June 12, 2024 • 40 mins
On this episode of Advice From Your Advocates, Attorney Bob Mannor sits down with Senior Care Advisor and Advocate, Bill Cohen. Bill shares his own, personal journey as a caregiver for his mother who had Alzheimer's disease. He became her advocate and primary caregiver, handling her financial, legal, and care issues for 10 years. After her passing, he became a caregiving support consultant and advocate, turning his personal loss into his passion.
Both Bob and Bill emphasize the importance of a holistic approach to caregiving, bringing together different entities and professionals to provide comprehensive care. They discuss common advice, support, resources, and referrals, and discuss how Bill helps families manage the care of their loved ones with dementia. Bill also highlights the impact of choices and environment on the development of dementia.
The conversation focused on the importance of lifestyle, exercise, and exposure to chemicals in reducing the risk of dementia. It emphasized that dementia is not an inevitable part of aging and that there are ways to lessen the likelihood of experiencing it. For example, lack of sleep and stress are significant factors that can negatively impact caregivers' health.
The conversation also highlighted the need for comprehensive legal planning, including advanced directives and additional language in legal documents for dementia cases. Bill's role in and the importance of elder mediation was discussed as a way to help families come to agreements and avoid court battles. The importance of self-care for caregivers was emphasized, including support groups and holistic care teams. If you are a caregiver of a loved one or a patient with dementia, you do not want to miss this episode of Advice From Your Advocates.
Host: Attorney Bob Mannor
https://www.mannorlawgroup.com/staff-profiles/bob-mannor-cela/
Guest: Bill Cohen CSA
https://cohencaregivingsupport.com/services
Executive Producer: Savannah Meksto
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to Advice from your Advocates.
I'm Bob Manor, I'm a certifiedelder law attorney in Michigan
and today we have a veryinteresting guest, bill Cohen.
Welcome, bill, thank you.
Speaker 2 (00:12):
Honored to be here.
Thank you.
Speaker 1 (00:13):
So I've been excited about this podcast and learning
more about your advocacy.
Bill, just tell us a little bitmore about who you are and why
you're involved in the dementiaspace more about who you are and
why you're involved in thedementia space, Sure.
Speaker 2 (00:31):
So what I like to say is that if you had asked me
about maybe making 20 years agowhat was going to transpire with
my mom and what the journey wasgoing to be with her, and I'd
be doing what I do today andtalking to you today, I'd say
you're crazy.
Probably couldn't make out thatscenario.
It's pretty unbelievable.
So back in the, I'll tell you areal quick version.
My mom was living in Biloxi,Mississippi I'm not from there
and she lost her home to Katrina.
(00:52):
Some of the things we sawbefore and after, some of the
things we experienced, but Ibecame her advocate, her primary
caregiver and helping take careof all her different financial,
legal and care issues forapproximately 10 years.
She passed away about 11 yearsago at age 83.
(01:13):
And I thought I was going to domore volunteer work, came
across this concept of acaregiving support consultant,
and so it basically turned mypersonal loss and my pain into
my passion in my encore career,you know it's interesting that
you have tied Hurricane Katrinainto that.
Speaker 1 (01:32):
Did your mom experience some memory loss
before the hurricane?
Speaker 2 (01:36):
That's a great question.
We were seeing some things thatwere concerning I don't know
how much was memory loss, butshe was increasingly agitated.
Okay, not taking care of thefinances, not taking care of the
house?
She was in the carrier role formy late stepfather, who had all
kinds of conditions.
He was on or off hospice and wethought, oh, is mom just
(01:59):
getting tired?
Is she stressed?
Is?
Speaker 1 (02:00):
she getting older.
Speaker 2 (02:01):
Maybe if and I did take her to a doctor and got her
on whatever medication wasavailable at the time, it hasn't
changed much.
And we were thinking, if mystepfather passed away or went
into a care committee, would mombounce back?
No, we never got thatopportunity Because what did
happen in August 2005 in theGulf Coast Katrina completely
(02:22):
swept away their home down tothe elevation in the storm, and
the trauma of seeing it goneaccelerated in it and
exacerbated whatever was comingout we realized later it was
Alzheimer's.
Speaker 1 (02:35):
So okay, so Alzheimer's.
