December 19, 2025 • 49 mins
On this episode of The Middle, we're asking if you're prepared to provide care for a loved one when that time comes. One in four US adults is currently caring for an adult or child with a complex medical issue or a disability, according to AARP. Jeremy is joined by Elizabeth Edgerly, senior director of Care & Support Programs and Services at the Alzheimer's Association and Elizabeth Miller, a certified caregiving consultant and host of the Happy Healthy Caregiver podcast. DJ Tolliver joins as well, plus calls from around the country. #healthcare #care #caregiving #dementia #Alzheimers #medicare #caregivercrisis
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Episode Transcript
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Speaker 1 (00:00):
Support for the Middle comes from the stations that air
the show and from you. Thanks for making a donation
at Listen to the Middle dot com.
Speaker 2 (00:13):
Welcome to the Middle. I'm Jeremy Hobson. Our DJ Tolliver
is here as well. And Tolliver, you know, in all
the shows we've done every week for the last two
plus years, we have a unique.
Speaker 3 (00:23):
Issue this hour.
Speaker 4 (00:25):
Okay, what's that.
Speaker 2 (00:27):
It's that both of our guests are named Elizabeth, so
we have an abundance of Elizabeth and I'm gonna have
to probably say their full name every time I address
them so people know.
Speaker 3 (00:36):
Who I'm talking to.
Speaker 4 (00:37):
Well, I have to do that with you, Jeremy the
jazz Man Hobson.
Speaker 2 (00:40):
Exactly, that's right, the first I've ever heard that in
my life. But you know, the topic this hour, Tolliver,
is caregiving, and it's a topic we've wanted to do
for a long time in the Middle that it keeps
getting pushed out of the way because of the news,
But when you look at this issue, it's actually hugely important.
One in four US adults is a caregiver for a
child or adult with a complex medical conditioner disability. Most
(01:03):
of them are doing it for free. And if you
add up all the time that people spend on caregiving
for their loved ones, do you know how much it adds.
Speaker 3 (01:11):
Up to in dollars per year?
Speaker 4 (01:13):
Oh, twenty k a person.
Speaker 2 (01:15):
This rough estimate, I mean that could be I know
the full number, which is between six and eight hundred
billion dollars per year. So it is a very big issue,
and it's something that's being exacerbated by a shortage of
care workers combined with an overwhelming demand for care. So
this hour we're asking are you prepared to care for
a loved one when the time comes? And if you're someone,
(01:37):
by the way, who is caring for someone, you have
some advice we'd love to hear from you too. You
can call it an eight four four four middle that's
eight four four four six four three three five three.
Speaker 3 (01:46):
We'll get to that in the moment.
Speaker 2 (01:47):
But first, last week on the show, we asked if
going green matters to you. Here are some of the
voicemails that came in after the show.
Speaker 5 (01:53):
My name is Scott.
Speaker 6 (01:54):
I'm calling from Grafton, Ohio. I mean, Solar's great where
it works everything, but there is a percentage of the
day that it's not generating electricity. However, I think nuclear
power can work as part of the mix of a
quean energy future.
Speaker 7 (02:12):
AHI.
Speaker 8 (02:13):
My name's Adam Willist. I'm calling from Nashville. I in
general feel like we should do what we can to
reduce waste, not for some world ending, you know, apocalypse,
but just so that our lakes and rivers are clean
and we could go swim in them and fish in
them and live in this world comfortably.
Speaker 9 (02:33):
My name is Susan in southwestern Illinois. I just want
to say that riding my bicycle to run errands, it's wonderful.
I am both getting exercise, saving money, and not polluting.
Speaker 10 (02:48):
Doesn't get any.
Speaker 11 (02:49):
Better than that.
Speaker 2 (02:51):
Well, thanks to everyone who called in, and as always,
you can hear that whole show by subscribing to the
Middle wherever you get your podcasts.
Speaker 3 (02:56):
So now to our topic this hour. Are you prepared
to care for a loved one? And when the time comes? Tolliver?
How can people reach us?
Speaker 4 (03:04):
You can call us at eight four four four Middle
that's eight four four four six four three three five three,
or you can write to us at Listen to the
Middle dot com or comment on social media everywhere.
Speaker 3 (03:15):
Well, joining us this hour.
Speaker 2 (03:16):
Elizabeth Edgerley, Senior director of Care and Support Programs and
Services at the Alzheimer's Association.
Speaker 3 (03:21):
Elizabeth, great to have you on the show.
Speaker 2 (03:23):
Great to be here, and the other Elizabeth Elizabeth Miller,
certified caregiving consultant and hosts of the Happy Healthy Caregiver podcast.
Speaker 3 (03:30):
Welcome to you.
Speaker 12 (03:32):
Thanks Jeremy.
Speaker 4 (03:33):
Well.
Speaker 2 (03:33):
So, Elizabeth Miller, let me start with you, and let's
start with the demand side. Is there more need now
for caregivers than there was before just because people are
living longer?
Speaker 13 (03:45):
Absolutely?
Speaker 14 (03:46):
So.
Speaker 13 (03:46):
We have multiple factors at play, and in particular around
Alzheimer's and dementia, but as I'm sure Elizabeth will say,
all sorts of issues that people are facing, and so
we have more people getting older and needing help at
the same time as we have fewer individuals in the
field as professional caregivers. So we have this perfect storm,
(04:11):
if you will, that's getting worse and worse as we
get older. And it's really we're starting to see it
in our neighbors, in our families, it's really all around
us that there are more and more people really desperate
for help.
Speaker 3 (04:27):
Yeah, Elizabeth Miller, what would you say?
Speaker 12 (04:30):
Yeah, I think it's everything that Elizabeth Edgerley said. And
then also, we are outnumbered, right. I think the new
sat I heard is that there's twelve thousand people age
sixty five and older every single day, and people are
having smaller families, and technology medications is helping people live longer.
We've got a lot of chronic comorbidities things happening, and
(04:52):
it's overwhelming. I've experienced the Sandwich generation and I know
firsthand what it's like.
Speaker 2 (04:57):
Well, yeah, tell us a little bit about your personal story.
The reason that you have this show that you do
started when your father passed away and then you had
to be a caregiver for a brother and your mom
at the same time.
Speaker 12 (05:11):
Yeah, I'm lucky to have some supportive siblings for sure,
But I have an older brother with an intellectual and
developmental disability on the autism spectrum, and my father and
my mother in law actually passed away the same year,
so we were simultaneously squeezed in our family. And then
I became a primary caregiver for my mom and we
had to figure out what we were going to also
(05:31):
do with our brother. So there's a lot of sharing
the care and things happening there but I was also
working full time. Let's not forget that over seventy percent
of caregivers are also working a full time job. So
you talk about the invisible labor that we're doing, but
we also have to work to pay our own bills.
Speaker 2 (05:50):
Absolutely, and Elizabeth Edgerly, one thing that many people want
to do in a situation like that, if they can
afford it, is to hire somebody. But there's a shortage.
Why is there such a shortage of people who can
do this kind of work for pay.
Speaker 13 (06:06):
It's a tough job. I'm gonna say that first and foremost.
It doesn't pay very well and it can be really difficult.
And so what happens is people can make more at
the local coffee shop sometimes than they can working in
assisted living or home care or a nursing home, and
so sadly they make these choices. And so what we
(06:30):
look for, though, are people where they want their job
to really feel their passion too. And that's the good
news is that there are people who turn to that
kind of work because they're passionate about helping others. But
the reality is is we have this tremendous shortage and
we need nine hundred thousand more individuals in the field
(06:51):
in the next seven years, just to keep up with
the demand. And part of it, too, is the turnover
is tremendously high. So in for example, assisted living in
nursing homes it can be as much as one hundred
turnover in a year, and home care is not much better.
So it makes it really hard to have someone you
(07:11):
trust who stays with you for a longer period of time.
Speaker 2 (07:16):
Well, and then there's the issue of money. Medicare, for example,
Elizabeth Miller, does not pay for long term nursing home care.
What kind of support is there from the government or
other places if you're trying to pay for this kind
of thing.
Speaker 12 (07:31):
Yeah, well, it's really fragmented and Jeremy and like you said,
it's shocking to a lot of people that Medicare does
not pay for long term care. And so as a
person that's you know, in the middle, what are your choices.
Our choices are long term care insurance, which is super expensive.
You may have some veterum benefits that you can that
you can tap into. There's an arduous process for Medicaid,
(07:54):
and every state has a different Medicaid process and a
different long waiting list. Some states do you have some
caregiver benefits where you could potentially be a paid family caregiver,
But those are far and few between, and there's a
lot of paperwork involved in that, so adding yet one
more thing for the family caregiver to do to figure
it all out.
Speaker 2 (08:14):
The other thing I'm wondering about, I'll go to you,
Elizabeth Edgerley on this first, is how difficult is it
to shift your perspective when you are the family caregiver
and treat your loved one as a patient rather than
a family member or a partner.
Speaker 13 (08:29):
Yeah, that's a great question, Jeremy, and it is hard.
It's very difficult to separate. I was a caregiver from
my mother who had Louis body dementia, and there were
times I have to confess where I know better than
to do some of the things that I did. And
yet because she was my mom and I had a
(08:49):
whole lifetime of how she and I interacted, I would
hear myself saying something that in my professional world I
would strongly discourage people from saying. So I think trying
to stop, take breath and pause and be objective sometimes
in a moment can be really helpful, not easy, but helpful.
(09:10):
And I do think training for caregivers and education and
really trying to learn as much as you can from
others who've gone through it is very helpful, and ideally
before it happens, because once you're in it, you're like,
what has happened? And even for those of us, I
(09:31):
don't want to speak for the other Elizabeth here, but
even if you're sort of an expert, you'll find yourself
in these moments where you're like, oh my goodness, what
do I do here? How do I handle this?
Speaker 4 (09:42):
Yeah?
Speaker 12 (09:42):
Right, I'm loving it right now? Actually, Yeah, with my brother,
Like I cared for my vogues, so that was like
one one avenue, but caring for my brother who's on
the autism spectrum and has an intellectual developmental disability like
completely different resources and paths. And so I've been in
working in this space for a for ten years and
I'm learning and finding out new things every single day.
Speaker 2 (10:04):
Well, and how much of your time do you have
to spend taking care of your brother?
Speaker 12 (10:10):
That has a great question, And you know, I started
tracking it because I think it's important that we make
this invisible labor more visible. And so since May. I
have been tracking my hours that I've been spending with
my brother, and keep in mind, I'm an entrepreneur, so
I don't have the paid time off and the things
that I had back when I was working my corporate
job with my folks. So it ends up being twenty
(10:33):
hours or twenty to twenty five hours a month, which
you think is like, that's half of a work week
that you know, potentially I'm spending caregiving and he doesn't
live with me. He currently lives in a community about
an hour for me, but I'm still his person that
takes him to his appointments and does things. So imagine
somebody that has somebody living with them that has more
(10:53):
demand on them and they're still raising kids and trying
to juggle a job. It's more than a person can handle.
