Welcome!

In this episode we continue the discussion I started last week about my great Aunt Margie. We get my Mom's perspective on the entire experience, and deep dive the relationship history along with some lessons learned.

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

My course "unSandwiched: 5 steps to managing mental drama about aging parents" goes live on July 20th. Please see the interest list here.

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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.

. Welcome to another episode of Real Conversations About Aging Parents.

Just like I promised you last week, I have brought my mom on to follow on to the

topic discussed of the end of life care for her aunt and my great aunt Margie.

, I know that there's a lot more for me to talk about with my mom.

That's like, I think that'll be at least four or five more podcasts

unpacking her story about her parents.

how I think about things, how she thinks about things, and lots more to share.

But today, we are going to focus specifically on this more recent,

events here with her caregiving and involvement with a significant elder.

So I like to talk about significant elders because Just as this example,

this isn't all just limited to your actual biological parent.

There are lots of other important people, that we may end up getting involved with

through the course of, of our lives.

So, welcome mom.

Thank you for being here.

My pleasure.

So you're, um, I don't know if I'm supposed to call you mom or

Jackie, what would you prefer?

Whatever you think, whatever you think.

Um,

I'll just stick with Jackie.

So it's less the people's listening to this that if I use the word mom

over and over again, that might Stir some emotions, but we might be

talking about somebody else's mom.

Yeah.

So yeah, we'll say Jackie then Jackie.

Okay.

So welcome Jackie.

Thank you for being here.

And you promised ahead of time to not contradict anything I said last week.

Remember?

No, I didn't.

Okay.

So as I was recording last week, I had this moment in my

head and I was like, Oh shit.

I probably should have talked to my mom before I recorded this entire episode.

And then in the middle of the episode.

You hear me interject and say, um, maybe I should talk to my mom about this, but

I still stand by my, uh, recollection of how that went specifically for the parts

that I was there, but I also didn't want to put words in your mouth and, um, talk

about how, what your experience of it was.

. If you don't mind, I remember during this journey with Margie that you

talked repeatedly about how much she meant to you when you were growing up.

Can you just talk about that relationship, where it came from, what

you, um, how you guys became so close?

Okay.

Um, when I was growing up, my aunt Margie and her family, uh, came out

to our, they lived in the city and they came out to the country pretty

much every weekend for many years.

There were five of us kids, and she had two daughters, younger than I am, but,

um, We all got together every weekend and if they didn't come out, we got together

on Sunday, uh, at my grandparents house.

So we saw each other a lot.

And one thing sticks in my memory about Aunt Margie is when they came out, they

had like a camper on a pickup, and they stayed in the camper where it was cool.

It was actually air conditioned where our house was.

But they would stay there, and I have great memories of going out

there and sitting down with them.

What I loved was that she...

didn't talk to me like I was a child.

She treated me like an adult, pretty much.

I remember her question was always, what are you reading?

And you know how I read.

So that was, uh, that was something that made me feel special.

And I don't recall any of my other siblings doing that, like going out there.

Just to be with them, I could be wrong, but I don't recall that happening.

That made me feel really special to her.

And she was just always kind to me, no matter what.

I love her very much and I know, um, throughout your adult life, we always

kind of lived in the same area and we'd have more infrequent get togethers like

family reunions and things like that.

But when was it that you started getting more involved in her care?

Like, do you remember going from like, oh, I hadn't actually had

her number in my phone to okay.

Wait a minute.

This is, um, something that's coming up more frequently.

Okay.

Yeah.

Well, let me throw this in because it impacts the whole thing.

Um, as you might have, you mentioned last, uh, in the last episode,

her, she had two daughters.

Her oldest daughter had some, um, uh, handicaps, some problems.

And that was always a big, um, it was a burden, I know, but I admired her

because she, see, every summer she was with my Cousin at the hospital for long,

long periods of time, and my cousin would be incapacitated for a long time.

Uh, as the girls got older, um, her second daughter, um, developed

some, um, a mental illness.

And so she, um, Aunt Margie had a lot to deal with.

And her second daughter, though she had problems associated

with her mental illness, she did, um, help Aunt Margie a lot.

As far as, um, taking her to the hospital when she needed to go, taking

her to the doctor, advocating for her.

Karen always wanted to be a nurse.

And she wasn't able to do that.

She did become a teacher, um, and worked some as a teacher, but she

always wanted to take care of people.

And so she did take care of her mom.

So a couple of years ago, when.