I was going to ask you becauseI know that's one of the
questions I had for you laterwas the different types of
dementia.
Of the questions I had for youlater was the different types of
dementia.
As you know, dementia is acategory of diseases and it
doesn't, you know, too often weget a diagnosis of dementia and
my next question is okay, great,what type of dementia?
(02:56):
And so what they believe isyour mom was experiencing
Alzheimer's type dementia.
Is that right?
Speaker 2 (03:01):
Exactly, and I'd like to say that because when I talk
to my clients and I talk peoplein support groups, that file is
very normal for a lot of uswith a person with declining
cognitive disability or thecarrier.
I'd say I did it twice, and onetime was before the trina, and
it's normal, I'll be fine, she'sokay, uh, the other time was
when she had to go into memorycare isn't it too soon?
(03:23):
isn't there an intro step?
But we looked at the symptoms,the behaviors, the signs of
Alzheimer's, like Alzheimer's,but we didn't need a formal
diagnosis, an autopsy.
All the time we knew what shehad.
Speaker 1 (03:37):
Yeah, no, I get that.
And so for those that aren't asfamiliar with the concept of
dementia, is that we're notalways, in fact, basically,
doctors can't tell us 100% forsure what type of dementia it is
until there's an autopsy.
But we have a pretty good idea,right?
There's a pretty good ideabased on the symptoms, things
(03:57):
like that, and various tests andvarious tests.
I'll tell you my personalstories.
When my dad went into a medicalprocedure and I was there all
day and I noticed this was thefirst time I noticed it with my
mother that there was asignificant deficit in her
ability to comprehend what wasgoing on around her, and I
(04:20):
talked to my family.
Like you say, people tend to bein denial.
I talked to my family about itand they're like no, no, no,
it's fine, everything's fine,it's all going to be okay.
It was just the stress of theday.
I said I'm not so sure aboutthat, you know.
And so I think what you'resaying is it's very normal for
families to be in a bit ofdenial about it and not, you
(04:41):
know, really try to avoid theacknowledgement of it, you know,
sometimes too long.
So tell us a little bit moreabout your journey and how you
got to be what you're doingtoday.
Speaker 2 (04:58):
So I'm originally from New England.
I went to school in Boston fromoriginally from Hartford,
newark Vacation.
From my high school I'm a NewEngland guy, even though I've
been gone for many years.
I had a business degree atBoston University.
I ended up in the hotelbusiness, I was in financial
services and I was working forthe state of Oregon, and it
sounds like none of them haveanything to do with the other,
(05:20):
including the one now, but thecommon thread is customer
service and helping people.
So after mom passed away and I'dalready gotten another business
degree and I dealt with all thelegal stuff and the financial
stuff and real estate, I thoughtI was just going to do more
(05:41):
volunteer work Because a fewmonths after she passed away I
became the facilitator of agroup I was attending for a few
years.
Wasn't expecting that, but Iwas doing the Walked In at
Alzheimer's.
I was going to the Capitol andadvocating for more research,
funding that type of thing.
Then I came across this conceptof a caregiving support
consultant and I did a lot ofresearch and reached out to
(06:03):
everybody I could find inLinkedIn in the industry and
made a lot of connections, builtmy network and learned a lot.
So I started a little overseven years ago.
I started my business.
I'm a little different fromother practitioners in the
industry, which is why a lot ofpeople haven't heard of me or
what I do is that we're close toa lot of things but we're not
that specific Provide advice,support, resources, referrals,
(06:27):
help people take care of theirloved one, manage the care,
practice self-care andpreservation or preventive care,
and I help put together a team.
I put together a plan.
I like to say I don't competewith anyone.
I collaborate with everyone,including people in your,
because these are all pieces ofthe puzzle.
(06:48):
We don't work in silos.
We should be all coordinating.
I like to use the term thatisn't used in elder law, but it
is our elder care.
But in child care is wraparound.
We'll get everybody together onthe same page and help take
care of the loved ones who can'ttake care of themselves, and I
work that way instead of oneperson, and they take care of
(07:11):
the housing and that's all.
I work with the board ofoperators, and that's part of
the reason why I'm a certifiedsenior advisor to the CSA.
Speaker 1 (07:20):
After my name is.
Speaker 2 (07:21):
We take a holistic approach.