Speaker 2 (11:01):
Well, I'm very interested to hear what our listeners have
to say. Again, you can call in at eight four
four four Middle that is eight four four four six
four three three five three, or you can write to
us at listen to them Middle dot com and we'd
love to hear from you. If you are a caregiver
or if this is something that you haven't thought about.
Speaker 3 (11:15):
Maybe you have.
Speaker 2 (11:16):
Questions for our guests about caregiving again eight four four
four six four three three five three Tolliver. There has
been some effort recently in Washington, d C. To deal
with this so called caregiver crisis.
Speaker 4 (11:27):
Yeah, that's right. It was actually included as part of
President Biden's Build Back Better spending plan here he was
back in twenty twenty.
Speaker 15 (11:34):
Today I'm outlining the third plank of my Build Back
Better program, mobilizing a twenty first century care and elderly
childhood education workforce to deal with a caregiving crisis. And
it's a crisis in this country. If we truly want
to reward work in this country, we have to ease
(11:56):
the financial burden of care that families are carry well.
Speaker 2 (12:00):
When the Build Back Better Plan became the Inflation Reduction Act,
that provision about caregiving was removed from the legislation.
Speaker 6 (12:09):
Taliver.
Speaker 2 (12:09):
So nothing exactly, but you know, there are some things
that are being talked about in Congress right now.
Speaker 3 (12:15):
So we'll see if this comes up again.
Speaker 2 (12:18):
But you know, once you get into an election year,
it's very hard for anybody to get anything done. We'll
be right back with your calls coming up on the middle.
Speaker 3 (12:28):
This is the Middle. I'm Jeremy Hobson.
Speaker 2 (12:29):
If you're just tuning in the Middle as a national
call in show, We're focused on elevating voices from the
middle geographically, politically, and philosophically, or maybe you just want
to meet in the middle. This hour, we're asking if
you're prepared to care for a loved one when that
time comes. Tolliver, what is the number to call in?
Speaker 4 (12:44):
It's eight four four four Middle. That's eight four four
four six four three three five three. You can also
write to a set, listen to the Middle dot com,
or on all social media.
Speaker 2 (12:53):
I'm joined by Elizabeth Miller, host of the Happy Healthy
Caregiver podcast, and Elizabeth Edgerley at the Alzheimer's Association. The
phone lines are lighting up, so I'm going to go
to Chris, who is calling in from Philadelphia, Pennsylvania. Chris,
tell us, are you caring for a loved one or
are you prepared for this?
Speaker 1 (13:13):
Well?
Speaker 14 (13:13):
I am both. I was both not prepared and I
am still caring for my father. Yeah. So this was
sort of thrust upon me with an emergency situation where
my father was in another state. He was in Massachusetts.
I live in Pennsylvania, had no documents prepared for himself
(13:34):
and ended up in the emergency room in twenty nineteen.
In Massachusetts, we navigated his finances, his medical care, his
legal documents, and then COVID hit in March of twenty twenty,
the day after I've had him sign a will, and
(13:57):
so we navigated medicaid into different states and moving him
from one place to another in Massachusetts and in Pennsylvania
to our home, which is a very old structure.
Speaker 3 (14:12):
And what would you say.
Speaker 2 (14:15):
The lesson that you learned through all of that. Is
there some piece of advice you would pass on to
our listeners about something you learned in dealing with your father.
Speaker 14 (14:26):
I would say, if you are an older person, get
your house in order, have your legal documentation ready, have
conversations with your family. I have three young children at home.
I was still working during COVID in a very stressful job,
and as a woman, it was it fell on me
(14:47):
and me alone. I think, know who your supports are
in your state, because it is not the same in
every state. Who your corporation for aging is. Be in
touch with on the people in your state and know
(15:08):
how to navigate those systems because in so many ways
you are alone.
Speaker 2 (15:13):
Yeah, well, thank you for that call, Chris, I appreciate it.
And Elizabeth Etterly, one of the things that she said
there was to the people who may be cared for,
make sure you get your house in order and make
it a little easier on the people who are going
to care for you.
Speaker 13 (15:30):
I love that suggestion, and it makes a huge difference
knowing what someone wants for themselves, especially if and when
they lose capacity to make those decisions and you're the
one who's trying to do it. But handling legal issues
and all of those things, just listening to Chris is
so hard. And you're right, they're different in every state.
(15:53):
So what might work in Pennsylvania may have nothing to
do with Massachusetts. And so it's like you have to
be become an expert to reaching out for help is
really really important. You should not try doing this all
by yourself.
Speaker 2 (16:07):
Let's go to George, who's calling in from Naperville, Illinois. Hi, George,
go ahead, welcome.
Speaker 3 (16:12):
To the middle.
Speaker 11 (16:14):
Yes, thank you for having me. I'm very excited. I
was listening to the podcast on the radio and I
wanted to share my story. One because Christmas is coming
and also to honor my wife's legacy.
Speaker 16 (16:27):
So I was my wife caretaker for the ten years
that when she was diagnosed with colon cancer, she fought
through this terrible disease. I wasn't prepared to be her
caregiver because I would never expect this to happen to
my wife because she was a very healthy person. And
(16:48):
unfortunately this diagnosis pretty much she's alive. So through the
years that you know, she was struggling with this disease,
I was, you know, I was helping her, you know,
with with with all the medical like the appointment, surgeries
and everything. So this was probably one of the most
(17:09):
difficult things to go through for us. But I was
there for her, you know, during this time. So I
really wanted to share this, you know, you know, this
story over the over the radio.
Speaker 3 (17:21):
Thank you George for that. Let me just ask you
one question.
Speaker 2 (17:24):
Were you able to, for example, continue working while you
were doing that.
Speaker 11 (17:31):
No.
Speaker 7 (17:32):
No, So at that time, I had to make a
lot of drastic changes. So, you know, I I at first,
you know, I had a full time job, and so
I tried to you know, to you know, to work
the hours, but it was becoming you know, increasingly more
grueling because it was an eight to five job, so
I had to just come back home on many occasions,
(17:55):
you know, and and then there was all these appointments,
so it was really a burden for me. Yeah, you know,
and then taking care of my son as well.
Speaker 2 (18:04):
Yeah, well, thank you very much for that call, George
and Elizabeth Miller. A couple things there, But I mean,
what do you say to people about whether they should
continue to work when they feel that they need to
be with their loved one who's going through you know,
cancer or whatever else.
Speaker 12 (18:21):
Yeah, I mean I think, you know, they need a
lot of validation first of all, and you make the
best decisions with the information that you have at the time.
But I do think sometimes our gut reaction can be
to you know, jump ship off of employment. But also
I think we have a responsibility to think all down
the road about what that's doing for our own financial future.
(18:43):
I know, in our case, for my husband and I,
we did not want to put our kids in a
tough situation financially, and you know, we're in the peak
of our career earning years, so you have to really
weigh a lot of different factors, and there's not a
one size solution for all. But I think the point
that the year is that this isn't just a family issue.
This is an employee employee employer issue as well, because
(19:06):
it's hopefully they're seeing that, you know, they want to
keep their valued employees. I know, in my case, when
I was working my corporate job, I was lucky that
I had some options that I could. You know, there
is fmla sometimes paid or unpaid leave that you can
look at, depending on the size of your company, and
so there's sometimes are options. I think you could potentially
(19:28):
go part time. Maybe for me, I had to adjust
my job where I was doing a lot of traveling
and that wasn't working for me. But I could work
within my company to find in a different position where
I could be home, you know, and have more flexibility.
So I think it's a conversation that I want to
encourage people to have with their employer first and look
(19:48):
at everything with their family and if you can do it,
then then certainly make that choice. But it is not
one that a lot of families are able to make.
Speaker 2 (19:56):
Well, and it's probably not one where in every case
the employer lawyer is willing to be cooperative and helpful.
Speaker 3 (20:04):
Let's go to.
Speaker 2 (20:04):
Mimi, who's calling from outside Houston, Texas. Hi, Mimi, go
ahead with your thoughts on this.
Speaker 17 (20:12):
Yes, Hello, I'm calling regarding caregiving of small children. Right now,
I'm taking care of my husband who has Alzheimer's. I'm
also I'm also the former caregiver of a type one
diabetic who was diagnosed at about eleven months old. Uh
(20:34):
and that's hilly breastfat at that time. And I I
wish to acknowledge that these people who take care of
the little ones, the very very small ones, that type
one diabetics especially, it's very very difficult.
Speaker 2 (20:53):
Even compared to taking even compared to taking care of
somebody with Alzheimer's.
Speaker 17 (20:57):
You're saying, yes, yes, it's for a top, you know,
a very little one. Now, I think maybe perhaps today
it's easier because they might have I don't know if
they can give them uh uh pumps pumps today. But
(21:21):
back when my child was small, we could not. And
his twin, his twin had a very very rare form
of leukemia with a boma or transplant with a makeer
with child, et cetera, and taking care of him was
a whole lot easier than taking care of a type
one diabetic, and I think the type one diabetes is
(21:45):
extremely difficult, especially with little ones.
Speaker 3 (21:49):
Yeah.
Speaker 2 (21:50):
Is there is there any piece of advice, Mimi that
you would give to our audience about what they should
do if they're in a situation like you've been in.
Speaker 17 (21:58):
Well, I'm saying that now. It if you can get
them on an insulump thump as soon as they can,
that's the best thing to do. Otherwise it's very very difficult.
Speaker 3 (22:09):
Yeah.
Speaker 2 (22:10):
Well, I appreciate the call. Thank you very much for that,
Elizabeth Edderley. I mean, just thinking about somebody who's taken
care of three different people and small children, of a
husband with Alzheimer's, it's just a lot to think about,
and who could be prepared.
Speaker 13 (22:22):
For credibly, it's incredibly humbling actually to hear what people
are sharing with us. And one thing I want to
make a point about is most of us, not all,
but don't know where caregivers. When we are caregivers, and
myself included, I had to have our call center. I
called once for some information and they said, do you
(22:45):
know you're a long distance caregiver? And I said, what
are you talking about? And we consider ourselves, partners, spouses, daughters, sons, whatever, parents,
and yet we're also in this dual role of being
caregivers for that individual, and so recognizing that sooner is
(23:05):
helpful because caregiver resources exist, and so if we figured
we're out, figure out that we are one of those people,
it can really help in the journey.
Speaker 3 (23:16):
Tolliver, what is coming in at Listen to the Middle
dot com?
Speaker 4 (23:18):
Sure Kiera says, I am caring for my mom who
has severe vision laws and no longer can drive or read.
Kara goes on to express frustration because the care falls
on her because she's the closest family member with no kids,
which I think is an impression point. John listening from NHPR, says, hi,
I'm a nurse practitioner in New Hampshire and specialize in
providing home based primary care to the elderly. Making the
(23:39):
transition from home to long term care is very difficult,
and the Medicaid process takes many months, sometimes a year
or more. Then he goes on to say that sometimes
it's almost better if somebody has a medical emergency because
then they can get better long term care.