That daughter died very suddenly and unexpectedly.

I realized at that point that Aunt Margie being divorced a long, long

time ago depended on her daughters and now she really didn't have that.

Um, about the, a year before that, uh, we had moved out to a part of the city

where we were very close to Aunt Margie.

It would only take me a few minutes to get to her house.

And I kept telling her, uh, talking to her about, Hey, we're right here.

You need anything, give us a call, uh, just checking in with her.

But I guess, I don't know if it was about a year ago that she really

started maybe a year and a half.

Um, like just asking me occasionally, could I take her to the doctor's

appointment or take her to get her COVID vaccine and thankfully.

My husband is wonderful at helping also, so sometimes he took her, uh, it, it was

difficult just moving her around because she was quite a large woman and mostly

needed to be in a wheelchair if, if there was any distance or any, um, if the, if

it wasn't just flat pavement to walk in.

So he was real helpful with that.

So that, yeah.

That was the beginning.

And you want me to stop there and let you?

For sure.

I know.

Yeah.

Um, so part of it, one of the, when I think about how people end up getting

involved with someone else, obviously there's some relationship and then

sometimes there's what you've described, which is a decrement in social.

Support.

So this would have been the loss of her daughter, but sometimes it's that

they're widowed or they stop driving.

There's some sort of decrement.

But 1 of the things that we always forget about as I is, I think, a more 1 of the

most important factors is geography.

It's simple distance and we can think and say, well, the daughter is supposed to do

this or the son is supposed to do this.

And a lot of the times it really comes down to the practicality

of Google Maps of like, Well, who actually lives in that same city?

And I've seen geography overcome what you would consider almost

the natural laws, right?

So they can have a daughter who's a healthcare professional in another

state, but the son who's not a healthcare professional and lives down the street

is much more involved in their care, much more, you know, kind of ground level.

So, Um, in my mind, when I think about this topic, I always think,

you know, geography ends up trumping most intentions, right?

And so you, uh, you know, I know you didn't necessarily select that part

of town just because she lived there, but, um, it was very convenient.

Well, yes, and I have three of your grandchildren, so that was a big pool.

I'm sure.

Um, but yeah, so, so going back to part of it's that simple proximity.

And, uh, the positive thing about that is it makes it really convenient.

And sometimes the difficulty with that is you're also now the most

convenient person, um, and the pressure you can put on yourself or

the, the guilt you would have if not further participating goes back to

the, well, I only live a few minutes away, you know, what would it take?

What would it do?

And that's my whole thing here, right?

Is, is not coming in with a pre Predetermined agenda of

what this should look like.

It's just that conversation of how these things develop over time.

Um, and that it starts with a couple of appointments.

Um, and but when you're with somebody who has a progressive illness, like she

had, um, and is aging, and she was in her mid 80s by mid to late 80s, um, you

know, these, there's certain trajectories and trends that are not really

helpful Known to reverse themselves.

And so what point did you start to feel tugged and tugged to me is,

you know, Hey, this is infrequent.

I, uh, this is easily fits in my schedule to wait a minute.

Um, how am I going to start reconciling the needs that are starting to exceed?

the time or resources I have to do it.

Well, during this past year, her health was declining and she was falling a

lot, as you, I'm sure you remember.

And, um,

I believe it was the first time she went in the hospital over the last

year was, um, because of the UTI.

And she, as both of us know, a lot of times when an elderly person, especially

with other comorbidities, develops an infection, commonly UTI, and it

can just drag them down, um, overall.

She got extremely weak.

And, uh, by the time she was ready to come home from the hospital, well, she wasn't

ready to come home from the hospital.

She went to a rehab facility.

And I was happy that she was at the rehab facility.

It would give my cousin, her daughter a break.

And also that maybe she could, uh, get some therapy and try to keep her mobile.

That was a big issue for me that although she had difficulty.

She still could, she could use a walker, uh, in her room.

She didn't use the walker.

She was able to get up, go to the bathroom, go, you know, things.

So I was just hopeful that she could get enough therapy to bring her

back to a level where she could at least stay mobile in her own home.

Um, unfortunately she.

Was very, very unhappy with that facility and she left AMA

basically after a few days.

I didn't know that.

Are you serious?

Yeah, I hadn't heard that.

She demanded, I was there.

She was like, I'm leaving.

I am not staying here anymore.

And she was at a relatively nice, like subacute rehab type setting.

It wasn't, it wasn't, I mean, I've been in a lot of them like you have,

and it, it, it wasn't the best.

