recently told me that something simple, similar happened with her mother.

But when.

When my mom was in the hospital, it was as if God had removed all the layers

of defensiveness, all the wounds that caused her pain and that caused her to

often struggle to interact with people.

And there was just her pure loving soul, you know, which I had

fortunately seen throughout my life.

But It was so hard because that was not the only side of her.

I saw but during that week, she was just so loving and and so caring.

And like, like every other hospitalization, she would always

ask the staff, how are you doing?

But there was no negative I thought, yeah, behaviors, no anger, no nothing.

She was just pure loving energy.

That's beautiful.

Thank you for sharing that.

That, that's a positive touch to the, of what is a normally a very difficult time.

And it sounds like you've had enough time to look back and reflect on that.

You mentioned at the beginning of the podcast, the adjustment

phase, I know you're in the thick of it and maybe too premature to.

Talk more deeply about that.

But if you had to pick two or three kind of lessons learned about the

adjustment phase to share with someone who is either about to enter it

or worried about that phase or not even thinking that there is a phase.

Can you talk about that?

So I think I think I'm in a phase where I'm doing pretty well.

The Two months following my mom's death were really, really difficult.

I, because of the grief, I was not sleeping at night and so I wasn't

doing very well during the day.

I didn't have a lot of emotion.

I had a lot, I was like in a fog, kind of.

And I think part of it was that the last few years of her life were so emotional.

Some of the things I learned, I learned this too, when I was

caring for my husband and my mom at the same time and during COVID.

I don't know, I had this concept in mind, like from movies and TV shows and books

that When you're going through a hard time, people show up with casseroles

and people offer to help you and I know I've done it in my life to help

other people probably could have done it more, but I was really very hurt.

And struggled with the lack of support from anyone.

There were a couple of people who offered support emotionally, but I had one

neighbor and, you know, and I'm new to this area, we moved, had moved here

seven months before my mom passed.

But I quickly made friends, and it's a very friendly neighborhood and one friend

offered to buy groceries for me and did another friend surprised me with a

bouquet of flowers on one day but other than that, no one, no one helped and, you

know, in this day and age, when you can...

Sign somebody up for meal plans or do a lot of things long distance.

So I was really surprised.

It was really nice in the beginning to get beautiful flower arrangements,

but I can't eat a flower arrangement.

I couldn't feed my husband a flower arrangement, you know I, flower

arrangement doesn't bring groceries to my doorstep and things like that.

So for two months, I was really struggling because I.

Wasn't sleeping, and I didn't feel well mentally and physically, and pain

of losing my mom was just amplified by this isolation and loneliness.

What would good support have looked like?

You know, there's some expression about when somebody is going through

a hard time, don't say to them, you know, let me know if you need help.

I think a lot of us, especially as women, are told and raised not to ask for what

we need, like it's selfish or greedy.

And I, I know, you know, that was part of my upbringing.

But also when you're struggling with caregiving or you're

struggling with grief.

A lot of times you don't have no idea what you need, or you don't

have the energy to ask for help.

So it would have looked like people showing up with food.

Which people?

Friends, family, neighbors.

It would have looked like friends and family long

distance sending food, you know.

So I think.

Yeah, I, to me, I think food is a big, big aspect.

Because

it's just it one.

It's how we show that we care.

And I think it's also a relatively easy thing.

So, like, probably, I mean, I've offered to friends when they

were in difficult situations.

I've said, I will come and clean your house.

you know, but a lot of people are not comfortable receiving that kind of

care, but receiving some groceries, receiving a casserole, receiving a

gift certificate for takeout or a meal subscription or something like that.

I think food would have been a really big thing.

And the other thing is that don't expect the person who is struggling to reach out.

You know, for me, when, when my, I was caring for my husband and my mom,

not during the worst of it, but when I, things were a little better, but

I was still caring for both of them.

And there was still COVID.

, you know, when my mom died, there were people I heard from once, maybe twice,

and then I didn't hear from them again.

I don't know who really knows that I was here suffering so much, you

know, physically sick for two months.

So this is going to be really unfair and we can edit this out, but I

think this is what my audience will expect of the podcast is to kind of

walk through some of these things.

Yeah.

So what do you feel when you think the thought, nobody showed

up for me, nobody brought food?

What's the one feeling that comes up?

Oh, yeah.

I mean, I, to some extent, I feel like a, I can say I feel

like a victim like my mom did.

I feel, I feel isolation and you know, from a practical perspective,

you can say, well, you should have reached out to people.

You should have voiced your need.

But I think the point is that when you're going through these difficult

situations and I had this with caregiving also you're, you don't have the

bandwidth to, to wave that white flag.

And you know, Rebecca, I shared a poem with you about this.

And there was a part of the poem that I wrote to deal with these feelings.

And there was a part of the poem where I said something like.

You know, you said, if I need anything, I should let you know,

but how can you expect somebody who's choking to ask for help?

I hear you.

And and I want to make sure I, I talk about, I'm not trying to be insensitive.