Speaker 3 (23:51):
Ah.
Speaker 2 (23:52):
Interesting, and you know to hear from a person who
does this for a living. I wonder Elizabeth Miller how
the immigration crackdown has affected what's happening here. There was
a KFF analysis that found that while foreign born workers
they actually make up one in three home care workers.
Has that been affected dramatically by just the immigration crackdown?
Speaker 12 (24:15):
Honestly, I'm not equipped to speak accurately on that, but
I do think that the crisis that we have is
that we're not paying enough for the work. And I
think if it were a more attractive job where we
were paid enough for it, we could probably fill the
jobs and keep them for Because when we've talked about
how the turnover really affects family caregivers, and that they're
(24:39):
the person training the home care workers over and over again.
So you think that you've got you got somebody who's
really a fit for your family, and then maybe they're
not paid enough and they've got to leave, or something
else happens where they're removed from the situation, and then
they've got to train and do it all over again.
So I really want to see the value of that work,
(25:00):
both for the unpaid family caregiver and for the professional caregiver,
increase so that it is an attractive job that we
can accurately and effectively hire for.
Speaker 2 (25:11):
Let's go to Jim, who's in Baton Rouge, Louisiana. Hi, Jim,
are you prepared to care for a loved win or
are you already doing so?
Speaker 18 (25:20):
I'm already doing so. And we were one hundred percent
not prepared. I was undergoing I had surgery for cancer,
and a week afterwards, I was on the road twelve
and a half hours to Oklahoma where my mom was dying.
(25:43):
And she had not told anybody how bad my dad's
set dementia was. And yeah, she passed away like a
week later, and he was living in our guest room
for over a year, almost two years. We just got
(26:04):
him into assisted living. And yeah, it's been it's it's
it's a real it's it really hurts the family, my family,
that our relationship has been. It's not been great. It's
like I've got I got an eighteen year old crazy.
Speaker 3 (26:25):
Did your did your dad resist going into assisted living?
Speaker 9 (26:30):
No?
Speaker 18 (26:31):
Albeit he thought he was going to go into assisted
living in Texas near my brother because he thought it
was a cooler place to live. But my brother just
wimped out and was not able to help at all.
He could not emotionally handle it, so dumped it all
(26:52):
on us.
Speaker 2 (26:53):
All right, Jim, Well, thank you very much for that call.
And Elizabeth Ederley your thoughts there, you know, as you
hear Jim's story.
Speaker 13 (27:00):
Well, you know, Jim, you raised so many good points,
but one is that not all family members agree, not
all family members feel like it's their responsibility, and that
can be one of the biggest challenges. It's such a
rollercoaster ride under the best of circumstances, but then you
have siblings or others who are questioning what you're doing,
(27:24):
not stepping up or getting in the way, and so
it's just really really tough on all accounts. So I
appreciate Jim you raising that issue because many people are
relating to that comment right now.
Speaker 2 (27:39):
Would you have an advice for people who end up
getting into a family struggle over this where the brothers
and sisters don't agree on what needs to happen or
who should be taking care, They should they be sharing it?
Speaker 3 (27:49):
Should it be one person?
Speaker 13 (27:51):
Yeah, and Elizabeth said this before, there's not like one
necessarily right way to do this. I do think direct
communication with everybody right from the beginning and trying to
involve people so they know what's going on too is helpful,
and then talking about it. I do think there's some
free resources. The Alzheimer's Association has an eight hundred number
(28:13):
and a wonderful website and resources and kind of pull
those together and share them with one another and say, Okay, Jeremy,
you can't help mom now, but can you contribute some money,
you know, can you help pay for this program or
and we kind of try and divvy up a bit.
So I think talking about it makes a big difference.
Speaker 3 (28:35):
Elizabeth Miller, what would you say?
Speaker 12 (28:37):
I think. I mean, family dynamics is something that comes
up all the time, right, and I you know, lived
it in my own family where I'm one of six kids,
and we've got varying strengths and weaknesses and willingness to
kind of show up, you know, in ways for my brother,
and I know it can be really frustrating to bang
your head against the wall and wish that the people
(28:58):
around you that you feel like should show up and
they don't show up. But honestly, everybody's got different strengths
and weaknesses. We all have different capacity. I know, once
I learned how to accept and just say, Okay, this
person's not going to be involved. Let me look around
and find the people who are. And I think family
is certainly one source of help, but is not the
(29:19):
only source of help.
Speaker 2 (29:20):
You know, you're one of six, I'm one of seven,
and one thing that I know is you cannot get
the whole family together for a vacation without getting into
huge fights. So one on one trips are two on two.
That's fine, but not everybody all wants to tolliver.
Speaker 3 (29:36):
You know, it is helpful.
Speaker 2 (29:38):
We've heard from somebody ordinary Americans this hour, but it's
helpful when somebody that everyone knows comes out and says
they're dealing with an issue that isn't talked about that much,
like Alzheimer's or dementia.
Speaker 7 (29:47):
Yeah.
Speaker 4 (29:47):
One of those people is former late night host Jay Leno,
who has been caring for his wife Mavis for years
as she battles dementia. Here he is on Adam Carolla's podcast.
Speaker 3 (29:56):
Jay, I got to ask you about Mavis.
Speaker 5 (29:58):
How is her health?
Speaker 19 (29:59):
How's she I'm doing?
Speaker 3 (30:00):
Okay, you know, it's okay.
Speaker 4 (30:02):
It's anybody that deals with Alzheimer's at dementia kind of
knows what this is.
Speaker 3 (30:07):
She's not in any pain.
Speaker 11 (30:08):
You know.
Speaker 18 (30:09):
You try to find a humor in this situation, you know,
but she's not walking.
Speaker 15 (30:12):
In And how's that sitting with you? I mean, you're okay?
Speaker 11 (30:17):
Is it?
Speaker 15 (30:17):
She's always been fiercely independent and I like the fact
that she needs me.
Speaker 4 (30:23):
Wow.
Speaker 3 (30:23):
Yeah, Wow. We will be right back with more of
your calls on the Middle.
Speaker 2 (30:30):
This is the Middle. I'm Jeremy Hobson. In this hour,
we're asking if you're prepared to care for a loved
one when the time comes. I am joined by Elizabeth
Edgerley at the Alzheimer's Association and Elizabeth Miller, a host
of the Happy Healthy Caregiver podcast. Our number is eight
four four four Middle. That's eight four four four six
four three three five three, or you can reach out
at Listen to the Middle dot com and again full
(30:51):
phone lines. Let's go to Susannah, who's in Buffalo, New York. Hi, Susannah,
go ahead with your thoughts.
Speaker 19 (30:58):
Oh have a and my name is Sanna. I'm actually
calling just to offer a perspective of someone who actually
is needing care from family. I am someone that has
been a disabled individual due to a muscle disease, and
I've been in a wheelchair since I was a child,
and now that i'm you know, in my mid thirties,
(31:21):
I've had my family, you know, just their lives trying
to help me. My parents have had to take their
part time job, and then my siblings have had to
work around their careers as well, you know, chansing work
from home positions just a.
Speaker 14 (31:37):
Bad way they would be able to assist me.
Speaker 19 (31:39):
I also, you know, work from home myself as a
full time job, so it's also difficult for them to
be able to be And I was mentioned like you know,
to be paid for services. Uh, this is mostly dependent
on services like medicaid. Since I do have a full
time job and I am Floyd, I don't meet like
(32:01):
the thresholds for you know, to qualify for medicaide. So
they are just having to you know, just their financial
lives and their lives overall just to help you know,
me live viable.
Speaker 3 (32:18):
What do you what do you say to them?
Speaker 19 (32:22):
Well, I am I am grateful for their help. They
are very they're attentive you know, to my knees, and
they give up a lot, you know to help care
for me, just like all caregivers do have to help
their lost ones. So I think my thought is bringing
up a little just because I do appreciate their support,
(32:44):
you know, after all these years and just helping me,
you know, live as best I can and you know,
be a projective member of society and pretty meaningfully. So
it's just to get from a lot of their a
lot of the time that they give, and that's very appreciative.
I don't think i'd ever be able to save them
(33:05):
back today.
Speaker 3 (33:06):
Yeah, Susann, I so appreciate your call.
Speaker 2 (33:08):
Thank you so much for calling in and bringing that perspective.
Speaker 19 (33:12):
Yeah, thank you so much.
Speaker 3 (33:13):
It's great to talk to you, you too, Elizabeth Miller.
Speaker 2 (33:17):
Very nice to have that perspective of somebody who is
being cared for.
Speaker 12 (33:22):
I think, you know what I loved about what Susannah
was sharing is that it was clear that there's like
a care partnership there, that they're working together. And I
honestly love the term care partner more than I love
the word caregiver. But it's already hard enough for us
to identify as a caregiver. But I think that that
is a visual of like it's a partnership, and when
you're looking at your care team of who's showing up
(33:45):
to help. You also have to look at your care
recipient as a member of that care team, because part
of our purpose as a family caregiver is to help
that person be as independent for as long as possible,
because that is going to be best for their happiness
and their health as well, which is gonna in turn
be happy and healthy for the family caregivers. So the
(34:07):
care partnership is gold and important.
Speaker 3 (34:10):
Let's get to Jenny in Kansas City, Missouri.
Speaker 2 (34:13):
Hi, Jenny, what about you? Are you prepared to care
for a loved one? Are you caregiving right now?
Speaker 10 (34:20):
I'm caring for my twenty year old son. He has autism,
and so it's just difficult to navigate everything and cost
for things like I really needed to have got guardianship
of him once he turned eighteen. So there are certain
(34:43):
things that I can do, but then there's certain things
I can't because I don't have legal guardianship. But the
guardianship paperwork would have cost me about five thousand dollars,
and that's more than I bring home in a month.
(35:05):
It's just difficult, and that's actually a lower cost than
what others have paid for the paperwork, but it makes
it so I have to try to get his permission
for things that so I'm still sort of his parent
(35:27):
the way I was when he was under eighteen, but
then struggling with what I can legally and can't legally do.
Speaker 2 (35:35):
Yeah, and he is not always giving you his permission.
Is that the inference there is that sometimes it's a
battle between the two of you to be able to
do the things that you feel.
Speaker 10 (35:46):
It's a battle because he's probably functionally mid teen, so
probably somewhere between twelve to fourteen, so he's old enough
to know that he should be an adult. So he
tells me, you know, I'm an adult and I don't
have to listen to this or whatever. But so it's just, yeah,
(36:09):
it's an extra, but.
Speaker 3 (36:14):
Well it's not.
Speaker 2 (36:15):
It's a great adult. I'm glad you brought up guardianship, Jenny.