It wasn't the worst.

It was a, you know, it was your, uh, uh, average Medicare type facility.

Um, but she hated it and she was in a room by herself.

She, it was, it was, uh, you know, had two beds, but there

wasn't anybody in the other bed.

Um,

she really told them that she was leaving.

That's it.

And they started getting things together to try to assist her, um, to do that.

Wait, wait, wait, wait, wait.

Did she bring you over there to bail her out?

Did you know you were going over there to have that conversation?

That she was leaving and I, I said, well, do you need someone to pick you up?

I thought they discharged her.

That doesn't make sense.

You know, that's clever.

I didn't discharge her already.

She, but anyway, so I go over there and she basically said, I'm

not going to stay here anymore.

Um, apparently she had had, um, had an episode during the night before

where she, I think had a panic attack.

And she had not been sleeping at all there.

Um, for, I mean, uh, uh, they brought a chaplain in and she

said that he sat and talked with her for hours and she enjoyed it.

She was, that made her calm down.

But She just said, I'm not staying.

So it was like a hurry up.

We'll try to get things together for you at home thing.

She had one thing I regret is she had, um, oxygen in the, um, facility.

They didn't send her home with any oxygen.

And I really felt like she needed that.

And we never could get the orders for it and get it arranged before

she ended up in the hospital again.

So, a long story short, she did go home she was able to walk

from her bed to the bathroom.

That was about the extent of how far she could walk but she could

get up and down, sitting her.

Easy chair and watch TV.

Um, that kind of thing.

So after that, she was hospitalized again.

Um, a couple more times.

because of a UTI.

It was, uh, you know, recurrent UTI.

And she would just every time, of course, that she went and she got weaker.

And the last time she came home, even though she went to a transitional

setting, again, she would not stay there.

I guess she maybe stayed a week that time.

Which really wasn't enough time, um, but apparently I don't want to get

into the pros and cons of different types of Medicare insurances, but she

was told she had run out of her days.

Her days for, uh, rehab.

Um, so I don't know if that was true or not, but that's, that's the story.

She stuck to it.

. Yeah.

Uh, I spent a lot of time with her trying to, um, once she got home,

trying to get her switched over to regular traditional Medicare for, which

of course you don't have to have, um, you're not limited to a short a stay as

with the Medicare Advantage programs.

And especially for things like home health, which I knew she

would need desperately need if she was to stay at home.

Um, so I did get some of that done.

Um,

and then it was, she fell again, getting up to go to the bathroom,

and she said that she then had pain in her hip and her knee.

Um, I got her set up with, um.

Physician to visited visits in the hall, and they came out and admitted

her and, um, did an x ray and found she hadn't broken anything, but she found

it too painful to stand up, which was probably just as well because every

time she got up, she seemed to fall.

Yeah, so then she wouldn't get up anymore.

She did have, I'll take that back.

She had a, a bedside come on.

And, uh, some wooden railings that her son in law built for her

on the side of her bed that were pretty sturdy, so she could manage.

to stand up with her daughter's help to steady her turn and

sit on the bedside commode, but that was as far as she could go.

Um, so that was something anyway, at least she didn't have

to have a Foley catheter in.

Although I don't know if that would have been better for her, but she did

not want that so she was able to get up to go to the bath or to use the toilet.

She was not able to use the shower or anything for her personal hygiene.

So that was a concern of mine.

It was difficult getting home health arranged for her because

she had a, she had difficulty telling the difference between the

visiting physicians and home health.

And how they work together, what those two different entities could provide for her.

So as she, the longer she was, um, incapacitated and laying in bed, it

seemed that her confusion, um, increased.

And that was a telling sign for me because she always had been very sharp.

And I would say, Aunt, Aunt Margie, did you call home help?

And she would always tell me, I don't have home help, which I knew she did.

And I had spoken to the nurse while the nurse was there.

So her memory of those things, and my, my cousin would be standing there

and say, yeah, mom, you remember the lady that comes on Wednesdays or what?

And she had no memory of those things at all.

Um, she was unable to use her.

cell phone to call anyone, apparently, except me,

oftentimes had problems using her cell phone.

Uh, I tried to get the family to let, you know, put a landline back

in because I felt like she could use that, but that didn't happen.

So, um, I was very concerned about her being bed bound and she was.

bed bound for 5 to 6 weeks at the end.

Um, I arranged for home help to send an aid.

to help bathe her or to bathe her.

