Welcome!

In this episode we talk about four different significant elders with Sally. She shares about her worries, her hopes, her experiences with both her in-laws and her parents. Her father has had dementia for several years, and her mother is still very sharp and active. Join us for this nitty gritty conversation!

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!

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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 everybody.

Thank you so much for joining me in this next installation of Real

Conversations about aging parents.

Today we have Sally with us.

Welcome, Sally.

Well, I'm, I'm glad to be here.

Well, um, I appreciate you being here.

Why don't we just start off, tell me a little bit about yourself.

Um, what's your background, uh, what part of the country you're

living in, those types of things.

Okay.

I have lived off my life in Michigan.

Um, Western Michigan is kind of where we reside.

Um, I've been married for 40 years.

I have two, uh, two daughters.

Uh, one is 38, 1 is 35, and they're both married with.

Kids.

Um, I, uh, trained, um, to be a registered nurse and I worked

in the hospital for 30 years.

I stepped away from that job, um, to help with my first grandchild.

Tell me, tell me about some hobbies.

Tell me some things you enjoy doing outside of taking care of grandkids.

Sure.

We, I guess growing up with our kids, we liked nature.

We took a lot of nature walks, so that's one of the things we do.

Um, We have a little vacation place an hour away from where we live.

It's on Lake Michigan, so we enjoy, uh, walking up the beach.

I'm not one to, um, lay in the sun.

I don't like that.

But walking up the beach, we love to do that.

And your, is your husband working or retired?

He is, um, getting close to retirement age.

He's 64.

I am 61.

So his hope is to work a little bit longer cuz I am on his insurance.

Okay.

Um, so yeah, his, his hope is to work another few years

if possible, but, um, yeah.

Well, great.

Uh, one of the reasons I was so interested in talking to you when we first, uh,

got in contact was you are at a stage where you can see some potential for

some issues, or maybe you're having a little, uh, a few issues already,

um, wondering about, you know, x y you know, z If the, the algorithm, if this

happens, then this should happen and, and really getting involved with that.

So can you just give us an idea of.

Um, the significant elders in your life, who they are, and, um, okay.

What some of your, your issues are, concerns are about them.

Yep.

So basically, I was talking with my husband last night.

We've been married 40 years and four years into our marriage we started de

um, having difficulties with parents.

Um, his.

Parents are now, um, deceased, but his father started struggling four

years, you know, into our marriage.

And he just had a lot of, um, bizarre, sad things that happened.

You know, to him.

He, he d um, really struggled with, uh, rheumatoid arthritis,

very bad chronic pain.

Um, very debilitating.

He really wanted to retire soon, um, you know, because of his ailments.

So, um, he was so desperate.

He made some poor financial decisions and they lost lots of their, their money.

And so that was just kind of, kind of hard to, uh, was agonizing for my husband

to watch that happen to his, his father.

Um, he finally ended up with a, um, diagnosis of congestive heart

failure, and then he had other just bizarre health issues that could

never really pinpoint, um, his issue.

He ended up with a trach for breathing.

And then the last few years, he finally got a diagnosis of a rare, um, lymphoma

called, um, Walden str Walden Stroms.

And, um, that eventually took his life.

So he passed away in 2003.

So 20 years, you know, that of our marriage.

We watched that.

Then my husband's mom, um, started struggling and she lost a son.

In 1972, so this little boy was about 10 years old and she never really got over

from, um, the trauma of losing a child.

And so she kind of developed kind of a depression and just

she liked to live in isolation.

She did not.

Interact a lot.

And so that was kind of hard on the family cuz we were her support

and she also chose not to drive.

So, um, when my husband's dad could no longer drive, you know, all the burden

of, um, transporting and getting her what she need needed was put on her family.

Um, the good part of that was there was another brother

slash sister-in-law who helped.

With that.

And so we didn't have to do it a hundred percent, but um, then the end

of her life, she was diagnosed with Parkinson's and some swallowing issues.

And, um, but she was, yeah, she really, um, balked at going to an

assisted living facility and she lived home, so that was kind of stress for

us to think, you know, is she okay?

And then she started having more crisises and having to go to

the hospital and then she would.

Probably go into a rehab facility for a few weeks and then, um, with home

Health Services, she was always able to like, squeak out of, you know,

those settings and get back home.

And so then we had to, you know, kind of worry about her again.

And then one week she called an ambulance three times and

was brought into the hospital.

And at that point we just told her, you know, you need to go to assisted living.

And she finally agreed.

And, um, she lived, she seemed to perk up a little bit during the year

that she was at assisted living.

She found a friend and it.

Just kinda, yeah.

Helped her emotionally, but then she developed some, um, some more

significant health issues, ended up in the nursing home, and then she passed

away, and that was about four years ago.

She died in the beginning of, uh, 2019.