Thank you for doing that. Elizabeth Ederley. That is something
that people who have an elderly parent with Alzheimer's or
dementia may may have to do as well. Five thousand
dollars sounds really quite obscene to me for something like that.
Speaker 13 (36:32):
Yeah, and what we really try to do and that
wouldn't work in this case is for people in the
early stages, people who are newly diagnosed, if they don't
have some legal papers put in place already for durable
power of attorney for health care decisions and finances, those
make a huge difference in being able to act on
(36:53):
behalf of someone else. And again, ideally you want to
choose that person, because you wouldn't choose just anybody's someone
who you really trust and who will act on your behalf.
And so we often try to work with families and
for both individuals, not just the person with Alzheimer's or
another dimension. We all need this because you never know,
(37:14):
and so trying to do that ahead of time. That's
not the case for Jenny in her situation with her son.
But the other thing I do want to say is
sometimes there are some lower cost legal aid available at
the county level, depending on where you live. So I
do encourage people to reach out. And Elizabeth Miller will
(37:36):
know more about caregiving for younger individuals than I do.
But for seniors, there are programs out there that may
have free legal aid, for example, And so if you're
in that situation, really let's turnover every rock we can
to see is there anything that's going to help me here.
Speaker 3 (37:54):
Yeah.
Speaker 2 (37:55):
One of the terms that's come up as we've been
talking about this is the sam Witch generation, people who
are taking care of both of an elderly relative and
maybe a child. Rebecca is calling in from Milwaukee, Wisconsin,
and sounds like he is a member of the Sandwich generation.
Speaker 20 (38:12):
Rebecca, go ahead, Hi, Yes, I have a twenty year
old daughter with something called lenox Gastows syndrome, which is
she's non verbal and has an active seizer disorder, and
I am her legal guardian and she'll be with us
long term. And at the same time, my mom had
(38:33):
a diagnosis of Alzheimer's and Parkinson's. My husband is currently
in Pennsylvania helping his father move into an assisted living program.
And so I have been both kind of navigating the
care of my own my daughter's one of three of
three children, as well as my parents, and then also
(38:55):
thinking ahead of what our future looks like with a
dependent child in a way that we won't be a
burden on our boys, because this has been so challenging
with both sets of our parents, and we will have
this extra challenge of our daughter. I've been thinking about, gosh,
(39:16):
what would it. What are our options, you know, twenty
years from now, in terms of do we move together
into some kind of assisted living facility? You know, what
is that going to look like? So I've just been
wanting to prepare to age a little better because it's
been very difficult to help both sets of our parents.
They've been very resistant to our help. But at the
(39:38):
same time calling us regularly and ask you for our help.
Don't it sort of like help me go away, come
here kind of thing?
Speaker 3 (39:45):
Rebecca.
Speaker 2 (39:45):
Let me just let me just ask you one question,
which is do you take the time to give yourself
some grace and some credit for all the work that
you're doing and even thinking ahead to how you could
make other people's lives easier in the future.
Speaker 20 (40:01):
Wow, I don't know, but I'll receive that from you. Yes,
I do think caregivers often, you know. Yeah, I do
think sometimes we forget that we're pouring out a lot
on a regular basis, and so it is very affirming
to be reminded of that.
Speaker 3 (40:21):
Yeah.
Speaker 2 (40:22):
Well, I appreciate your call, Rebecca. Thank you, And Elizabeth Miller.
It makes me think of you when you're on the
airplane and they say put your mask on first before
you help others. I mean, do caregivers spend enough time
thinking about how to make sure that they are not
going to just be completely overwhelmed by the amount of
work they're doing for somebody else.
Speaker 12 (40:39):
I mean, that is the purpose of what I'm trying
to do. And I honestly we do hear the oxygen
mask analogy a lot, but I don't love it. And
the reason why I don't love it, Jeremy, is because
there's no flashing lights, masks coming from the ceiling, someone
coming on turbulence to say, now's the time, now's the
time you need to take care of yourself like this.
This is somebody's life like they are on a roller
(41:00):
coaster or a treadmill or a hamster wheel that never stops.
And so there's no big signs like that. And so
for me, I had to figure out that I kind
of equated it to feeding a nest of hungry birds,
and that bird going to get the nourishment for my
job and my kids and my pets and my home
and my care recipient and all the things that were
pecking time from me. And yet there was this aha
(41:22):
moment of oh my goodness, if I don't go and
take some nourishment for myself. I'm not going to be
able to keep showing up for all of these people.
And that's really something that I hope is clicking with
the people who are listening, is that this's got to
be a sustainable solution and there aren't some great answers
out there. And so until we can get everything magically fixed,
(41:45):
you have to really depend on our community to help us.
And we've got to be vulnerable and let those cracks
show so that we can get that support and get
that relief and the validation that we need.
Speaker 3 (41:57):
We've got a question coming in from Baltimore, Maryland. Mona
is on the line. Mona, what's your question? Mona?
Speaker 11 (42:09):
Oh?
Speaker 3 (42:09):
Maybe back out there? She is, Okay, yeah, Mona, go
ahead with your question.
Speaker 15 (42:15):
Hi.
Speaker 21 (42:15):
So I'm still like living with my parents and thank
god they're still you know, healthy and have their mind.
But I'm wondering what are some ways I can start
bringing up this conversation of like, you know, we gotta
get your stuff together before I do, don't move out
or like go study abroad, and what are also some
things I and we as a family can start putting
(42:37):
together to get our you know, get ourselves very god
for a bit. If there was to need be a
situation in which we have to start delegating care and
and step into that caregiver, well, essentially.
Speaker 3 (42:50):
Mona, let me just ask you one question. How old
are you.
Speaker 7 (42:54):
Something?
Speaker 3 (42:55):
Twenty three? Okay, thank you for that call. Let's get
an answer. Elizabeth Edgerley, Uh, what do you say, Mona?
Speaker 13 (43:01):
Yeah? Mona, you know what I was thinking of the
conversation with you and your parents, say, you know, I
just heard this radio show talking about how important it
is to have this conversation with your parents, and also like,
you know, I want to know what you want. Have
you thought about this and start the conversation. You may
(43:21):
not be successful the first time you try, so if
it's like why are you asking me that, I recommend
you know, you keep trying and you try different ways,
and you go a little bit at a time, and
also include yourself. Although at twenty three, you know, people
might say, oh, you don't need it, but we all
need to plan ahead for the just in case something
(43:45):
were to happen. So I love that you're asking this question,
and I do hope your parents are happy to have
you ask that question, because it shows tremendous compassion and
forethought that you want them to have it the way
they want it, if at all possible.
Speaker 2 (44:01):
So I love that Gary is calling in from Las Vegas. Hi, Gary,
Are you a caregiver for anyone right now?
Speaker 5 (44:11):
Yes, I am. I'm a caregiver for my one hundred
year old mother. I'm seventy, and fortunately it's gone very
well for myself, my sister, even my ex wife helped
a bunch.
Speaker 3 (44:29):
And why do you think it's gone well?
Speaker 5 (44:32):
Well? I guess a lot of reasons. My mom had,
my dad had left my mom sufficient finances, so when
it was time to go into assisted living, you know
that there's no financial issues. We planned in advance over
the years as she got older, she began myself and
(44:55):
my sister I live in the same town as Mom,
and so we began to put her various accounts in
my name so I could control that all her various
investments all went into one like Charles Schwab account. So
it wasn't a you know, a mess. You know, when
(45:18):
it was time to sell her house, that went well,
The proceeds right went into the account. Again. I was
very fortunate. Her health was good. Her health is still
good today, you know, at a one hundred years old. Yes,
she has a bit of dementia and she doesn't see
or hear real well. You know, she has a great attitude,
(45:40):
so again, very fortunate. She's very positive. So it's just gone.
And I don't mean to gloat. And I know most
people that have called in have you know, have had
much tougher situations and we've just been very fortunate. But
there's been some good planning, you know.
Speaker 2 (45:57):
Also, Hey, I think that's a great call to end
the hour on because you know it's the holiday season, Gary,
and I appreciate you ending us on a nice note
about how well things are going. And and yeah, just
so thank you so much for that, Elizabeth Miller.
Speaker 3 (46:12):
Before we do go.
Speaker 2 (46:13):
What would you say is the biggest piece of advice
you would give to our listeners who are not yet
caregivers but want to do something right now so that
they are prepared when that time comes.
Speaker 9 (46:27):
Yeah.
Speaker 12 (46:27):
I think that we're all going to be caregivers at
some point. So if anyone's listening and you're not in
that position, and I think it's yeah, thinking about what
you want to be true, having the conversations about yourself
and your family members and knowing what your values are
and what's important to you, and you know, the conversations
(46:49):
are everything, and so if you can get in front
of that proactively, you're going to have more options and
choices involved. I know sometimes you do. You kind of
expect and see it coming and you're probably thinking, maybe
is this what are mind? Some of these responsible is
going to come to me? You know what would happen
if and sometimes it doesn't go as planned. Oftentimes it
(47:10):
does not go as planned, and so you can make
the best plans, but you still need the community support.
Speaker 3 (47:16):
Elizabeth Dridley, what would you say?
Speaker 13 (47:19):
Yeah, I think you know, around Alzheimer's specifically, I think
trying to learn as much as you can. I think
I've said that a few times. There's some great resources
the Alzheimer's Association, for example, we just launched a new
app called My All's Journey and it's for care partners
(47:39):
and for people with the diagnosis. Because what we hear
from so many individuals is they get a diagnosis and
they don't get anything else. They don't get any referrals, treatments, help,
and so we thought, okay, we can help a bit
with that, but people need to reach out and get
that help to.
Speaker 2 (47:58):
Try to get as much information as they Yea and
Elizabeth Ederley, Senior director of care and Support Programs and
Services at the Alzheimer Association and Elizabeth Miller, certified caregiving consultant,
host of the Happy Healthy Caregiver podcast.
Speaker 3 (48:10):
Thanks so much to both of you for joining us.
Speaker 2 (48:13):
Thank you for this conversation, and you can continue this
conversation by calling us or emailing us anytime.
Speaker 4 (48:19):
Tolliver Yeah, our number is eight four four four Middle.
That's eight four four four sixty four three three five three,
or you can go to listen to the Middle dot com,
subscribe to our free weekly newsletter which is now on substack.
Speaker 2 (48:30):
And by the way, we can see what people click
on on the substack newsletter and Tolliver. I'm happy to
tell you that your Tolliver's tidbits links are some of
the most popular things on there, so thank you for that.
Speaker 3 (48:42):
People can check.
Speaker 4 (48:43):
Out It's Bigger and bigger Man the Middle.
Speaker 2 (48:45):
It's brought to you by Longnook Media, distributed by Illinois
Public Media Interbana, Illinois. Produced by Harrison Patino, Danny Alexander Samburmasdas,
John barth Anaka Deshler, and Brandon Condritz. Our technical director
is Steve Mork.