Uh, fortunately, toward the end, she at least had that, uh,

home health did try to do it.

They, they drew labs.

Oh, I take that back.

They wanted to draw labs.

Uh, apparently she did not let them draw labs.

And then we had to get a specialty lab company to come out and draw her labs.

And it was, it was very difficult because Although she, when I spoke to her, she

understood that she needed certain things.

But then when that person came to the house, she did not want it.

She didn't want anybody there.

Spoiler alert.

Your mom is the same way preaching to the choir.

I know.

Yes.

And, uh, so they would leave because she refused.

And then I would be on the phone with them.

Why didn't you come?

They said, Oh, no, she, she refused.

Uh, so that was, uh, I think being as I am, I have a home health background.

I, I realized that that happens often.

Um, and we get would get phone calls from the family members asking us why aren't

you coming out like you're supposed to to see my mother or my father and the

reason because they refused to let us in.

. I suppose what I'm trying to say is that her, um, her confusion was,

at that point, complicated things.

Because, um, her older daughter, though she has some handicaps, she does work.

So she was not there a lot of the time.

And, uh, she was so, Aunt Marjorie was by herself.

And that, it just made getting what I knew that she needed.

More difficult to actually attain them.

Had you or your cousin ever talked to her about placement in a nursing facility?

I mean, I know that the skilled rehab didn't go well times two, but

um, what was that discussion like?

Well, she had told me on a couple of occasions that she was concerned about how

her situation was affecting her daughter.

And she didn't want to, as they say, be a burden, uh, and she

felt that maybe it would be better if she went in a nursing home.

And I was said, yes, that probably would be better when we can find a place.

Then when she actually went to a nursing home rehab, she wouldn't stay there.

So that's part of what I mean.

She would intellectually agree.

That a certain course was what was needed and she was going to do that,

but when it came right down to rubber meeting the road, it was a no go.

So anyway, that the end, um, my cousin called me about five, six o'clock in the

morning one morning and said that she was in the hospital again, and she wasn't.

I didn't know she had gone in.

Nobody had called me, but apparently, um, she was having a lot of stomach

pain, and they had called EMS during the night, and they took her in.

By the time I found out about it, she was in ICU, and my cousin wasn't...

Real, um, sure what was going on with her, um, I mean, diagnostically, but

the doctor had called her and said that her mother was not doing well,

and she probably should come up there.

So she called me and said, what do you think?

I said, I think when the doctor calls you and says that we better get up there.

So I went and picked her up.

And when I got there.

Aunt Margie was unconscious and intubated.

And, uh, what I was, what I found out was that, um, she had, um, a

gastric ulcer, a bleeding ulcer, and they had done the, um, ablation.

Embolization?

Or ablation?

Yeah.

the night before and stopped it for a little while.

But then it started again.

And

by the time I got up there, she was losing more blood than they could give to her.

And I think they had already given her six or seven pints

of blood when I got up there.

Maybe more.

I don't know, but at least that much.

And that it wasn't long after that, that the physician came in and he

basically said that he was trying to get a radiologist who would come to the

hospital to do another procedure on her.

Um, but when he spoke to the radiologist, the radiologist told him he didn't.

think it would do any good.

Um, they were, of course, her blood pressure was falling out and they

were giving her different vasopressors to try to keep her blood pressure

somewhere near the normal range.

Um, but I realized after knowing her history and everything that was going

on that this was not going to end well.

And apparently that finally with that visit with the physician,

it became clear to my cousin also that it wasn't going to end well.

He said, uh, we can keep doing this for as long as we can to

keep her alive or we can stop now.

It would be my cousin's decision.

And that's when I called you.

Because I know that my cousin and Aunt Margie so loved and respected you and

appreciated your opinion and your advice.

And as you mentioned last week, my cousin was so worried about, will, will my family

think that I should have kept trying?

That I should have kept her alive as long as medically sustainable?

And I said, would you like to talk to Becky?

And she said, yes.

So that's when I called you and you spoke to her for a little

while, and then you came up there.

So that's when our experience coincided there.

Well, thank you for filling in a lot of the gaps from that.

I will say, um, as a physician that's got a lot of experience in brain

injury, something I always think about, even with you, you, you talking

about it, that I don't, I don't know that there's a, uh, uh, this

is a common way to think about it.

But.

Anytime you have somebody that is in her age group and had all the comorbidities

that she had, um, including diabetes and things like that, those, the,

the brain tissue does not sustain a low blood pressure very well.