So she at least, you know, avoided the covid scenario.

Yeah.

Um, My parents.

So they're the ones that are, we're move to your parents.

Can I, can I ask you a few more questions about, um, yeah.

Your husband's parents, so what was the care setting that

your father-in-law needed?

Did he, uh, stay at home the whole time?

Did he end up going to an assisted living or nursing facility?

Yep.

He pretty much stayed home, but then he would also have some health crisis.

He would, he would get pneumonia at, go to the hospital.

Get treated, go to rehab for maybe a month, and then end up at home.

And my, um, mother-in-law, I, you know, I have to hand it to her.

She actually dealt with a trach and trach care.

Um, so yeah, they, they did live, um, you know, in their home, which yeah,

was kind of a worry to us because, you know, they, they needed, um, Yeah, they

lived an isolated life and we were their kind of, their backup and, um, yeah,

it was just kind of a sad scenario.

How, how far did they live from you guys?

Not too far, I would say probably a mile.

So that was, that was good.

And you mentioned, um, some of the financial losses.

Um, That happened, uh, in the latter part of your father-in-law's

life, how did that affect, did that affect the decision making?

Like if you hadn't lost that money, what do you think would've been different?

Yeah, that's a good question.

I think probably their retirement looked totally different, um,

than what they were planning on.

Um, um, I'm not sure the total dollars they lost, but it was a lot of money.

Yeah.

And, um, I think probably if they could have went maybe to an assisted care

slash even a condo early, early in their life, maybe, um, they would've done

that if they hadn't lost all that money.

And on that note, if you're comfortable sharing, can you, do you have any

lessons learned from how that happened?

Wa was there something that could have been done to intervene or prevent that?

Did the family look back and say, You know, do you have anything to share

with anybody who's worried about that?

Yeah.

You know, I think, yeah, that it, that's a good question.

Um, they, they kind of did their own thing, you know, I think

my husband was, was there to.

You know, if they had asked them for, you know, if he a, if the, if my in-laws

had asked my husband for his advice, he probably would not have encouraged

them with some of the decisions that they did, and by the time we found

out about it, the money was gone.

Hmm.

So, And as far as, um, you mentioned your, your husband has two, uh, one living

or one living, living sibling, correct?

Correct.

How did y'all do the division of labor or decision making or,

um, is that person out of town?

That person is in town, um, at.

Right now he is also, um, struggling with health issues, but at the time of the

parents, he, um, yeah, he, he, my husband would talk with them, but they pretty much

left my husband to do all the decisions, which was kind of hard, um, for Aaron's.

And getting stuff done.

We took like a every other week, um, thing.

So I would do one week and then they would take care of the next week.

So I didn't have to do everything.

And if we called them and said, Hey, we need your help doing this, they, they

were pretty, um, pretty willing to help.

So you felt like it was generally, I don't know if fair is the right

word, but generally, Distribution of reasonable distribution of support.

There wasn't a lot of drama about that, right?

Yeah, no, they were pretty, they were pretty good.

Um, they probably didn't communicate with us probably like what we

probably would've liked to, you know, have them communicate with us, so

if that could have been improved.

But yeah, basically my husband.

Would get the information and then he would, you know, relay it onto, you know,

his brother and they would talk about it and, and, and they, you know, they

had a good relationship in that way.

Um, so they made the two brothers would make the decision what to do.

And for you and your sister-in-law, so the people that married into

the family, how was that handled?

I, I know in some di some dynamics are different, right?

So I'll, I can help or I, I have other things going on.

Or how working or how did the married end people, um, participate in,

in caring for the, the appearance?

Yeah.

Sometime it was hard because, um, My, yeah, my mother-in-law tended to

be kind of an ungracious person, and so yeah, it sort of felt used a lot.

And, um, you know, I tried to do everything with a, with a happy

heart, but probably my attitude maybe wasn't, wasn't the best at times.

Um, and, uh, yeah, she, she was, she.

She was a very difficult person to please.

So that was kind of another, you know, dynamic we had to kind of deal with.

Yeah.

And that, that's definitely an extra layer on top of that.

Right, right, right.

Okay, well thanks for letting me answer those couple extra questions.

So tell me about your parents.

Okay.

So, uh, my parents for the most part, um, they're very health

or they were very healthy.

Uh, they lived a full and an independent life.

They lived.

Probably a mile from us in the other direction that my husband's parents lived.

Um, my mom is 89 now.

Um, she's very sharp mentally, but in the last 15 years she developed some

more common age related, um, issues.

Uh, first she had some back issues, so she had a fusion in her back.

Um, that.

Helped her some, but she actually made the comment the other day, she

probably wouldn't have gone through that, um, if she, if she could

have, uh, made that choice again.

Um, and then a few years after that, uh, fusion, she developed some chest

discomfort and she really didn't tell me.