We look at that broaderperspective and take care of the
, our most vulnerable population, their, their care, their
safety and age, as as well aspossible.
So I like those are people Icollaborate with too.
Speaker 1 (07:40):
I like that.
I like the holistic term.
It's funny, I use that also andit's very true about both of
our work that both you and I do.
It's very holistic and I alwaysthink it's funny because you
know, we're both old enough toknow that.
You know sometimes that wasused as more of a hippie kind of
(08:02):
you know, commune type of athing, but it's important to
note that that is a real thing,that most of the time the
experts that you're working withare only looking at that narrow
slice.
Even lawyers, you know people,social workers, even discharge
planners, you know they're alllooking at that sort of narrow
(08:22):
slice and somebody needs to lookat the big picture right.
And that's the idea of theholistic concept here.
So talk a little bit more aboutwhat that means to be a
holistic service provider.
Speaker 2 (08:36):
Kind of funny.
You mentioned the kind of thewoo-woo hippie thing.
Is that for?
a while I was in a group calledHolistic Chamber of Commerce and
it was mostly the alternativetreatments and practitioners and
it was a bit of oh, nice people, absolutely.
So what I try to do is and I'mgoing to give a story I think
(08:56):
it's a good way of illustratinghow I can help people because
and I think you saw that I amalso a trained elder mediator
and this is almost a combinationof my two hats.
So this woman is originallyfrom Portland but she's living
in UK London for about 30 years.
Her mother is in a carecommunity here in Portland and
(09:21):
she was being neglected by herstepfamily by the care community
.
It was reported to AdultProtective Services when it
should have been probably thecare community that was reported
.
I wasn't doing the job right.
Her own doctor was neglectingher.
To make a long story short isthat she found me through the
Alzheimer's Association, thedaughter we got together.
(09:42):
My mom was stuck in memory careand she shouldn't have been at
that time.
She wasn't getting the care andattention needed, and so we had
meetings and involved all thoseentities plus a house call
geriatric physician among thepeople, the housing person and
we, and of course, the HomeHealth Care Agency as well and
(10:03):
got mom back on track, got herthe health, got her the
attention we need and got her onthat mimicry unit where she
shouldn't have been Now, to makea long story short, I've been
working with that family forabout 18 months now and various
things have happened, as mom hashad falls, hip fractures,
declining cognitive.
but we continue to work in thatholistic approach, bringing all
(10:27):
the different entities in tomake sure that mom is safe and
has whatever quality of life ispossible for whatever she has
left.
And I can't count how manytimes the daughter says thank
you, thank you, thank you, thankyou.
I don't know what I would havedone if I hadn't found you, so
it's a challenging situation butvery gratifying.
Speaker 1 (10:47):
So you know, in a minute I want to get back to you
.
Know you're telling about yourmom and how you kind of came
into this, but I want to go downthat path first about, ok, what
exactly it is that you do andhow do people find you.
What's the initial?
So I understand why people findme right.
They are often looking for mebecause they're not sure how
(11:11):
they're going to pay for care.
They're not sure if they havethe right legal documents in
place.
Now we do a lot more than that,right.
We do advocacy, we do thatholistic approach to things.
But I understand why there'sthat motive to say, okay, we're
not sure how we're going tohandle this financially and
legally.
How do they find you and whatis that sort of initial first
(11:33):
step?
Speaker 2 (11:35):
Well, I'm going to use your phrase depends, right,
that's funny.
Speaker 1 (11:39):
For those that are listening, that's the classic
legal answer.
Every lawyer you can answer anyquestion with that depends
Right and that's one of thethings I don't do.
Speaker 2 (11:49):
I don't practice law.
I'm not a financial advisor.
I can't give specific financialadvice.
I do hands-on caregiving.
However, I've been through thelegal side keeping mom eligible
for Medicaid.
I used to be in financialservices, so I talk in general.
I can help people with theirlong-term care policy because I
can read it and I understand itand I do new companion work.
(12:09):
I will spend time with clients,loved ones with dementia, like
that woman I was just talkingabout.
I go to visit her in the carehome.
So people either it's word ofmouth I'm very involved, like my
local chamber and otherorganizations.
They can find me on my website.
I'm very active on social mediaon all platforms, even TikTok.
(12:31):
You won't see me dancing, but Ido do videos there.