And the deficits that come from even short periods of relatively low

blood pressure are very pronounced.

And it can feel like in the middle of a bleeding episode, like.

You know, stop the bleeding or, you know, that that's going to get you out

of the woods, but at that point, the, the prolonged low blood pressure issues, uh,

sit so, um, differently with me because of the impact they have on quality of life.

And sometimes, you know, in medicine, we can't get it always precisely right.

And, and sometimes you can extend a little bit of chronological life.

Um, and I worry sometimes.

That we are, are we doing that because it's what's right for that person who's

experiencing the suffering and who has to live with an anoxic brain injury

on the other end of this possibly.

And again, I am sure that this is not a normal way to think and I, in the

middle of a crisis, you're not thinking about hypotension and brain injury.

But I, I sometimes having stood at that intersection always

wonder how much of it is.

Us wanting to secondarily, um, avoid the grief reaction, um, and

you can get very involved with what you think you can control, which

is the blood pressure and the heart rate and the blood glucose levels.

And, um, and there's always obviously a time and a place for that.

But at some point, I wonder when maybe subconsciously it transitions from.

Um, making the best decisions you can as a surrogate to what I think would be a very

natural response, which is also trying to avoid, uh, the, the pain and the grief

that will come with this eventual outcome.

And what I noticed being up there with you and, uh, and her daughter was as much

as I felt like it would be like that.

It wasn't.

It was, I would say, um, A very special time.

She made so many jokes.

Uh, I, I, I don't know, just so giggle at some of the things that she said, um,

even with her mom there, but I thought that's a, why, why not share that with her

while she was, you know, still with us.

. And I knew Margie enough that she would have laughed too.

Like that was, she was not a.

A, uh, you know, I don't know what the right word is, but a vain person.

I mean, she always, I think, appreciate a good satire.

And, um, and anyway, so I, I think, you know, my fear was we would go up

there and that, um, your cousin would, uh, you know, not be able to do this.

And, and I, I mean, you have to like, what was I thinking?

What are you going to not do?

What are you going to walk away?

Are you going to not support your mom?

Of course you're going to do that.

And, um, and I just, uh, as I said in the podcast last week, I mean,

carry it as an honor to be there.

And I just have, you know, such a different view of what, you know,

what I consider exit ramps in life.

And, you know, I almost feel like it's like.

This might be an earlier exit than I thought, but this is sure a better exit

than the next one, which would be, you know, some prolonged state of extreme

suffering and bed sores and repeated pneumonias and, you know, um, and so I,

I, I think of it just sort of, uh, from a different perspective and I'm going

to allow some grace that maybe I won't feel that way if it's you or my dad.

Um, but you hope you want me to make fun of you?

No, I'm just kidding.

Well, no, I want you to, you know, use the word joyous.

And I know we were both there together.

And people may misunderstand what what that word is meaning to you and to me.

But, um, I mean, my cousin also cried, right?

And so it wasn't as if we're all standing around joking about my aunt dying.

It was you.

Um, to acknowledge that this was happening, which it was a huge

step for her and for me that this was the end for Aunt Margie.

And all of my, my mom's siblings had been alive until that day that was going to be

and I knew I would have to talk to my mom.

And that was difficult, but we have always used that type of banter with each other

to get through difficult situations.

You and I, my cousins, my family.

So for us, it was natural.

We would be upset and crying one moment.

And the next moment, well, I remember, the next day was Mother's Day.

Remember that?

Yeah.

And the day before this happened was Aunt Margie's birthday.

And, um, you had handed me a card that her grandchildren had

written to her for her birthday.

And I couldn't finish reading it.

I got too upset reading it because it just was so beautiful and

heartbreaking at the same time.

And also, um, we were talking to Aunt Margie about these things.

Yes.

The, for all we knew, she could hear us and understand us.

Including her in what we were talking about, and we did finish reading that

card to her, and I hope she heard it.

You had to read it, I couldn't finish reading it.

Well, I read it, and we got through it, and do you remember what my cousin said?

Well, I think, you know, since her, Karen, her sister had passed a couple

years before, she said, I think mom wanted to spend Mother's Day with Karen.

Yeah, that got me to, um, it was, I, I found it, uh, for people

are going to learn a lot about my family through the podcast.

And I'm actually, I think that's part of this, right?

I want to be real and transparent.

Um, Margie definitely represents a very, very, uh, very small segment

of my family that leans a little to the left and, uh, politically.

And, um, it's always been funny because.