Tell us about it.

She ignored it.

Then finally she did pursue it and after several days, um, she had

some testing and f and then she found her way to, uh, a heart center

and she ended up with a stent.

Um, and then, uh, about 10 years ago, she had a knee replacement.

Um, but through all those episodes, she did well and she was able to return

home, you know, each time from the hospital without going, you know, into

any rehab or assisted living or anything.

And then my father, about 10 years ago, um, we saw some changes in him.

He is, he is 90, so he's about a year older than my mom, so about 80.

He kind of became a little bit more withdrawn.

Um, he didn't contribute to conversations as much.

Like if you called their home, he would, you know, acknowledge you, but

then he, he'd try to get rid of the phone call real quick and, you know,

pass, pass you on to your mom or, you know, he just didn't wanna talk.

And that was unusual.

Um, he started to, what was that?

And that was unusual for him.

It was okay.

And then he started doing some inappropriate things.

Um, One, uh, we were actually in Texas, um, for a wedding and, uh, my nephew's

wedding and, um, the bride had a cake and then a bunch of little cakes by

her cake, and he just, Um, just helped himself before the bride cut the cake,

and we were trying to tell him, Hey, you gotta wait til bride cuts the cake.

And oh, he, uh, he got very angry with us and, you know, you couldn't correct him.

So he, he tended to get, Kind of angry.

Um, his eye start, his eyesight started failing.

He was, um, diagnosed with, uh, macular degeneration and, um, his

driving became more aggressive.

And, um, then with his, uh, He went to a medical doctor and then they just

diagnosed him with, uh, mild age related, uh, dementia, but we kind of felt

definitely, um, it was worse than mild.

And then a couple years later, he was diagnosed with the

Alzheimer's, um, diagnosis.

And for the last three years he's been on a significant.

Decline.

I mean, he's just not the person we we know.

Um, and then what was hard?

Um, because of his, uh, diminished eyesight and his cognitive

issues, you know, I totally felt he should not be driving.

And so I gave my husband this job of turning him into the state.

Um, you can do that online.

And um, so they followed up on that and the state insisted that he needed

a full test to maintain his license and he did not do the testing cuz he,

he wouldn't have been able to pass anyway, so his license was revoked.

And then because of his Alzheimer's, he really didn't understand,

um, that he couldn't drive.

So he fought my mom, you know, verbally.

He never hit my, he doesn't hit my mom, but he verbally, um, he would,

you know, be very agitated and swear at her, which is not him, um, to drive.

And so that was very hard on my mom to have to, you know, Deal with that.

Um, they still live in their own home.

Um, my husband and I are their lifeline.

Um, we pretty much every day I have her text me, um, in the

morning that she's doing okay.

She's up and, you know, doing okay.

Um, we help them with their errands.

Um, house re maintenance.

We're there a lot.

Um, I do bring over some meals.

Not all the time.

She does still cook her meals.

Um, but yeah, it's kind of a burden to just, my worry with that is

if something happens to my mom, my dad would not know what to do.

You mean if she had like a health event in the home?

Right.

If she would.

If she passed away or fall, couldn't get up, couldn't communicate, he would

not know how to call for help, he would not be able to process, um, you know, I

need to go to the neighbor and get help.

He wouldn't be able to do that.

Right.

And so that has been a big stress, you know, to us.

Cuz we feel we can't go way far.

We do have a little vacation home an hour away.

But just a couple weeks ago we went up there and we have a landline cause

we don't get good cell coverage and the landline wasn't working so we

had to pack up and go back home.

Cuz I said to my husband, I can't be here and enjoy being here, knowing

my mom can't get ahold of us.

Um, I have one sister and she is, she lives in the Houston

area, so she's 1200 miles away.

Um, she, she is very good at calling them and um, but yeah, she's 1200 miles away.

There's not a whole lot she can do.

Um, she tries to come maybe once every three to four months,

which I really appreciate.

She stays with 'em for a few days and just kind of evaluates.

Are they Okay?

Um.

But yeah, then she gets back on the plane and goes away.

So kinda leaves me like, yeah, I'm the kid that's gets stuck with, you

know, having to do everything and to worry about the parent and, um, I.

And my, yeah, my mom is very adamant.

She does not wanna go into assisted living facility.

She likes her home.

Um, she knows if they both went as a couple, my dad would probably be locked

up in an area she wouldn't wanna live at.

Um, and then when C O V I D hit hit, that also made her.

Keep the idea.

I do not wanna go anywhere.

If I go anywhere, I'm isolated in this place.

I don't wanna be, and my family can't see me.

So that was another, and that did not help.

Um, you know, the situation of, hey, you guys maybe should

be in a safer place to live.

So, and is she still driving or, or not?

She's not driving anymore.