That's great Me too.
Speaker 1 (12:35):
So I'm a video campaign.
Speaker 2 (12:37):
Usually at some point they will get on my website or
they will have my uh calendarcalendar to schedule an
appointment.
Initial conversation.
Whether it's half hour hour, Idon't care.
Whatever they need, we'll talk,see what their needs are.
Uh, regardless of affordability, I'll let them know very
clearly.
I either work in an hourlybasis 75 an hour or uh for a
(13:02):
minimum two.
But, as we know, dementia inparticular is a long term and
very complicated and sometimeslong distance because families
are sprouting all over the place, like the case I was talking
about, which was an extreme.
So once they're getting beyondtwo or three hours, the monthly
approach is better.
It's $300 a month and it givesthem about five, six hours and
(13:26):
I'm very flexible.
I can spend anything.
I try to keep them veryaffordable.
Speaker 1 (13:32):
So that's interesting that you mentioned the long
distance when you were dealingwith this with your mom.
Was it a long distance issue?
Speaker 2 (13:40):
Part of it.
I almost said it no.
Speaker 1 (13:44):
And you're able to help people long distance too.
Speaker 2 (13:46):
Right and the pandemic made that really
explode because people werelooking for support everywhere.
Right so being able to workonline for a lot.
But yeah, I was in Portland.
She was in Mississippi with acontinuous storm.
Then she was evacuated with astepfamily to North Carolina and
(14:08):
then one aunt in Delray Beachbefore I moved her out here.
So yes, I was doing thelong-distance caregiving, the
travel to check in on heroccasionally before I moved her
out here, which we did beforewhile she was still ambulatory
and had enough cognitive abilityto go along with the trip.
Speaker 1 (14:26):
So I always like to make it clear to our listeners
when we have guests, andsometimes they're very
interested in saying oh, I wantto.
You know, could I work withthat person?
You can pretty much work withanybody in any area, right?
Speaker 2 (14:39):
Absolutely.
Yeah, like Grace is a womanmostly in New England, but her
family is in South Florida andshe's from the Dominican and
actually in her podcast she sayswe need to talk.
Speaker 1 (14:51):
My father has dementia, so we're helping that
family all over the place aswell ask you more about your mom
because, um, you know, this issomething that's very difficult
for families and for people thatare experiencing with this with
their parents.
Um, and it's really easy togloss over things.
(15:14):
You start seeing some red flags, you start seeing some things
and it's, it's just really easyto, um boy, ignore, uh, the
problem because it seems likesuch an avalanche that might be
coming.
So tell me a little bit moreabout you and your mom and what
the symptoms were, what thethings were that you saw that
(15:36):
you realized you had to step in.
Speaker 2 (15:38):
Sure.
So again, while she was tryingto take care of my late
stepfather, we saw she wastrying to keep him alive.
I remember hearing about itwhen she was pounding on his
chest and giving him thenebulizer and inhaler and all
this stuff.
So it was really wearing downon her.
But yeah, as I mentioned,paranoia, agitation.
(16:01):
She was originally aprofessional artist, including
printmaking, moved over intocollage and other media, and she
was also interestingly, left myright brain thing that she was
the person who handled thefinances.
And in the 1980s, in her 60s,she was an early adopter not
(16:21):
just of a computer but of a mat,which was very infrequent at
that time.
So once she was unable to dothose things and do her art as
well, these were big reasons forconcern.
That's why we did get her to adoctor and we were hoping that
she would bounce back, but wedidn't get the opportunity.
(16:42):
Again, that trauma and what'sthe interesting thing is that we
usually hear about and I don'tknow if you were going to ask
about this, but I'd love to talkabout it because the research
is coming a long way.
We always hear about age andand we hear about genetics,
heredity, right.
However, no one else in thefamily has Alzheimer's Two.
She was in her early 70s, aboutmy age, when she was first
(17:06):
showing signs and for people whodon't know it, alzheimer's and
other dementia frequently willbe developing for many years
before it even becomessymptomatic Right.
Symptomatic right and in hercase, she's living in an area
where toxins, pollution andchemicals in the air, foil and
water, right mold and mildew.
(17:27):
In that humidity she used tosmoke, barely walk the dog, let
alone any other exercise.
She's in the caregiving roleand she's socially isolated few
miles off the coast.