Because, because Cindy said, I can't believe mom's not going to live to

see Donald Trump go to prison, and y'all kind of hugged each other

and she said, at least she saw him get indicted and I just could not.

Well that's, you know, Margie, that was a big topic between Margie and I.

Since I am, I'm of the same.

My, as in my aunt Margie on that.

So we would always be talking about the latest information on Donald Trump.

Um, I wonder if the nurses are overhearing any of this or maybe

everybody has their own way.

And I think it wasn't as big a surprise to me, even though I, um, that's

the first time I had ever physically been with someone when they passed.

holding her hand when she passed.

That was my first experience of that.

However, in my home health background, I worked with a lot of hospice nurses,

and we would have case conference when I, I was the director of clinical

services, sit, talking with them.

They shared their experience as each patient passed.

They would talk about that patient at the next case conference and what happened.

And I learned then that there are as many different ways for that situation

to go as there are patients and families.

And I agree with you that it was, I felt, an honor for us to be able to

be there with her when she left us.

And it, she had told my cousin on the way to the hospital the night

before or that night she went in.

She said, if this is my time to go, I want you to know that I'm ready.

So that was a great solace.

Right.

Right.

And I feel very sure that Aunt Margie knew deep down that she wasn't going

to live through that hospitalization.

Did she tell me, uh, there was some discussion you had where she

told you she was afraid of dying?

Oh, no.

She was afraid of dying.

She, well, when I talked to her about hospice, because after the visiting

physician had been out to see her, and I spoke to him on the phone, he said,

have you talked to her about hospice?

And I said, um, that I would.

So I, the next time I was there, I did talk to her.

And I told her what that meant and what they could do for her and her

situation and how it might be, um, best for her to make, take that option

at right now, you know, like, as you and I both know, my stepmother

was on hospice three or four times.

It doesn't mean you're going to die once you're admitted to hospice, it

just, you need that palliative care.

They can give you a lot more concentrated care, um, and provide

more services in that, under that Medicare benefit or insurance benefit.

And she agreed with all of that intellectually.

And I said, do you want me to have a hospice representative

come and speak to you about it?

And she said, no, not yet.

Because I don't I'm not ready to admit that I'm dying.

I thought that was a very truthful answer to me.

And again, I told her, you don't have to what you have to have a terminal

diagnosis, but you don't have to die, because you go on hospice, but that If

she reached the point where she would like to talk to him to let me know and I

would get them out there to talk to her.

So that was where, um, she didn't say she was afraid.

She just didn't want to admit it to herself.

And what came after that comment?

Well, that was, um, Or was that the end of the sentence?

That was a completed thought?

No, I just left it with her.

That if she wanted, when she felt ready, I would have them come and talk to her.

I would contact them for her and she never brought it up again.

I didn't either because she, to the end, I mean she knew what she was doing.

So, uh, that was her decision to make if she wanted to make it.

And there, you know, that's something that I think is important to discuss,

because as long as she was mentally competent, she had the right to live

the life that she wanted to live.

and hopefully the death that she wanted also.

However, there was also on the other hand, when she would, uh, be

forgetful or refuse services that she had told me that she wanted.

That's a hard thing, I think, being from the caregiver point of view, whether

you are respecting her wishes or whether she's not understanding what she's doing.

That's a hard distinction to make, and I spent a lot of time worrying

about that, and trying to talk to her about it, but I never did come to a

really good, um, resolution to that.

What I want to deep dive is, about a week before this happened, and

I discussed it on the podcast.

Was I, that was the most distressed I think I had ever seen you on this topic.

Um, and when I, that was with your, your grandmother in the country during that

time, I think it was at least as stressed.

Oh, that was long.

That's a whole other podcast.

You were a child still at that point.

But yeah, so that wasn't my first rodeo.

Okay.

So this most recent rodeo you had, um, so this was just back in May.

Um, and we had spent that Sunday, uh, talking a bit about it.

And when I was trying to deep dive with you, what your experience was, um, and

I've never broken this down with you.

This is, you'll, you'll hear this for the first time.

What it made me think of was this imagery.

Of you as a little girl developing a relationship with this, this family

member that you cared for, and it was reciprocated in a way that you felt close

and that maintained even if you weren't in close contact throughout your adult life.

Um, but it's almost like a little piece of you almost like

a little jar with like fireflies.

Was is in that person because of what they meant to you when you were a kid,

and there's, they always have that jar.