She, she is driving it.

Okay.

That also does worry me cuz she is starting to have some eye issues,

but cognitively she is, is good.

Now if she has to go any place like across town, um, I really

encourage her to, to call me.

And um, I said I will gladly take you wherever you need to go.

But she will get into the car and she will go to church.

She will go to the um, grocery store.

Um, she claims she feels comfortable, but yeah.

Um, so when you, you and your husband or your family decided to

call and, um, Report the driver's license for your father, was

there any family support for that?

Was everybody on the same page?

Was it difficult?

I mean, I know it would be difficult anyway because of the situation with

him, but the decision to, to take that step, was it, how did that work out?

Yep.

I think every, yeah, my sister, um, was very supportive of that.

And, um, my mom, I did tell her about that, that we were gonna do that.

She was at first, Reluctant, but then she also agreed, yeah,

that's probably appropriate to do.

Um, yeah, she then later after her, the license was taken away.

She actually shared with me.

Yeah.

One of the last times out with him.

He was, Crossing a railroad, um, crossing and the lights

had gone on, on for a train.

The gates were coming down and he said, oh, I can beat this train.

And he actually went through the, the intersection of the train,

um, crossing with the gates coming down in my mom's house.

She said, I saw the train coming.

So, um, yeah, so he just made really bad decisions.

So as far as you, you mentioned one thing that keeps you up or keeps you

worried, which is you're, you're their lifeline, and if something happened

to your mom, then your dad wouldn't know what to do, and so you wanna

remain available to assist with that.

Could you gimme one or two other things that really keep you nervous or worried?

Yeah, I think, I think that's probably the biggest thing, that

they get themselves into a crisis.

And, um, like I said to my husband, they're, they're, they're one

crisis away from a disaster.

And, um, so that, yeah, so that's always in my mind and I think because of who

I am, my personality and I was a, you know, I was a nurse, so I had a coworker

once laugh at me and said, you always.

Think the worst case scenario and then you work back.

Words like, you know, I wa if I walked into a patient room and they

were having trouble breathing, my first, um, my first thought was, oh my

goodness, I have a pulmonary embolus.

Well then when I.

Determined they were not, and ended up being, they just had to get out

of bed and walk cause they had gas.

Um, you know, I always would think the worst.

Mm-hmm.

So, like with my parents, I'm always thinking, yeah, my mom goes

out to her yard to, to weed her leaves and she's gonna, you know,

fall over and she can't get in.

And when I drop them off at, at home, you know, the garage

door goes up and I like have to.

Watched them get into the house with a door shut, so I know they don't fall in

the garage and stuck out in the garage.

You know, it's just, I'm just kind of that personality and I, that's not good.

How, how much time would you say you spend on a weekly basis, um, supporting them?

What does that look like?

It can go on stages.

Some weeks not, not a whole lot, just phone calls, make sure they're good.

Might run to the grocery store for 'em, but usually I do

that with my own stuff I need.

Um, and then there are some weeks that we are there every day.

Um, Just, you know, something broke in the house or, yeah.

My husband gets stuck a lot with, you know, just maintenance type stuff cuz

my dad totally couldn't, couldn't do it.

And if he did, he would really screw it up.

So, um, yeah.

So it depends.

There might be some weeks that we're there helping several hours and then

there's some weeks that it's just a phone call or picking up stuff from the store.

One of, one of the things I really like to differentiate is when we think

about the, the kind of things that you're doing is we, we tend to think

a lot in terms of actual caregiving hours, like how many hours are you in

the home or traveling with somebody?

But what I find is that that's not really ever the whole picture, that

there's also an attention, um, cost or number of hours that you're not.

In contact with them.

You got the text message in the morning or the phone call in the morning and

everything's fine, nothing's going on.

But that the attention throughout the day is what if, what if the kind of

the scenarios you came up with, so how much attention would you say on a daily

basis does that occupy in your brain?

Um, thinking about your parents?

Okay.

Yeah, that's a fair question.

I think probably, I would say probably 50%, you know, a lot.

Um, yeah, the, the other thing I said to my husband too is, you know, I

feel sorry for them in the, you know, the, the life my mom has to live.

She, you know, it's, it's very difficult to take my dad anywhere.

Like even, um, she has found bringing him to church, he

gets nothing out of it anymore.

So she finds it's much easier just to stay home and, um, you know, worship

from the radio and, um, Uh, because yeah, he is, he's just obsessed in church.

He's not even listening.

Nothing, nothing penetrates.

So basically it would be great for her to go to church to get, um, yeah,

just get the support from, you know, her church family, but she chooses

it's easier just to stay home.

So then if I go to, Church and she's not there.

I feel bad for her.

And so I, I have offered to, you know, mom, you need to go

to church, I'll stay with dad.