Speaker 3 (48:57):
Thanks to our.
Speaker 2 (48:57):
Satellite radio listeners, our podcast audience, and the hundreds of
public radio stations that are making it possible for people
across the country to listen to the Middle, I'm Jeremy Hobson.
Speaker 3 (49:06):
Happy holidays. I'll talk to you next week.
Support for the Middle comes from the stations that air
the show and from you. Thanks for making a donation
at Listen to the Middle dot com.
Speaker 2 (00:13):
Welcome to the Middle. I'm Jeremy Hobson. Our DJ Tolliver
is here as well. And Tolliver, you know, in all
the shows we've done every week for the last two
plus years, we have a unique.
Speaker 3 (00:23):
Issue this hour.
Speaker 4 (00:25):
Okay, what's that.
Speaker 2 (00:27):
It's that both of our guests are named Elizabeth, so
we have an abundance of Elizabeth and I'm gonna have
to probably say their full name every time I address
them so people know.
Speaker 3 (00:36):
Who I'm talking to.
Speaker 4 (00:37):
Well, I have to do that with you, Jeremy the
jazz Man Hobson.
Speaker 2 (00:40):
Exactly, that's right, the first I've ever heard that in
my life. But you know, the topic this hour, Tolliver,
is caregiving, and it's a topic we've wanted to do
for a long time in the Middle that it keeps
getting pushed out of the way because of the news,
But when you look at this issue, it's actually hugely important.
One in four US adults is a caregiver for a
child or adult with a complex medical conditioner disability. Most
(01:03):
of them are doing it for free. And if you
add up all the time that people spend on caregiving
for their loved ones, do you know how much it adds.
Speaker 3 (01:11):
Up to in dollars per year?
Speaker 4 (01:13):
Oh, twenty k a person.
Speaker 2 (01:15):
This rough estimate, I mean that could be I know
the full number, which is between six and eight hundred
billion dollars per year. So it is a very big issue,
and it's something that's being exacerbated by a shortage of
care workers combined with an overwhelming demand for care. So
this hour we're asking are you prepared to care for
a loved one when the time comes? And if you're someone,
(01:37):
by the way, who is caring for someone, you have
some advice we'd love to hear from you too. You
can call it an eight four four four middle that's
eight four four four six four three three five three.
Speaker 3 (01:46):
We'll get to that in the moment.
Speaker 2 (01:47):
But first, last week on the show, we asked if
going green matters to you. Here are some of the
voicemails that came in after the show.
Speaker 5 (01:53):
My name is Scott.
Speaker 6 (01:54):
I'm calling from Grafton, Ohio. I mean, Solar's great where
it works everything, but there is a percentage of the
day that it's not generating electricity. However, I think nuclear
power can work as part of the mix of a
quean energy future.
Speaker 7 (02:12):
AHI.
Speaker 8 (02:13):
My name's Adam Willist. I'm calling from Nashville. I in
general feel like we should do what we can to
reduce waste, not for some world ending, you know, apocalypse,
but just so that our lakes and rivers are clean
and we could go swim in them and fish in
them and live in this world comfortably.
Speaker 9 (02:33):
My name is Susan in southwestern Illinois. I just want
to say that riding my bicycle to run errands, it's wonderful.
I am both getting exercise, saving money, and not polluting.
Speaker 10 (02:48):
Doesn't get any.
Speaker 11 (02:49):
Better than that.
Speaker 2 (02:51):
Well, thanks to everyone who called in, and as always,
you can hear that whole show by subscribing to the
Middle wherever you get your podcasts.
Speaker 3 (02:56):
So now to our topic this hour. Are you prepared
to care for a loved one? And when the time comes? Tolliver?
How can people reach us?
Speaker 4 (03:04):
You can call us at eight four four four Middle
that's eight four four four six four three three five three,
or you can write to us at Listen to the
Middle dot com or comment on social media everywhere.
Speaker 3 (03:15):
Well, joining us this hour.
Speaker 2 (03:16):
Elizabeth Edgerley, Senior director of Care and Support Programs and
Services at the Alzheimer's Association.
Speaker 3 (03:21):
Elizabeth, great to have you on the show.
Speaker 2 (03:23):
Great to be here, and the other Elizabeth Elizabeth Miller,
certified caregiving consultant and hosts of the Happy Healthy Caregiver podcast.
Speaker 3 (03:30):
Welcome to you.
Speaker 12 (03:32):
Thanks Jeremy.
Speaker 4 (03:33):
Well.
Speaker 2 (03:33):
So, Elizabeth Miller, let me start with you, and let's
start with the demand side. Is there more need now
for caregivers than there was before just because people are
living longer?
Speaker 13 (03:45):
Absolutely?
Speaker 14 (03:46):
So.
Speaker 13 (03:46):
We have multiple factors at play, and in particular around
Alzheimer's and dementia, but as I'm sure Elizabeth will say,
all sorts of issues that people are facing, and so
we have more people getting older and needing help at
the same time as we have fewer individuals in the
field as professional caregivers. So we have this perfect storm,
(04:11):
if you will, that's getting worse and worse as we
get older. And it's really we're starting to see it
in our neighbors, in our families, it's really all around
us that there are more and more people really desperate
for help.
Speaker 3 (04:27):
Yeah, Elizabeth Miller, what would you say?
Speaker 12 (04:30):
Yeah, I think it's everything that Elizabeth Edgerley said. And
then also, we are outnumbered, right. I think the new
sat I heard is that there's twelve thousand people age
sixty five and older every single day, and people are
having smaller families, and technology medications is helping people live longer.
We've got a lot of chronic comorbidities things happening, and
(04:52):
it's overwhelming. I've experienced the Sandwich generation and I know
firsthand what it's like.
Speaker 2 (04:57):
Well, yeah, tell us a little bit about your personal story.
The reason that you have this show that you do
started when your father passed away and then you had
to be a caregiver for a brother and your mom
at the same time.
Speaker 12 (05:11):
Yeah, I'm lucky to have some supportive siblings for sure,
But I have an older brother with an intellectual and
developmental disability on the autism spectrum, and my father and
my mother in law actually passed away the same year,
so we were simultaneously squeezed in our family. And then
I became a primary caregiver for my mom and we
had to figure out what we were going to also
(05:31):
do with our brother. So there's a lot of sharing
the care and things happening there but I was also
working full time. Let's not forget that over seventy percent
of caregivers are also working a full time job. So
you talk about the invisible labor that we're doing, but
we also have to work to pay our own bills.
Speaker 2 (05:50):
Absolutely, and Elizabeth Edgerly, one thing that many people want
to do in a situation like that, if they can
afford it, is to hire somebody. But there's a shortage.
Why is there such a shortage of people who can
do this kind of work for pay.
Speaker 13 (06:06):
It's a tough job. I'm gonna say that first and foremost.
It doesn't pay very well and it can be really difficult.
And so what happens is people can make more at
the local coffee shop sometimes than they can working in
assisted living or home care or a nursing home, and
so sadly they make these choices. And so what we
(06:30):
look for, though, are people where they want their job
to really feel their passion too. And that's the good
news is that there are people who turn to that
kind of work because they're passionate about helping others. But
the reality is is we have this tremendous shortage and
we need nine hundred thousand more individuals in the field
(06:51):
in the next seven years, just to keep up with
the demand. And part of it, too, is the turnover
is tremendously high. So in for example, assisted living in
nursing homes it can be as much as one hundred
turnover in a year, and home care is not much better.
So it makes it really hard to have someone you
(07:11):
trust who stays with you for a longer period of time.
Speaker 2 (07:16):
Well, and then there's the issue of money. Medicare, for example,
Elizabeth Miller, does not pay for long term nursing home care.
What kind of support is there from the government or
other places if you're trying to pay for this kind
of thing.
Speaker 12 (07:31):
Yeah, well, it's really fragmented and Jeremy and like you said,
it's shocking to a lot of people that Medicare does
not pay for long term care. And so as a
person that's you know, in the middle, what are your choices.
Our choices are long term care insurance, which is super expensive.
You may have some veterum benefits that you can that
you can tap into. There's an arduous process for Medicaid,
(07:54):
and every state has a different Medicaid process and a
different long waiting list. Some states do you have some
caregiver benefits where you could potentially be a paid family caregiver,
But those are far and few between, and there's a
lot of paperwork involved in that, so adding yet one
more thing for the family caregiver to do to figure
it all out.
Speaker 2 (08:14):
The other thing I'm wondering about, I'll go to you,
Elizabeth Edgerley on this first, is how difficult is it
to shift your perspective when you are the family caregiver
and treat your loved one as a patient rather than
a family member or a partner.
Speaker 13 (08:29):
Yeah, that's a great question, Jeremy, and it is hard.
It's very difficult to separate. I was a caregiver from
my mother who had Louis body dementia, and there were
times I have to confess where I know better than
to do some of the things that I did. And
yet because she was my mom and I had a
(08:49):
whole lifetime of how she and I interacted, I would
hear myself saying something that in my professional world I
would strongly discourage people from saying. So I think trying
to stop, take breath and pause and be objective sometimes
in a moment can be really helpful, not easy, but helpful.
(09:10):
And I do think training for caregivers and education and
really trying to learn as much as you can from
others who've gone through it is very helpful, and ideally
before it happens, because once you're in it, you're like,
what has happened? And even for those of us, I
(09:31):
don't want to speak for the other Elizabeth here, but
even if you're sort of an expert, you'll find yourself
in these moments where you're like, oh my goodness, what
do I do here? How do I handle this?
Speaker 4 (09:42):
Yeah?
Speaker 12 (09:42):
Right, I'm loving it right now? Actually, Yeah, with my brother,
Like I cared for my vogues, so that was like
one one avenue, but caring for my brother who's on
the autism spectrum and has an intellectual developmental disability like
completely different resources and paths. And so I've been in
working in this space for a for ten years and
I'm learning and finding out new things every single day.
Speaker 2 (10:04):
Well, and how much of your time do you have
to spend taking care of your brother?
Speaker 12 (10:10):
That has a great question, And you know, I started
tracking it because I think it's important that we make
this invisible labor more visible. And so since May. I
have been tracking my hours that I've been spending with
my brother, and keep in mind, I'm an entrepreneur, so
I don't have the paid time off and the things
that I had back when I was working my corporate
job with my folks. So it ends up being twenty
(10:33):
hours or twenty to twenty five hours a month, which
you think is like, that's half of a work week
that you know, potentially I'm spending caregiving and he doesn't
live with me. He currently lives in a community about
an hour for me, but I'm still his person that
takes him to his appointments and does things. So imagine
somebody that has somebody living with them that has more
(10:53):
demand on them and they're still raising kids and trying
to juggle a job. It's more than a person can handle.
Speaker 2 (11:01):
Well, I'm very interested to hear what our listeners have
to say. Again, you can call in at eight four
four four Middle that is eight four four four six
four three three five three, or you can write to
us at listen to them Middle dot com and we'd
love to hear from you. If you are a caregiver
or if this is something that you haven't thought about.