It doesn't matter where they go, how far they go, what they do in life, you

know, what their political leanings are.

None of that matters, right?

That jar is in them.

And when, um, you get drawn further into proximity to this person, you're

almost triangulated with the little jar that they have inside of them.

That's that's you're caring for them that you wanting the best for them.

And then as you've articulated.

The decisions they're making that you feel, um, are not your version

in your head of what you want for the person that has that jar.

And when I really pushed and pushed you on this, um, and you were gracious

enough to let me do that because you know, I'm interested in this,

you said, I don't want that for her.

I don't want her to be without a bath.

I don't want her to be in dirty sheets.

She that's not, that can't be her that she can't be treated that way.

And it was a very visceral, like.

And I said, what is it?

What is it?

What is it?

What is, what is bothering?

Is it bothering you that she's declining home health?

Well, you know, she can do that.

Is it bothering you that she's, you know, confused or, you know, getting,

uh, mixed up between these two services?

Well, you know, that happens.

What actually seemed to bother you the most, the most visceral

reaction was how she was, her body was physically being cared for and

the conditions in which she resided.

And what ended up happening is you got juxtaposed with this intense need to

protect her from that physical experience and the, the, the setting, the depressing

setting of the room and the trap, the.

I've got to get up and then just pivot over to the bathroom and get back in

my bed and, um, really having some difficulty accepting these limitations.

And I would say, as is very common, maybe some unrealistic hopes or thoughts that

she would start walking again, right?

And, uh, what I saw was...

You weren't able to go nor legally able to go make those decisions on her behalf

and say, you must get a shower today.

You must change your sheets.

You must do this.

And even if you had tried, she could decline that.

And then I feel like it's this really interesting suspension of that firefly.

Jar, and it's there and it doesn't matter what they look like.

It doesn't matter how sick they are, but it's there and it's like, how what

a painful or what can be a very painful stressful experience of us trying to

sit well with ourselves for those people that we have that relationship with.

Um, And then the way it happens in my head is, well, if that's that person and

you're committed to them and you care that much about them, then there is no

limit to what you should do for them.

And there are practical limits, which I talk a lot about in the podcast,

but in your head at the moment.

That's your firefly, right?

And you're, you're like, okay, well, whatever time it takes, whatever money

it takes, however many miles I got to drive, how many we got to do this and,

and at some point it just becomes in almost, um, oppositional to the direction

that they're going and the pain that it is to, to be a part of that, but then

also needing to stay in the game because that's what you do for your fireflies.

Yeah, that's a good way to describe it.

How, how, how is that, so tell me like, is that how your brain felt or can you, do

you, have you had time to reflect on that?

I think that's a, that's a good description.

Uh, now that you put it that way, I have of course didn't, I'm not good, as good

with metaphors as you are, for sure.

That was, um, that's a good way to look at it.

I, I remember saying that to you.

Um, maybe this will illustrate it.

I know, um, when it occurred to me that because she could not get out of bed and

because her daughter has some limits.

As to what she's physically able to do, um, that I would look at her

skin to make sure that there weren't any bed sores, no pressure ulcers.

And fortunately, she did not develop any, but, um, when I realized that she was on

the same sheets continuously for weeks.

This was about the third weekend that I finally read.

And I talked to her, I said, let me get.

Let's see if we can get some clean sheets for you and maybe I figured

if I could get Stephen over there we could roll her and change the sheets

while she was in bed right and she said, Well, I just have one sheet.

Why, her.

She's not poverty stricken, although she would have at that point in

time she qualified for Medicaid.

And of course her daughter would have gotten sheets for her had she asked.

Um, her, but she was not that type of person.

She would push me to accept money if I took her to the doctor's office,

which I wouldn't do, and then I would find, like, ten dollars in my purse.

It was something that she never wanted to take advantage of

anybody, or not pay her own way.

Um, but she had said, I just have the one sheet and I just, that

hit me so hard for some reason.

And I remember I went and bought two sets of sheets for her bed and brought

them back and I said, um, the aid is coming in the morning and when she bathes

you, she can change the sheets for you.

So here's the sheets for, you know, which set would you like to put on there?

So a couple days later, I went back over there and she had gotten a bed back,

but she had the same sheet on her bed.

So what I wanted for her wasn't necessarily what she

felt like she could accept.

And it was not, I realized that's not under my control.

She has access to these sheets now.

If she wants them, she can have them on her bed.

So that's what I mean, just that constant, how far do you push?

When do you say, yes ma'am, I understand that's your decision.