I think this is part of that conversation so my next question

would be, if your brain had a multiple choice and option a was.

Someone brought us groceries, which it sounds like they did.

Someone brought us flowers, which they did.

Someone checked in with me, which they did.

Or option two, which is it wasn't enough.

Or they didn't, or nobody did this.

How does your brain pick...

Option one or option two?

How does it or which one does it pick?

How did it pick option two?

It picked option two because when you talk the period of grief, like separate

from the caregiving, which was years, but the period of grief Which was two months.

Getting groceries once in a two month period is not enough

when you're really struggling.

Receiving flowers is beautiful and I don't want anyone to think that

they didn't bring me a lot of joy.

But after the flowers die, after a couple of weeks, there are still weeks.

of struggling.

So that's, and that's how it's not enough.

It just, I mean, I, I, there were, it's, you know, if I'm, if I'm struggling to

feed myself three meals a day and, you know or, or even get out of the house to

get groceries, it's clearly not enough.

And I'm thinking about this particularly for myself.

So one of my very close friends lost her dad in January and I didn't bring

any food, I didn't offer to bring food.

My assumption is that she has a husband and they have support and I've checked

in a few times, probably not up to what I probably should be doing, but.

I don't and maybe that's outside the scope of this conversation, but as

you're talking, I'm thinking, I'm like, everybody has different expectations of

what the, that support looks like and then different assumptions and then different

privacy settings and then different, you know that's a difficult topic.

I don't know what, how to reach out.

I think it's important to, to validate that it, you know, you

feel this way and I'm, I'm really sorry that it made you feel that way.

And it is an important thing to think about people's experience with

grief and what would help different people through different things.

But I also, on the other side of that, knowing that this is part of

the topic, which is the idea that we can't obviously control other people's

responses to any given circumstance.

And the stress that comes with living in the gap of what should

have happened and what that would have looked like versus what.

It is and the missing out on celebrating, if anything, the, the recovery or whatever

that looked like in its native state.

And so another way to be explaining it to sort of this externalizing

of you know, this response would have been helpful for me.

And I think that's, you know, an interesting exercise in retrospect.

And I'm, I'm sorry that it wasn't up to that.

I guess I'm thinking more in terms of as people kind of build.

resiliency through these types of things.

Another trauma or another disappointment or another stressor

would be me thinking how other people need to think, feel, and behave.

So I can feel better and then when it doesn't add up to that, then that's

always another stressor for me as well.

So not that there's an easy way to solve it, but I always think of it in

sort of those terms of, you know, what I can control, what would be nice.

And as a people pleaser myself, I think there's, at least for me, always some

element of put a whole bunch of stuff out in the world, do the very best you can.

You know, be there for everybody.

And then if you need something, there's almost this pensive waiting to see if

there were, if the world is going to support and return in any element of the,

what you think you have put into this.

And I find that to be a very difficult place in my brain that I, I find so

nonproductive, I can't even go there.

I don't know if that makes sense, but like that would be, that's almost like

not, I wouldn't say off limits, but.

Because I always think that, like, that robs me of that purity of giving, right?

Like, I want to be able to give and give and, and as, as you

talked about, absolutely pure, absolutely putting out in the world.

And there's always some element when I look at the receiving of it, that

is a stressor for me, because now there's almost like this competition

between what I put out in the world and then what's come back to me.

And that's difficult.

And so I don't know.

I've not been in the situation you're in and that that could be something

that would be a new experience for me.

But do you have any part of that in your brain that sort of

doing that, that calculation?

I'm not sure that I followed you, Rebecca.

Okay, I might have to edit that out.

I'm sorry.

I was trying really hard.

You want to try again?

Sure.

And I'm trying to be honest.

I'm trying to say this without sounding like I'm being critical

and I'm not trying to be, I'm trying to talk about sort of the brain

mechanics of how people have stress.

Right?

And so say that.

Okay.

So one of my, one of my interests is the brain mechanics of

how people develop stress.

And it sounds like there is a delta or a gap between it.

how you feel like the world should have responded to your grief and how

it actually responded to your grief.

And my question is, what built the expectation Of response, was it that

you put a lot into the world and so you want to have it reciprocate or

is it a cultural thing where you feel like from your culture people bring

food if there's a grief process or where do you think that came from?

Yeah, that's an excellent question.

And you hit on a lot of things.

So there's, there's many.

So one expectation was food was a huge part of our family.

My mother was an amazing cook and, but also my mother was very

generous with feeding people.

She loved to feed people.

She loved to show people care and support through food.

I remember when I was maybe 7, 8, 9 years old our house was being

painted, and the painting crew were all refugees from El Salvador, and boy

could my mother relate, and She cooked all morning, a beautiful lunch for them.

And then we all sat down together and had lunch.

And that is probably one of the reasons that food is a big deal.

And then I grew up to that food was a big part of showing my care and

love for friends and had things like, you know, I've had friends say to me.

Before this happened or, and even when it happened, if you

need anything, let me know.

Or if the relationship changed and became closer, like, you're

family now, so if you need anything, you know, we're here for you.