Speaker 3 (11:15):
Maybe you have.
Speaker 2 (11:16):
Questions for our guests about caregiving again eight four four
four six four three three five three Tolliver. There has
been some effort recently in Washington, d C. To deal
with this so called caregiver crisis.
Speaker 4 (11:27):
Yeah, that's right. It was actually included as part of
President Biden's Build Back Better spending plan here he was
back in twenty twenty.
Speaker 15 (11:34):
Today I'm outlining the third plank of my Build Back
Better program, mobilizing a twenty first century care and elderly
childhood education workforce to deal with a caregiving crisis. And
it's a crisis in this country. If we truly want
to reward work in this country, we have to ease
(11:56):
the financial burden of care that families are carry well.
Speaker 2 (12:00):
When the Build Back Better Plan became the Inflation Reduction Act,
that provision about caregiving was removed from the legislation.
Speaker 6 (12:09):
Taliver.
Speaker 2 (12:09):
So nothing exactly, but you know, there are some things
that are being talked about in Congress right now.
Speaker 3 (12:15):
So we'll see if this comes up again.
Speaker 2 (12:18):
But you know, once you get into an election year,
it's very hard for anybody to get anything done. We'll
be right back with your calls coming up on the middle.
Speaker 3 (12:28):
This is the Middle. I'm Jeremy Hobson.
Speaker 2 (12:29):
If you're just tuning in the Middle as a national
call in show, We're focused on elevating voices from the
middle geographically, politically, and philosophically, or maybe you just want
to meet in the middle. This hour, we're asking if
you're prepared to care for a loved one when that
time comes. Tolliver, what is the number to call in?
Speaker 4 (12:44):
It's eight four four four Middle. That's eight four four
four six four three three five three. You can also
write to a set, listen to the Middle dot com,
or on all social media.
Speaker 2 (12:53):
I'm joined by Elizabeth Miller, host of the Happy Healthy
Caregiver podcast, and Elizabeth Edgerley at the Alzheimer's Association. The
phone lines are lighting up, so I'm going to go
to Chris, who is calling in from Philadelphia, Pennsylvania. Chris,
tell us, are you caring for a loved one or
are you prepared for this?
Speaker 1 (13:13):
Well?
Speaker 14 (13:13):
I am both. I was both not prepared and I
am still caring for my father. Yeah. So this was
sort of thrust upon me with an emergency situation where
my father was in another state. He was in Massachusetts.
I live in Pennsylvania, had no documents prepared for himself
(13:34):
and ended up in the emergency room in twenty nineteen.
In Massachusetts, we navigated his finances, his medical care, his
legal documents, and then COVID hit in March of twenty twenty,
the day after I've had him sign a will, and
(13:57):
so we navigated medicaid into different states and moving him
from one place to another in Massachusetts and in Pennsylvania
to our home, which is a very old structure.
Speaker 3 (14:12):
And what would you say.
Speaker 2 (14:15):
The lesson that you learned through all of that. Is
there some piece of advice you would pass on to
our listeners about something you learned in dealing with your father.
Speaker 14 (14:26):
I would say, if you are an older person, get
your house in order, have your legal documentation ready, have
conversations with your family. I have three young children at home.
I was still working during COVID in a very stressful job,
and as a woman, it was it fell on me
(14:47):
and me alone. I think, know who your supports are
in your state, because it is not the same in
every state. Who your corporation for aging is. Be in
touch with on the people in your state and know
(15:08):
how to navigate those systems because in so many ways
you are alone.
Speaker 2 (15:13):
Yeah, well, thank you for that call, Chris, I appreciate it.
And Elizabeth Etterly, one of the things that she said
there was to the people who may be cared for,
make sure you get your house in order and make
it a little easier on the people who are going
to care for you.
Speaker 13 (15:30):
I love that suggestion, and it makes a huge difference
knowing what someone wants for themselves, especially if and when
they lose capacity to make those decisions and you're the
one who's trying to do it. But handling legal issues
and all of those things, just listening to Chris is
so hard. And you're right, they're different in every state.
(15:53):
So what might work in Pennsylvania may have nothing to
do with Massachusetts. And so it's like you have to
be become an expert to reaching out for help is
really really important. You should not try doing this all
by yourself.
Speaker 2 (16:07):
Let's go to George, who's calling in from Naperville, Illinois. Hi, George,
go ahead, welcome.
Speaker 3 (16:12):
To the middle.
Speaker 11 (16:14):
Yes, thank you for having me. I'm very excited. I
was listening to the podcast on the radio and I
wanted to share my story. One because Christmas is coming
and also to honor my wife's legacy.
Speaker 16 (16:27):
So I was my wife caretaker for the ten years
that when she was diagnosed with colon cancer, she fought
through this terrible disease. I wasn't prepared to be her
caregiver because I would never expect this to happen to
my wife because she was a very healthy person. And
(16:48):
unfortunately this diagnosis pretty much she's alive. So through the
years that you know, she was struggling with this disease,
I was, you know, I was helping her, you know,
with with with all the medical like the appointment, surgeries
and everything. So this was probably one of the most
(17:09):
difficult things to go through for us. But I was
there for her, you know, during this time. So I
really wanted to share this, you know, you know, this
story over the over the radio.
Speaker 3 (17:21):
Thank you George for that. Let me just ask you
one question.
Speaker 2 (17:24):
Were you able to, for example, continue working while you
were doing that.
Speaker 11 (17:31):
No.
Speaker 7 (17:32):
No, So at that time, I had to make a
lot of drastic changes. So, you know, I I at first,
you know, I had a full time job, and so
I tried to you know, to you know, to work
the hours, but it was becoming you know, increasingly more
grueling because it was an eight to five job, so
I had to just come back home on many occasions,
(17:55):
you know, and and then there was all these appointments,
so it was really a burden for me. Yeah, you know,
and then taking care of my son as well.
Speaker 2 (18:04):
Yeah, well, thank you very much for that call, George
and Elizabeth Miller. A couple things there, But I mean,
what do you say to people about whether they should
continue to work when they feel that they need to
be with their loved one who's going through you know,
cancer or whatever else.
Speaker 12 (18:21):
Yeah, I mean I think, you know, they need a
lot of validation first of all, and you make the
best decisions with the information that you have at the time.
But I do think sometimes our gut reaction can be
to you know, jump ship off of employment. But also
I think we have a responsibility to think all down
the road about what that's doing for our own financial future.
(18:43):
I know, in our case, for my husband and I,
we did not want to put our kids in a
tough situation financially, and you know, we're in the peak
of our career earning years, so you have to really
weigh a lot of different factors, and there's not a
one size solution for all. But I think the point
that the year is that this isn't just a family issue.
This is an employee employee employer issue as well, because
(19:06):
it's hopefully they're seeing that, you know, they want to
keep their valued employees. I know, in my case, when
I was working my corporate job, I was lucky that
I had some options that I could. You know, there
is fmla sometimes paid or unpaid leave that you can
look at, depending on the size of your company, and
so there's sometimes are options. I think you could potentially
(19:28):
go part time. Maybe for me, I had to adjust
my job where I was doing a lot of traveling
and that wasn't working for me. But I could work
within my company to find in a different position where
I could be home, you know, and have more flexibility.
So I think it's a conversation that I want to
encourage people to have with their employer first and look
(19:48):
at everything with their family and if you can do it,
then then certainly make that choice. But it is not
one that a lot of families are able to make.
Speaker 2 (19:56):
Well, and it's probably not one where in every case
the employer lawyer is willing to be cooperative and helpful.
Speaker 3 (20:04):
Let's go to.
Speaker 2 (20:04):
Mimi, who's calling from outside Houston, Texas. Hi, Mimi, go
ahead with your thoughts on this.
Speaker 17 (20:12):
Yes, Hello, I'm calling regarding caregiving of small children. Right now,
I'm taking care of my husband who has Alzheimer's. I'm
also I'm also the former caregiver of a type one
diabetic who was diagnosed at about eleven months old. Uh
(20:34):
and that's hilly breastfat at that time. And I I
wish to acknowledge that these people who take care of
the little ones, the very very small ones, that type
one diabetics especially, it's very very difficult.
Speaker 2 (20:53):
Even compared to taking even compared to taking care of
somebody with Alzheimer's.
Speaker 17 (20:57):
You're saying, yes, yes, it's for a top, you know,
a very little one. Now, I think maybe perhaps today
it's easier because they might have I don't know if
they can give them uh uh pumps pumps today. But
(21:21):
back when my child was small, we could not. And
his twin, his twin had a very very rare form
of leukemia with a boma or transplant with a makeer
with child, et cetera, and taking care of him was
a whole lot easier than taking care of a type
one diabetic, and I think the type one diabetes is
(21:45):
extremely difficult, especially with little ones.
Speaker 3 (21:49):
Yeah.
Speaker 2 (21:50):
Is there is there any piece of advice, Mimi that
you would give to our audience about what they should
do if they're in a situation like you've been in.
Speaker 17 (21:58):
Well, I'm saying that now. It if you can get
them on an insulump thump as soon as they can,
that's the best thing to do. Otherwise it's very very difficult.
Speaker 3 (22:09):
Yeah.
Speaker 2 (22:10):
Well, I appreciate the call. Thank you very much for that,
Elizabeth Edderley. I mean, just thinking about somebody who's taken
care of three different people and small children, of a
husband with Alzheimer's, it's just a lot to think about,
and who could be prepared.
Speaker 13 (22:22):
For credibly, it's incredibly humbling actually to hear what people
are sharing with us. And one thing I want to
make a point about is most of us, not all,
but don't know where caregivers. When we are caregivers, and
myself included, I had to have our call center. I
called once for some information and they said, do you
(22:45):
know you're a long distance caregiver? And I said, what
are you talking about? And we consider ourselves, partners, spouses, daughters, sons, whatever, parents,
and yet we're also in this dual role of being
caregivers for that individual, and so recognizing that sooner is
(23:05):
helpful because caregiver resources exist, and so if we figured
we're out, figure out that we are one of those people,
it can really help in the journey.
Speaker 3 (23:16):
Tolliver, what is coming in at Listen to the Middle
dot com?
Speaker 4 (23:18):
Sure Kiera says, I am caring for my mom who
has severe vision laws and no longer can drive or read.
Kara goes on to express frustration because the care falls
on her because she's the closest family member with no kids,
which I think is an impression point. John listening from NHPR, says, hi,
I'm a nurse practitioner in New Hampshire and specialize in
providing home based primary care to the elderly. Making the
(23:39):
transition from home to long term care is very difficult,
and the Medicaid process takes many months, sometimes a year
or more. Then he goes on to say that sometimes
it's almost better if somebody has a medical emergency because
then they can get better long term care.
Speaker 3 (23:51):
Ah.