And, um, she always says, no, no, no, you just go.

But then if we're out and we're enjoying a nice restaurant, I'll

have this guilt feeling of, oh, my parents, they would love it here, but

you know, they're not, and so, so a lot of times my happy times, I have

guilt because they're home and I'm not.

Hmm.

Did you have that a lot when you were younger?

Like were you the hyper responsible child that was always sort of making

sure there's enough gas in the car and everybody's taken care of?

Was that your personality?

Yeah, probably not.

I think it just kind of evolved, you know, as, as I, um, see my parents'

needs grow, um, I probably feel more, more responsible for them.

So, um, as far as the resources they have available, um, if they did need

to go to an assisted living or memory care or hire some help in the house,

one, are the resources available and two, if they are, how receptive are

they to, to those that kind of help?

Yeah, and that's the other frustrating thing I've had to deal with the

count, the county they live in.

Um, actually offers, um, two days, two hours per day, uh,

a week of free, um, care.

They could call and, um, line someone up to come into the home.

And I talked to my mom about it and, um, she wants no part of that.

So that's kind of frustrating because everyone who has used this service.

Speaks highly of it.

Um, we did during Covid we did actually interview somebody that we heard of that

worked on the side, that came into a home and just helped with elder care.

And this person came in and my husband and I went over to their house and we.

Quite quickly, um, realized that this person wasn't a good fit.

So that was unfortunate because that kind of left my mom with a bad taste.

Like, yeah, I don't want anyone to come into my house.

And, um, and then with C O V D, my mom also didn't want

anyone to come into our house.

In fact, her landline, um, Yeah, something went awry with that.

And um, so during, she didn't e she didn't not even want a

repair man coming into her house.

And so we actually started an eight.

Yeah, she was 87 at that time with a smartphone.

So, you know, I have to hand it to my mom for trying to figure

out and navigate a smartphone.

But she, she tried, she did.

She's doing better now.

But, um, Yeah.

So one of the things I like to do in these conversations is to go with

some second and third order questions, um, that kind of help us get to the

more of the thoughts and feelings or emotions that are driving some of this.

So if, if there, if there is a resource that your mom could.

Employed to have somebody come to the home so she could go have lunch with you

or go to the dinner or something like that, and she's not accepting of it.

How do you reconcile that with, there is an option and, and like you explained

there, she's, uh, got, you know, some opposition to having people in the

home, which I, I totally understand.

Um, But how do you put those two together?

So there, there may, there are resources, there are people, you could go another

round and, and get somebody that could be caring and help with your dad.

Um, and then she could go to church or she could go to these dinners,

but she's not, um, what, what does your brain tell you about that?

Yeah, that's, it's very frustrating.

And um, yeah, I become very irritated with that because

there are resources out there.

And she can talk herself out of anything.

And, um, my husband will laugh when he's in the other room and

I'm trying to sell her on an idea.

We have a great, um, center in our town, um, for daycare, for, um,

dementia people, and she tried it.

For just a short period, and he got very angry with her and did

not wanna go, and so she just gave it up and, nope, that's it.

Not, not gonna do it.

And then, uh, yeah, the beginning of this year, she was really struggling

with him and so she said, yep, beginning of the year, I'm gonna sign

him up to go back to that um, center.

And I just said, good, you know, we were quite.

Excited.

But then as the, uh, new Year rolled around, nope, she didn't

and talked herself right out of it.

And, um, she can give you a whole pile of reasons why she

doesn't wanna wanna do something.

Right, right.

Um, and I, I think I'm gonna go back and dig a little deeper there too, but one

thing I wanted to ask is you, you said we're one crisis away from a disaster.

Um, and you mentioned, so your mom falling outside or those types of

things, um, what do you make that mean?

Like if, if, if she were to fall and nobody knew or you couldn't get ahold

of her and she had some complications from that, like, what, what are

you, what are you making that mean?

Like what, what are you worried about?

What, what keeps you up?

Other than obviously nobody wants anybody to fall or to be alone when they fall.

Right.

It seems like there's something extra there.

Yeah.

Yeah.

I just, I just, um, yeah.

Worry that she'll, she'll fall.

Well, one, one thing I've been kind of really on her case with is in

her basement she has, they have a little office room that they've done

bookkeeping, you know, for, they've lived in this house probably 40 years.

And she will not let me bring her checkbook and all this stuff upstairs.

And I have, I can talk till I'm blue in the face and she says, Nope, I

can go down the steps just fine.

And um, she has a way that she goes down that she feels safe, but I

personally feel an older person who Yeah.

Has.

Some mobility issues shouldn't be going in their basements.

We, I know two people personally, um, that were found dead in their basement

because they had to go downstairs.

Yeah.

I don't know what happened if they fell down their steps or what happened

to them, but they were found by family members a couple days later.