Well, they weren't.

And in all fairness, everyone has problems.

And we're in a period now where.

Everyone is still struggling from the effects of the pandemic.

So, you know, I, I, I can know that.

But at the same time, I, you know, my, my bereavement counselor has taught me

that multiple things can be true at once.

And you can hold this feeling on one side and you can hold this feeling on

the other side and, you know, to bring it back to the origins of this conversation.

I think that really is an important paradigm to have with caregiving

because caregiving you can have what seem like conflicting beliefs

and emotions at the same time.

So, you know, some of this has been a process for me to recognize that

like you said that the gap between expectations and reality and some

of my expectations were cultural.

Some of my expectations were people literally said that they would help me.

But I think the key was if I asked but I, you know, it's hard for me to reconcile.

If.

If I know that your mom died or someone in your family died, would I

be waiting for you to ask for help?

You know, I don't know.

So I'm trying not to, I'm trying to let go of any pain and frustration I feel

and know that people that I, had thought would help me love me, even though

they didn't meet my needs at that time.

And, you know, my husband was an incredible source of support.

My son from miles away was My sister was supportive emotionally and I had friends

who came in and out who were supportive, but it is the bottom line was it wasn't

enough, and a lot of people weren't checking in and saying, what do you

need, do you need food, do you need this.

And I.

I think one of the reasons it also upsets me is not not only my personal

situation, but I'm, I would expect that there are many people who

have had the similar experience.

And I'd like to shine a light on this so that maybe we can all be

more direct in offering assistance.

, I thank you so much for being open and candid and vulnerable to discuss that.

As we wrap up here, can you think of any words of advice, lessons learned kind of

some salient tips or insights that you might be able to share with our audience?

Yes, most definitely.

I actually prepared a list of things.

So, one is that caregiving can be a very lonely experience.

I, I was reading on a caregiving website recently that caregiving is a gift.

And I know that one concept of that, it's a gift that you give to another person.

But it could also be the gift of experience.

And for a lot of people who are providing care or receiving care, it's not a gift.

It's a very uncomfortable practically challenging, sometimes

financially challenging and an emotionally challenging experience

that often goes on for years.

And it's really hard to predict the path.

So it's, it's very, very challenging.

I know that I also experienced a lot of guilt.

I felt like if I chose myself over my mother's needs, I was being selfish.

And then I learned an expression, which I, I didn't do the best job applying,

but this expression was, if you do what's best for you, it will be best for them.

And I, I wish I had understood that earlier.

And I think what it would have looked like for me was being Much less for

a lack of a better word accommodating to my mother's needs in terms of my

schedule and and maybe getting her more care if, if it was available,

which is a whole nother conversation.

I think another thing is that I would really invite people who are

in positions to help and I'm not talking about friends and family now.

Healthcare providers, employers.

to ask people, how are you doing and have specific services and sources of

information to connect a person with?

There were very few times where I was asked how I was

doing by my mom's practitioners.

Or even by my husband's doctors.

And, and the other thing that I would recommend is.

As soon as you can, before you start the caregiving journey, or

if you're in the midst of it, stop and think about what the roles are.

If you're the caregiver or you're the care recipient, what are the roles and

Having somebody help you define what those roles are for you,

what you want them to be.

Whether it's a, a case manager or a physician or a clergy,

someone from the clergy.

Because one thing that I really struggled with and my mother really struggled

with was, That I was both her daughter and her caregiver, and she really

resented when I was telling her, well, you can't do that, or you have to do

this because the doctors told you she didn't want that, but yet she needed it.

You know, and she had chosen me for that role, but she resented it.

And I struggled with being in that role and trying to be a daughter to her and

with so much stress of being the one who was trying to get her to comply and

often like rushing in to pick up the pieces because she didn't comply it was

very hard for me to just be a daughter.

Another issue is caregiving's challenging enough, but when there

are mental health issues I think it's important to ask who can help.

I really recommend that people make a plan for caregiving and Even if the

other parties won't participate in creating that plan and also setting

a reminder in your calendar to review it regularly, maybe quarterly.

Because in my case, I often didn't evaluate things unless there was an

outside situation that forced me to.

And then you tend to be in crisis mode and you tend to be right, right.

And, and then the last thing is as much as you are able, and again, for people

who are outside of caregiving or outside of grief, it's really hard, you have to

recognize that people are often not in the headspace to ask for help, but anybody

who is struggling with caregiving or struggling with grief as much as you are

capable, ask for help and or delegate.

I think that's a great list.

Thank you so much for sharing that.

Thank you for tolerating my million questions and sharing with our audience.

I think it's going to help a lot of people.

And I just really appreciate you being here, talking, sharing with everyone.

I know you're still in that acute grief phase, and I think it's a really

important insight that you added here.

So thank you so much for being here.

Thank you for having me, Rebecca.

And thank you for this podcast because caregiving is a really

difficult situation for many people.

And we really need to be talking about it and help each other.

So thank you for serving that important role.

Absolutely.

I'll talk to you soon.