Speaker 2 (23:52):
Interesting, and you know to hear from a person who
does this for a living. I wonder Elizabeth Miller how
the immigration crackdown has affected what's happening here. There was
a KFF analysis that found that while foreign born workers
they actually make up one in three home care workers.
Has that been affected dramatically by just the immigration crackdown?
Speaker 12 (24:15):
Honestly, I'm not equipped to speak accurately on that, but
I do think that the crisis that we have is
that we're not paying enough for the work. And I
think if it were a more attractive job where we
were paid enough for it, we could probably fill the
jobs and keep them for Because when we've talked about
how the turnover really affects family caregivers, and that they're
(24:39):
the person training the home care workers over and over again.
So you think that you've got you got somebody who's
really a fit for your family, and then maybe they're
not paid enough and they've got to leave, or something
else happens where they're removed from the situation, and then
they've got to train and do it all over again.
So I really want to see the value of that work,
(25:00):
both for the unpaid family caregiver and for the professional caregiver,
increase so that it is an attractive job that we
can accurately and effectively hire for.
Speaker 2 (25:11):
Let's go to Jim, who's in Baton Rouge, Louisiana. Hi, Jim,
are you prepared to care for a loved win or
are you already doing so?
Speaker 18 (25:20):
I'm already doing so. And we were one hundred percent
not prepared. I was undergoing I had surgery for cancer,
and a week afterwards, I was on the road twelve
and a half hours to Oklahoma where my mom was dying.
(25:43):
And she had not told anybody how bad my dad's
set dementia was. And yeah, she passed away like a
week later, and he was living in our guest room
for over a year, almost two years. We just got
(26:04):
him into assisted living. And yeah, it's been it's it's
it's a real it's it really hurts the family, my family,
that our relationship has been. It's not been great. It's
like I've got I got an eighteen year old crazy.
Speaker 3 (26:25):
Did your did your dad resist going into assisted living?
Speaker 9 (26:30):
No?
Speaker 18 (26:31):
Albeit he thought he was going to go into assisted
living in Texas near my brother because he thought it
was a cooler place to live. But my brother just
wimped out and was not able to help at all.
He could not emotionally handle it, so dumped it all
(26:52):
on us.
Speaker 2 (26:53):
All right, Jim, Well, thank you very much for that call.
And Elizabeth Ederley your thoughts there, you know, as you
hear Jim's story.
Speaker 13 (27:00):
Well, you know, Jim, you raised so many good points,
but one is that not all family members agree, not
all family members feel like it's their responsibility, and that
can be one of the biggest challenges. It's such a
rollercoaster ride under the best of circumstances, but then you
have siblings or others who are questioning what you're doing,
(27:24):
not stepping up or getting in the way, and so
it's just really really tough on all accounts. So I
appreciate Jim you raising that issue because many people are
relating to that comment right now.
Speaker 2 (27:39):
Would you have an advice for people who end up
getting into a family struggle over this where the brothers
and sisters don't agree on what needs to happen or
who should be taking care, They should they be sharing it?
Speaker 3 (27:49):
Should it be one person?
Speaker 13 (27:51):
Yeah, and Elizabeth said this before, there's not like one
necessarily right way to do this. I do think direct
communication with everybody right from the beginning and trying to
involve people so they know what's going on too is helpful,
and then talking about it. I do think there's some
free resources. The Alzheimer's Association has an eight hundred number
(28:13):
and a wonderful website and resources and kind of pull
those together and share them with one another and say, Okay, Jeremy,
you can't help mom now, but can you contribute some money,
you know, can you help pay for this program or
and we kind of try and divvy up a bit.
So I think talking about it makes a big difference.
Speaker 3 (28:35):
Elizabeth Miller, what would you say?
Speaker 12 (28:37):
I think. I mean, family dynamics is something that comes
up all the time, right, and I you know, lived
it in my own family where I'm one of six kids,
and we've got varying strengths and weaknesses and willingness to
kind of show up, you know, in ways for my brother,
and I know it can be really frustrating to bang
your head against the wall and wish that the people
(28:58):
around you that you feel like should show up and
they don't show up. But honestly, everybody's got different strengths
and weaknesses. We all have different capacity. I know, once
I learned how to accept and just say, Okay, this
person's not going to be involved. Let me look around
and find the people who are. And I think family
is certainly one source of help, but is not the
(29:19):
only source of help.
Speaker 2 (29:20):
You know, you're one of six, I'm one of seven,
and one thing that I know is you cannot get
the whole family together for a vacation without getting into
huge fights. So one on one trips are two on two.
That's fine, but not everybody all wants to tolliver.
Speaker 3 (29:36):
You know, it is helpful.
Speaker 2 (29:38):
We've heard from somebody ordinary Americans this hour, but it's
helpful when somebody that everyone knows comes out and says
they're dealing with an issue that isn't talked about that much,
like Alzheimer's or dementia.
Speaker 7 (29:47):
Yeah.
Speaker 4 (29:47):
One of those people is former late night host Jay Leno,
who has been caring for his wife Mavis for years
as she battles dementia. Here he is on Adam Carolla's podcast.
Speaker 3 (29:56):
Jay, I got to ask you about Mavis.
Speaker 5 (29:58):
How is her health?
Speaker 19 (29:59):
How's she I'm doing?
Speaker 3 (30:00):
Okay, you know, it's okay.
Speaker 4 (30:02):
It's anybody that deals with Alzheimer's at dementia kind of
knows what this is.
Speaker 3 (30:07):
She's not in any pain.
Speaker 11 (30:08):
You know.
Speaker 18 (30:09):
You try to find a humor in this situation, you know,
but she's not walking.
Speaker 15 (30:12):
In And how's that sitting with you? I mean, you're okay?
Speaker 11 (30:17):
Is it?
Speaker 15 (30:17):
She's always been fiercely independent and I like the fact
that she needs me.
Speaker 4 (30:23):
Wow.
Speaker 3 (30:23):
Yeah, Wow. We will be right back with more of
your calls on the Middle.
Speaker 2 (30:30):
This is the Middle. I'm Jeremy Hobson. In this hour,
we're asking if you're prepared to care for a loved
one when the time comes. I am joined by Elizabeth
Edgerley at the Alzheimer's Association and Elizabeth Miller, a host
of the Happy Healthy Caregiver podcast. Our number is eight
four four four Middle. That's eight four four four six
four three three five three, or you can reach out
at Listen to the Middle dot com and again full
(30:51):
phone lines. Let's go to Susannah, who's in Buffalo, New York. Hi, Susannah,
go ahead with your thoughts.
Speaker 19 (30:58):
Oh have a and my name is Sanna. I'm actually
calling just to offer a perspective of someone who actually
is needing care from family. I am someone that has
been a disabled individual due to a muscle disease, and
I've been in a wheelchair since I was a child,
and now that i'm you know, in my mid thirties,
(31:21):
I've had my family, you know, just their lives trying
to help me. My parents have had to take their
part time job, and then my siblings have had to
work around their careers as well, you know, chansing work
from home positions just a.
Speaker 14 (31:37):
Bad way they would be able to assist me.
Speaker 19 (31:39):
I also, you know, work from home myself as a
full time job, so it's also difficult for them to
be able to be And I was mentioned like you know,
to be paid for services. Uh, this is mostly dependent
on services like medicaid. Since I do have a full
time job and I am Floyd, I don't meet like
(32:01):
the thresholds for you know, to qualify for medicaide. So
they are just having to you know, just their financial
lives and their lives overall just to help you know,
me live viable.
Speaker 3 (32:18):
What do you what do you say to them?
Speaker 19 (32:22):
Well, I am I am grateful for their help. They
are very they're attentive you know, to my knees, and
they give up a lot, you know to help care
for me, just like all caregivers do have to help
their lost ones. So I think my thought is bringing
up a little just because I do appreciate their support,
(32:44):
you know, after all these years and just helping me,
you know, live as best I can and you know,
be a projective member of society and pretty meaningfully. So
it's just to get from a lot of their a
lot of the time that they give, and that's very appreciative.
I don't think i'd ever be able to save them
(33:05):
back today.
Speaker 3 (33:06):
Yeah, Susann, I so appreciate your call.
Speaker 2 (33:08):
Thank you so much for calling in and bringing that perspective.
Speaker 19 (33:12):
Yeah, thank you so much.
Speaker 3 (33:13):
It's great to talk to you, you too, Elizabeth Miller.
Speaker 2 (33:17):
Very nice to have that perspective of somebody who is
being cared for.
Speaker 12 (33:22):
I think, you know what I loved about what Susannah
was sharing is that it was clear that there's like
a care partnership there, that they're working together. And I
honestly love the term care partner more than I love
the word caregiver. But it's already hard enough for us
to identify as a caregiver. But I think that that
is a visual of like it's a partnership, and when
you're looking at your care team of who's showing up
(33:45):
to help. You also have to look at your care
recipient as a member of that care team, because part
of our purpose as a family caregiver is to help
that person be as independent for as long as possible,
because that is going to be best for their happiness
and their health as well, which is gonna in turn
be happy and healthy for the family caregivers. So the
(34:07):
care partnership is gold and important.
Speaker 3 (34:10):
Let's get to Jenny in Kansas City, Missouri.
Speaker 2 (34:13):
Hi, Jenny, what about you? Are you prepared to care
for a loved one? Are you caregiving right now?
Speaker 10 (34:20):
I'm caring for my twenty year old son. He has autism,
and so it's just difficult to navigate everything and cost
for things like I really needed to have got guardianship
of him once he turned eighteen. So there are certain
(34:43):
things that I can do, but then there's certain things
I can't because I don't have legal guardianship. But the
guardianship paperwork would have cost me about five thousand dollars,
and that's more than I bring home in a month.
(35:05):
It's just difficult, and that's actually a lower cost than
what others have paid for the paperwork, but it makes
it so I have to try to get his permission
for things that so I'm still sort of his parent
(35:27):
the way I was when he was under eighteen, but
then struggling with what I can legally and can't legally do.
Speaker 2 (35:35):
Yeah, and he is not always giving you his permission.
Is that the inference there is that sometimes it's a
battle between the two of you to be able to
do the things that you feel.
Speaker 10 (35:46):
It's a battle because he's probably functionally mid teen, so
probably somewhere between twelve to fourteen, so he's old enough
to know that he should be an adult. So he
tells me, you know, I'm an adult and I don't
have to listen to this or whatever. But so it's just, yeah,
(36:09):
it's an extra, but.
Speaker 3 (36:14):
Well it's not.
Speaker 2 (36:15):
It's a great adult. I'm glad you brought up guardianship, Jenny.
Thank you for doing that. Elizabeth Ederley. That is something
that people who have an elderly parent with Alzheimer's or
dementia may may have to do as well. Five thousand
dollars sounds really quite obscene to me for something like that.