And so, yeah, I don't want.

That to happen to my parent.

And I think that's, I guess, my driving force of why I get upset when

I, you know, can't get ahold of them.

If I can't get ahold of them, I'll give them an hour, I'll call 'em again

if I, they don't answer, you know, I physically go over there and, um, yeah.

So you, so we're gonna dig a little bit deeper here on this one too.

So you don't want that to happen.

Right, right.

How are you, how would you feel if that happened?

Does it's obviously happened at least two times that you know of?

Yeah.

Oh, I would, I would feel just horrible, you know, like, wow, they, their life

ended in agony and I wasn't there.

And um, you know how sad and yeah, I probably felt guilt, um, that

they were un in an unsafe, they shouldn't have been home and I.

I let them carry out their wishes and be home and, you know.

Yeah, I, I guess I would just feel guilt.

So I wanna unpack some of this, and I think this is really the, the nitty

gritty here, which is, um, and I'm not trying to pick on you at all.

I just wanted to pick apart some of the thoughts that, that drive some of

the emotions that you're talking about, which is that you let them live at home.

Right.

And the truth is, in every state in the United States, if your mom is competent,

that isn't really a, a decision that a let would, would, that, that verbiage would

mean that there's a, a group decision and, and you don't kidnap her and take

her to an assisted living in which you would have to go to prison for that.

And so, and I know that a lot of people feel this level of responsibility

that, well, I could harass my parent.

Into a safer situation.

Right?

Right.

But you have a parent who you d you know, described as very mentally

sharp, very with it, who's can be made well aware of the basement issues and

the stair issues and that, that her autonomy and the agency she has over

her life and her space is, I wanna go into the basement to do my checkbook.

Um, right.

And it, it probably doesn't escape her that that's a higher risk activity

than say, sitting on the couch.

But that's something.

That maybe none of nobody else can understand, but brings her some

level of engagement, maybe escape, maybe value, maybe familiarity, what,

whatever it is that she's engaging in an activity that has a risk.

Right.

Um, right.

And if we, if we extrapolate back and, uh, not to put on my, my clinical hat here.

I mean, all activities have risk for us included.

So we're all probably what you would say one crisis away from.

You know, some disaster.

And being in rehab medicine, that's what we see is every single crisis

and every single, you know, disaster.

And, and I wonder how your brain looks at, if we look at this objectively,

um, you know, she could fall in her bathroom, she could fall down the stairs.

She could, uh, or none of these things could happen, but, but what seems certain

is she knows what she wants for her life.

Um, but then your brain goes, it seems to be pushing sort of

a, a different gear, which is.

Um, trying to control an outcome with the activities of whom

actually belong to her, right?

So the right, the decision of the activities and whatever

outcomes are associated with that.

And almost every activity will have some trade off and risk.

And so I, I think the core of it, and, and I'm glad you, you got

there, which is, I would feel guilty.

And what, what I think we.

And again, I'm not trying to pick on you, but I find this as fascinating and

my, my brain does this as well, is it feels very good to say, I really want

the best for this significant elder, my parent, and I don't want this to happen.

And if we don't question that and go a little bit deeper, the truth

comes out, which is we're afraid of how we would feel if that happened.

And, and it sounds a little less.

You know, I don't know what you would call it, murder ish to me, when I do

it myself, well I really don't want that to happen to that parent because

I just care so much about that parent.

And that can be true as well.

But what I find when I really shine some light on it, is it's really a selfish

thought, which is, geez, how bad am I?

They're already gonna be gone, right?

This scenario, they're going to have, you know, ended and their life will

have ended one way or the other.

But if that's the way that it ends, um, And then I live with the guilt,

and so I'm trying to control that behavior and that decision making

so that I don't feel guilty later.

But as with everything in life, every time you get in a car, you accept the risk of.

You know, being in a car accident and, we accept risk on a daily basis

because we have some agency in our brain that says, this is the activity

and, and I'm going to accept this.

And, um, but we seem to lose some of that when we have people that we care

tremendously about that are their risk trade offs as they age, keep getting more

and more, um, You know, the likelihoods change or the, the consequences change.

But the, but the truth is, and the way we look at it even medically, is, you know,

obviously people make their own decisions.

They can leave the hospital without, you know, doctor approval.

That's against medical advice.

And, and that can be so hard.

And I feel like I, I'm really interested in, in how much extra

suffering comes to the adult child over this brain's proposing.

Um, you know, whether or not we, you know, let them stay at home

or let them go down the stairs.

And that verbiage is really, um, the idea is that she's, you know, you know, fully

making these decisions and accepting those risks and that that's actually a

beautiful thing that she's at this age and still able to make those decisions.

So, I know that's a whole lot of philosophizing, but how

did your brain sort of, um, think about it in those terms?