Um,

so, yeah, that maybe that will explain a little bit.

Yeah, I, I think it does.

Um, and I think it illustrates a very common conundrum, which is the 1st

assumption is that they don't have the access or information needed.

And so you think I'll drop a booklet off, I'll buy a new sheet,

I'll, um, install a landline.

And sometimes that's just sort of a, the facade, the initial issue underneath

that, which is they visit, they can't even cognitively conceive of the

movement it would take to replace the sheets or the burden they would feel

they were putting on the aid to replace the sheets, which is weird because

Her sister, which is my grandmother, which is your mom that lives with me

has a weird thing about sheets as well.

And not only certain people in the earth can change the sheets because

everybody else has put out to do so.

But, um, but anyway, so going back to, um, I think it can be a little bit

of like a, you know, sort of a front for, uh, not an intentional front,

but just sort of this initial past is, oh, they just don't have access.

They don't know how to buy it.

They just don't have the information.

And then what can be underneath that.

Is also sometimes a cognitive issue, like I don't know how to use that.

I don't know how to I'm embarrassed or I don't know how to tell you.

I don't know how to use this.

Um, I mean, I'm, you know, uh, guilty of this myself having, you know, bought a

printer for my grandmother at the time.

. And it was one of those like all in one, four in one printers that never saw a

printed page until it was returned to me.

And she said it was far too complicated.

Uh, and I was so proud of myself for buying that printer.

I thought she could just print photos.

This is a long time ago anyway, but, but it was a good lesson for me.

And I think about that printer sometimes of that, that, that sort of mismatched

intentions and wanting to take care of somebody and, oh, you like pictures.

Well, why don't I get you a photo printer?

That's.

super nice that you're never apparently, uh, you know, not going to be able to use.

And it's kind of, it's humbling too.

Right.

And, and I want to make sure, I mean, I talk a lot about aging

parents and significant elders, you know, I'm under no illusion that

I'm not going to be one myself.

So I, I'm very sensitive to talking about them as if they're some different tribe.

I mean, they are us, right.

They are a different season of us and how we.

How we take care of ourselves and take care of them is the whole crux of this

entire project, um, or how we navigate that if there's more difficulties,

if there's relationship strains.

I mean, you talk about somebody that you loved very dearly.

Um, and, uh, I will tease a future podcast with you about your

experiences with a father who you had a completely different sentiment for

so you're going to let me bring you back to talk about that.

I will because of one thing.

When people, when you were a child, you told me that you'd like to,

you liked talking to old people.

And I said, really?

How come?

He said, because they have a lot of wisdom.

You can learn a lot from them.

Are you sure I said that?

I don't remember saying you did.

Okay.

Maybe 10 years with it.

And I, you did like spending time.

With the older people in our family, more than any of my other kids.

That's for sure.

More than I think was typical for a child.

You, um, you sat and talked to them.

Which is different from going to visit them.

So I'm sorry if I never told you that before.

No, I didn't know that.

Look back at it and see what you're doing now.

And there's a, there's a clear line all the way through.

Well, and you know, I, my grandparents on my dad's side

lived walking distance from us.

And I spent a lot of time with them and they ended up passing

when I was in high school.

And my grandmother, who's your mother and lives with me now.

I mean, obviously we've spent Seven years together living together.

So yeah, I would agree.

And it's funny you say that because after I had my own kids, I was

like, kids don't know anything.

There, there are some, I think some people who are really drawn to small

children and I'm like, they have nothing to add to my understanding of the world.

Um, and I, I do love my kids.

You know that, but, um.

I've always found that, that sort of me being informed as a middle aged

adult is, is more exciting to talk to people that have been through it.

Um, and uh, so I, I think we have a lot more conversations to come,

uh, a lot more podcasts to do.

So hopefully you'll be a regular.

Um, and I just appreciate you coming on and, um, talking to

me about that shared experience.

I don't think people do that enough.

I mean, that was a very powerful experience we had unexpectedly.

Together, um, and I appreciate the chance to walk through

it and for you to, to share.

And I know aunt Margie was aware of this project I was doing and supportive of it.

And so I'm hoping.

Um, that she is listening to this and feeling, um, proud that she's able

to contribute to the conversation.

Um, I think she'd be, uh, happy and I'm, I'm glad that we can share her

story and, and what she meant to us.

So thank you so much for joining me.

I will, uh, call upon you again soon.

Do it.

I'll, I'll be here.

All right.

Thank you.