Speaker 13 (36:32):
Yeah, and what we really try to do and that
wouldn't work in this case is for people in the
early stages, people who are newly diagnosed, if they don't
have some legal papers put in place already for durable
power of attorney for health care decisions and finances, those
make a huge difference in being able to act on
(36:53):
behalf of someone else. And again, ideally you want to
choose that person, because you wouldn't choose just anybody's someone
who you really trust and who will act on your behalf.
And so we often try to work with families and
for both individuals, not just the person with Alzheimer's or
another dimension. We all need this because you never know,
(37:14):
and so trying to do that ahead of time. That's
not the case for Jenny in her situation with her son.
But the other thing I do want to say is
sometimes there are some lower cost legal aid available at
the county level, depending on where you live. So I
do encourage people to reach out. And Elizabeth Miller will
(37:36):
know more about caregiving for younger individuals than I do.
But for seniors, there are programs out there that may
have free legal aid, for example, And so if you're
in that situation, really let's turnover every rock we can
to see is there anything that's going to help me here.
Speaker 3 (37:54):
Yeah.
Speaker 2 (37:55):
One of the terms that's come up as we've been
talking about this is the sam Witch generation, people who
are taking care of both of an elderly relative and
maybe a child. Rebecca is calling in from Milwaukee, Wisconsin,
and sounds like he is a member of the Sandwich generation.
Speaker 20 (38:12):
Rebecca, go ahead, Hi, Yes, I have a twenty year
old daughter with something called lenox Gastows syndrome, which is
she's non verbal and has an active seizer disorder, and
I am her legal guardian and she'll be with us
long term. And at the same time, my mom had
(38:33):
a diagnosis of Alzheimer's and Parkinson's. My husband is currently
in Pennsylvania helping his father move into an assisted living program.
And so I have been both kind of navigating the
care of my own my daughter's one of three of
three children, as well as my parents, and then also
(38:55):
thinking ahead of what our future looks like with a
dependent child in a way that we won't be a
burden on our boys, because this has been so challenging
with both sets of our parents, and we will have
this extra challenge of our daughter. I've been thinking about, gosh,
(39:16):
what would it. What are our options, you know, twenty
years from now, in terms of do we move together
into some kind of assisted living facility? You know, what
is that going to look like? So I've just been
wanting to prepare to age a little better because it's
been very difficult to help both sets of our parents.
They've been very resistant to our help. But at the
(39:38):
same time calling us regularly and ask you for our help.
Don't it sort of like help me go away, come
here kind of thing?
Speaker 3 (39:45):
Rebecca.
Speaker 2 (39:45):
Let me just let me just ask you one question,
which is do you take the time to give yourself
some grace and some credit for all the work that
you're doing and even thinking ahead to how you could
make other people's lives easier in the future.
Speaker 20 (40:01):
Wow, I don't know, but I'll receive that from you. Yes,
I do think caregivers often, you know. Yeah, I do
think sometimes we forget that we're pouring out a lot
on a regular basis, and so it is very affirming
to be reminded of that.
Speaker 3 (40:21):
Yeah.
Speaker 2 (40:22):
Well, I appreciate your call, Rebecca. Thank you, And Elizabeth Miller.
It makes me think of you when you're on the
airplane and they say put your mask on first before
you help others. I mean, do caregivers spend enough time
thinking about how to make sure that they are not
going to just be completely overwhelmed by the amount of
work they're doing for somebody else.
Speaker 12 (40:39):
I mean, that is the purpose of what I'm trying
to do. And I honestly we do hear the oxygen
mask analogy a lot, but I don't love it. And
the reason why I don't love it, Jeremy, is because
there's no flashing lights, masks coming from the ceiling, someone
coming on turbulence to say, now's the time, now's the
time you need to take care of yourself like this.
This is somebody's life like they are on a roller
(41:00):
coaster or a treadmill or a hamster wheel that never stops.
And so there's no big signs like that. And so
for me, I had to figure out that I kind
of equated it to feeding a nest of hungry birds,
and that bird going to get the nourishment for my
job and my kids and my pets and my home
and my care recipient and all the things that were
pecking time from me. And yet there was this aha
(41:22):
moment of oh my goodness, if I don't go and
take some nourishment for myself. I'm not going to be
able to keep showing up for all of these people.
And that's really something that I hope is clicking with
the people who are listening, is that this's got to
be a sustainable solution and there aren't some great answers
out there. And so until we can get everything magically fixed,
(41:45):
you have to really depend on our community to help us.
And we've got to be vulnerable and let those cracks
show so that we can get that support and get
that relief and the validation that we need.
Speaker 3 (41:57):
We've got a question coming in from Baltimore, Maryland. Mona
is on the line. Mona, what's your question? Mona?
Speaker 11 (42:09):
Oh?
Speaker 3 (42:09):
Maybe back out there? She is, Okay, yeah, Mona, go
ahead with your question.
Speaker 15 (42:15):
Hi.
Speaker 21 (42:15):
So I'm still like living with my parents and thank
god they're still you know, healthy and have their mind.
But I'm wondering what are some ways I can start
bringing up this conversation of like, you know, we gotta
get your stuff together before I do, don't move out
or like go study abroad, and what are also some
things I and we as a family can start putting
(42:37):
together to get our you know, get ourselves very god
for a bit. If there was to need be a
situation in which we have to start delegating care and
and step into that caregiver, well, essentially.
Speaker 3 (42:50):
Mona, let me just ask you one question. How old
are you.
Speaker 7 (42:54):
Something?
Speaker 3 (42:55):
Twenty three? Okay, thank you for that call. Let's get
an answer. Elizabeth Edgerley, Uh, what do you say, Mona?
Speaker 13 (43:01):
Yeah? Mona, you know what I was thinking of the
conversation with you and your parents, say, you know, I
just heard this radio show talking about how important it
is to have this conversation with your parents, and also like,
you know, I want to know what you want. Have
you thought about this and start the conversation. You may
(43:21):
not be successful the first time you try, so if
it's like why are you asking me that, I recommend
you know, you keep trying and you try different ways,
and you go a little bit at a time, and
also include yourself. Although at twenty three, you know, people
might say, oh, you don't need it, but we all
need to plan ahead for the just in case something
(43:45):
were to happen. So I love that you're asking this question,
and I do hope your parents are happy to have
you ask that question, because it shows tremendous compassion and
forethought that you want them to have it the way
they want it, if at all possible.
Speaker 2 (44:01):
So I love that Gary is calling in from Las Vegas. Hi, Gary,
Are you a caregiver for anyone right now?
Speaker 5 (44:11):
Yes, I am. I'm a caregiver for my one hundred
year old mother. I'm seventy, and fortunately it's gone very
well for myself, my sister, even my ex wife helped
a bunch.
Speaker 3 (44:29):
And why do you think it's gone well?
Speaker 5 (44:32):
Well? I guess a lot of reasons. My mom had,
my dad had left my mom sufficient finances, so when
it was time to go into assisted living, you know
that there's no financial issues. We planned in advance over
the years as she got older, she began myself and
(44:55):
my sister I live in the same town as Mom,
and so we began to put her various accounts in
my name so I could control that all her various
investments all went into one like Charles Schwab account. So
it wasn't a you know, a mess. You know, when
(45:18):
it was time to sell her house, that went well,
The proceeds right went into the account. Again. I was
very fortunate. Her health was good. Her health is still
good today, you know, at a one hundred years old. Yes,
she has a bit of dementia and she doesn't see
or hear real well. You know, she has a great attitude,
(45:40):
so again, very fortunate. She's very positive. So it's just gone.
And I don't mean to gloat. And I know most
people that have called in have you know, have had
much tougher situations and we've just been very fortunate. But
there's been some good planning, you know.
Speaker 2 (45:57):
Also, Hey, I think that's a great call to end
the hour on because you know it's the holiday season, Gary,
and I appreciate you ending us on a nice note
about how well things are going. And and yeah, just
so thank you so much for that, Elizabeth Miller.
Speaker 3 (46:12):
Before we do go.
Speaker 2 (46:13):
What would you say is the biggest piece of advice
you would give to our listeners who are not yet
caregivers but want to do something right now so that
they are prepared when that time comes.
Speaker 9 (46:27):
Yeah.
Speaker 12 (46:27):
I think that we're all going to be caregivers at
some point. So if anyone's listening and you're not in
that position, and I think it's yeah, thinking about what
you want to be true, having the conversations about yourself
and your family members and knowing what your values are
and what's important to you, and you know, the conversations
(46:49):
are everything, and so if you can get in front
of that proactively, you're going to have more options and
choices involved. I know sometimes you do. You kind of
expect and see it coming and you're probably thinking, maybe
is this what are mind? Some of these responsible is
going to come to me? You know what would happen
if and sometimes it doesn't go as planned. Oftentimes it
(47:10):
does not go as planned, and so you can make
the best plans, but you still need the community support.
Speaker 3 (47:16):
Elizabeth Dridley, what would you say?
Speaker 13 (47:19):
Yeah, I think you know, around Alzheimer's specifically, I think
trying to learn as much as you can. I think
I've said that a few times. There's some great resources
the Alzheimer's Association, for example, we just launched a new
app called My All's Journey and it's for care partners
(47:39):
and for people with the diagnosis. Because what we hear
from so many individuals is they get a diagnosis and
they don't get anything else. They don't get any referrals, treatments, help,
and so we thought, okay, we can help a bit
with that, but people need to reach out and get
that help to.
Speaker 2 (47:58):
Try to get as much information as they Yea and
Elizabeth Ederley, Senior director of care and Support Programs and
Services at the Alzheimer Association and Elizabeth Miller, certified caregiving consultant,
host of the Happy Healthy Caregiver podcast.
Speaker 3 (48:10):
Thanks so much to both of you for joining us.
Speaker 2 (48:13):
Thank you for this conversation, and you can continue this
conversation by calling us or emailing us anytime.
Speaker 4 (48:19):
Tolliver Yeah, our number is eight four four four Middle.
That's eight four four four sixty four three three five three,
or you can go to listen to the Middle dot com,
subscribe to our free weekly newsletter which is now on substack.
Speaker 2 (48:30):
And by the way, we can see what people click
on on the substack newsletter and Tolliver. I'm happy to
tell you that your Tolliver's tidbits links are some of
the most popular things on there, so thank you for that.
Speaker 3 (48:42):
People can check.
Speaker 4 (48:43):
Out It's Bigger and bigger Man the Middle.
Speaker 2 (48:45):
It's brought to you by Longnook Media, distributed by Illinois
Public Media Interbana, Illinois. Produced by Harrison Patino, Danny Alexander Samburmasdas,
John barth Anaka Deshler, and Brandon Condritz. Our technical director
is Steve Mork.
Speaker 3 (48:57):
Thanks to our.
Speaker 2 (48:57):
Satellite radio listeners, our podcast audience, and the hundreds of
public radio stations that are making it possible for people
across the country to listen to the Middle, I'm Jeremy Hobson.
Speaker 3 (49:06):
Happy holidays. I'll talk to you next week.
Host
Jeremy Hobson
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