Yeah, no, when you put it that way, you know, I guess she is responsible

for her, you know, her, what she does, and you know, I shouldn't, you know,

I sh uh, I guess she just needs to know, you know, I'm there to help.

Um, and yeah.

And I think if, if, if my mom didn't have my dad, So dependent on her as well.

Um, you know, I'm kind of, the other worry I have is something happens to

my mom and what, what would my dad do?

And so, you know, if he wasn't in the picture, maybe I wouldn't be as concerned.

Um, does that make sense?

Yeah, yeah.

I mean, there, he's a vulnerable adult.

Uh, he Right.

You know, isn't able to, to act on his own.

Um, and, and you know, you checking in with him as part of how the, you know,

there's the things we can control and the things that we can't and Right.

That really gets muddy, um, with aging parents and we Yeah.

Uh, sort of perceive we can control more things and we can, um, which

I think causes some additional caregiver trust that maybe.

You know, I want wanna be a part of sort of sorting out, uh, on that end.

But you're right, and every family goes with what if, what if.

And and the main things that we have, like you said, are, is a

consistent, there's a plan, there's a, a family member that checks on them.

And then also what, which, it doesn't sound like you have a lot of yet, um,

or at least your mom isn't accepting of too much yet, which is technology.

Right.

Which is, um, a smart Apple watch that will say that somebody has fallen down the

stairs and alert, you know, other people.

Sure.

Um, you know, uh, an Alexa unit where you could, you know, come sound like,

you know, a God from the sky calling in and saying, dad, how are you doing?

And he doesn't have to operate a phone.

He can, you know, say something.

And I'm not saying these are all perfect examples, but like, you know,

there's a little bit of technology that can wrap around some of this.

Yeah.

And some of it.

Is just, um, one of the best ways I heard to explain there's, you know, my business,

which is what I can control someone else's business and then God's business,

and it's always one of those three.

Yeah.

And to me, you're at a point at that age group where there's a lot more

God's business than maybe there is in a, in your forties or fifties.

Right.

And Right.

That's your medical events.

That's just, you know, things that happen.

And so, um, you know, I, I think of it very similar to, to maybe

when we're raising children and.

You know, you baby proof as much as you can, but, um, but the suffering of,

um, going through that and that's the part I really want to try to look at.

Mitigating that we mitigate all of it and you're always gonna worry.

Right.

Um, About your mom, but it sounds like you've just done, um, a lot of what

we would call like reasonable measures to, to try to give them the highest

quality of life while they're there.

Um, and I can understand and be frustrating if you're trying to

spend more time with your mom or have your mom participate in activities,

um, that you think she'd enjoy.

Um, but the resource.

Implementation is the problem.

It sounds like not the resource availability, which is a whole other

different issue in rural areas, you're not gonna have as much resource availability,

but if there is sort of a respite team that can come or caregivers in the area.

Um, lemme say that again since my dogs are barking.

Um, so a respite team that can come or caregivers in the area.

Um, and, and she's.

Unable, unwilling, however you wanna describe it, to use those, um, then

that, that, I know that can be tough too.

Yeah.

Yeah.

So what do you think is an ideal, um, end to the story as far as, um, you know,

with, with your parents when you, when you sit down and you worry, but you think, you

know, here's what I really want to happen.

What does that look like?

Well, for my dad, I would just love him someday just to slip

quietly away in his sleep.

Um, he had his, my dad's father had that happen and, you know,

that's kind of a blessing.

Um, you know, obviously he, if he got another medical diagnosis,

we, we wouldn't, you know, pursue treatments with him.

Um, so I just would like him to be, you know, comfortable and, um, and then my

mom, I, yeah, I would love her to be able to maybe have a few more years now

she's 89, you know, she's old, but, um, relatively, you know, her health is good.

I would love her after my dad is gone to enjoy, um, you know, some, some

years that she can actually go up.

You know, with us to the little vacation spot we have an hour away and to enjoy

her great grandkids a little bit more.

Um, and, um, maybe someday, you know, she, she would choose to go

to an assisted living facility.

Um, but, um, you know, I wanna respect her wishes if she doesn't.

Um, it would, uh, I wish she could, um, just feel comfortable with someone

coming to assist her, um, other than me.

Um, that would be, that would be great.

Um, yeah.

One thing I, I thought of, and, and I don't think they have, This, but maybe

they do, but it would be very costly.

Um, my mom gets, my mom doesn't mind dealing with my father during the

day, but at night, um, you know, he tends to suffer from the sundowners

and he's trying to pull the drapes at four o'clock in the afternoon.

And I wish there was a place that he could go, um, like

after supper that he could be.

Be safe and she could just have a night's rest without Yeah.

Worrying about him getting up.

Sometimes she'll get up in the night and every light is on in the house.

He hasn't wandered away.

But, um, you know, just, I hate the, the, you know, she's always

kind of on alert, um, with him.

I wish there was a place that he could go that wasn't.

You know, so cost costly that, you know, he could get rest maybe

if he was gonna sleep, but that my mother could get good rest.

Well, what's the barrier for her right now in having him go to a memory care unit?

Is it the cost or is it that she doesn't like them?

Um, it sounds like she is requiring a significant amount of care

and he's passed the threshold that many families would think.

Especially with your mom's health and trying to preserve that,

that, um, that would be an option.

Yeah, I think, I think, um, probably she's, she's had some family members of

my dad who actually all his brothers dealt with, um, the Alzheimer's, so he had.

Three other brothers, two got Alzheimer's and one was killed in World War ii.

So I don't know what his outcome would've been, but all the family

has told my mom the worst thing they did was put their parents in the, you

know, in this assisted living facility.

They wish they had kept them home.

So that doesn't, you know, that doesn't help.

Um, she does hear.

From other people that the care in facilities are, you know,

less than, less than good.

And um, so that's kind of sad too.

Yeah.

Yeah.

So she has input that makes her, that, that influences

that decision, which is Right.

Ultimately hers.

I'm sure he, she's the decision maker for him, so.

Right, right.

Um, interesting.

Well, if you have any, uh, advice for anybody that's sort of on the more

beginning end of all this than you are, Um, yeah, I guess that, you know, if you

suspect your family member is struggling, um, mentally don't look the other way.

Um, you know, we encourage my mom to bring my father into the neurologist,

um, long before she did finally bring him, not that they can cure.

You know, hopefully someday, you know, there's studies coming out that, uh,

you know, there's positive things coming out with Alzheimer's, but maybe

our grandkids will benefit from that.

I don't know.

But, um, just don't ignore when you see bizarre behavior because.

Yeah, maybe there's some medication they can go on, um, that can help, you know,

just dealing with their diagnosis and the anxiety that, you know, they go through.

Um, And, and the thing that, bringing my dad to the neurologist, my mom

says they're so caring and they know exactly where he is on his

journey and they're very supportive.

So it is just really good to, um, you know, get the support from, you

know, people around you that know and or have walked the journey.

What's one thing you admire about your mom and the one

thing you admire about your dad?

Oh yeah.

No, my parents were, were the best.

And, uh, you know, I, um, yeah, my mom is very determined.

Um, she's very smart.

She, she's very loved.

In fact, every night, um, probably 95% of the times my daughter, Who lives about an

hour and a half away from where we live.

She FaceTimes my mom because she knows my mom loves the little kids,

and it's usually at bath time.

And, um, so if they're home, they FaceTime great grandma and they're

all talking and, and um, just, you know, um, sometime the visits are.

Really positive.

Sometime the kids are all crabby and it's not so good, but that just gives

my mom just a boost of, of happiness.

So, um, so I, yeah, I just admire my mom.

You know, she can have a horrible day with my dad, but she will, she

will look for the positives and, um, she found a, A little, um, box.

My son-in-law was over at their house a week or so ago, and he pulled out

a box of old love letters that they, um, my parents wrote back and forth.

And, um, sh she's gotten great delight on reading what.

You know, how they began their, um, their life and, um, I think it's helped

her to deal with the difficult days.

Um, so yeah, I admire that she, she looks for the positives.

Yeah.

I did wanna circle back, um, to one thing you said, which was about going

to your vacation house and how you feel like you can't really relax.

Um, can you think of any alternatives?

Could, could you have a sibling that was on call or a neighbor or somebody

that would, that you could hand that off to and that you'd be able to relax?

What would that look like?

Yeah.

Um, I actually did, um, talk to a neighbor who is a real sweet

woman that lives next to them.

And, um, I am, I'm going to get, get her a house key made on, um, I

asked her cuz she found out we had to come home, um, because our landline

wasn't working and she felt bad.

So now she knows the key to their garage and usually inside

they have their door open.

And so yeah, that kind of gave me a little bit more relief that this, this

gal is really ready, you know, she's there if, if need be, she will help.

So that, that did help a little bit.

And then even your sister, right?

I mean, if, even if she's remote, could call and get some

emergency services if needed.

I mean, yeah, the same.

I mean, obviously she couldn't pop over really quickly, but if

it was, you know, an, an event, um, she'd be able to call someone.

Yeah, she could.

Yep.

So, so if you are able to get that weekend away, I want you to send

me a, an email or a text message.

I'd like to know Okay.

How it went for you.

Um, and I just thank you, thank you for sharing this beautiful story

about your parents and your in-laws.

And, um, as you know, the, the mission here is to just keep

sharing stories, have conversations, and, um, learn from each other.

So thank you so much.

Good.

Thank you for listening.

Absolutely.

Okay.