Plus with her artwork for manyyears, the intaglio process she
was etching it to metal plaguesand putting it into an acid bath
.
Oh boy she is supposed to child.
(17:48):
But the lesson is that and theAlzheimer's Association of
Research is showing this moreand more- Absolutely.
With lifestyle choices andenvironment.
These are huge factors and Ithink it's why we're seeing more
early onset, younger peoplegetting all those interventions,
not just old people.
Speaker 1 (18:08):
We recently had Dr Natalie Edmonds on the podcast
and she talked about that thatstudies show that there is a
percentage that is almostinevitable that it's based on
genetics, but a much largerpercentage is partially based on
genetics and then partiallybased on environmental issues
(18:32):
and decisions and lifestyle andthings like that.
But the largest percentage isactually lifestyle and and
exercise and uh and exposure to,uh, you know, chemicals and
things like that.
And and I found that veryinteresting that for those of us
that are worried about this andI understand the issues there
(18:53):
are ways for us to make it lesslikely.
I I've talked to so many peoplethat think that, oh well, if it
happens, it happens, it'sinevitable.
It's not necessarily inevitable.
It is for a small percentage ofpeople, but for most of us,
there are things that we can doto lessen the likelihood that
(19:13):
we're going to experience thistype of dementia.
Speaker 2 (19:17):
And I'm sure you know that dementia is not a normal
part of aging.
It is not inevitable.
However, as you get older, yourrisk level does increase and
one of the things and you couldmention this to you to got a lot
of the boxes is also gettingyour sleep, getting a good
night's sleep and clearing thattongue-dodgy brain, the towels
(19:38):
and tables and that type ofthing Very very important.
Speaker 1 (19:41):
I can't tell you I know I'll be honest with the
audience I do struggle withsleep.
It's one of the things I talkto my clients a lot about,
because often what we're seeingis we have a caregiver spouse
and then we have a spouse withdementia.
Well, what's the problem withthat?
The caregiver spouse often isnot sleeping, that they're
(20:01):
worried, that they have all theweight of the world on their
shoulders, that they're worriedabout the spouse with dementia
getting up in the middle of thenight, maybe wandering, things
like that, and they're notgetting proper sleep.
And, frankly, that's a recipefor disaster.
You know, the statistics tellus that the caregiver spouse is
most likely to die first.
Well, that's a lot because ofsleep.
(20:22):
Like you mentioned, the lack ofsleep, the stress, the pressure
that's on them.
Speaker 2 (20:27):
Yeah, I don't know if you've heard this statistic.
It's a rough number, but fordementia caregivers over 70
years of age, two-thirdstwo-thirds pre-deceased the
person they're caring for.
Not only is that tragic butit's preventable If people go to
the wrong doctor, get theirsleep, eat better, that type of
(20:49):
thing.
Speaker 1 (20:50):
We had a guest recently that was talking about
how they offer therapy servicesfor people with brain injuries
and neurodegenerative diseaseand things like that, and he was
talking about how many familiesbecome very you know, secluded
when there's a dementiadiagnosis.
(21:10):
In other words, they maybe theyget the diagnosis, maybe they
get the right, you know, they goto the right doctors but then
they just kind of go home andjust kind of seclude themselves
and don't get the therapies thatare available, don't get the
right, you know they go to theright doctors but then they just
kind of go home and just kindof seclude themselves and don't
get the therapies that areavailable, don't get the you
know, occupational therapy orthe speech therapy or the
services for the family thatmight be available or things
like your services, and that itcould not only extend the life
(21:35):
of the caregiver spouse, notonly extend the life of the
spouse with dementia, but givethem better quality of life for
the time period that they haveleft.
And that many families I don'tknow if it's a matter of they're
embarrassed or pride orwhatever it is, but his
experience was that manyfamilies choose to just kind of
(21:58):
seclude themselves once you getthat diagnosis of dementia and
that there's so many things thatcan make life better for both
partners, for the person withdementia, for the spouse, for
the family, for the kids,including things like the
services that you offer.
Speaker 2 (22:15):
And I may be preempting with your questions,
I don't know, but like one ofthe first things people should
do, and besides making sure yourloved one is safe, it's also
making sure all the legal is inplace.
Yeah, our return to theadvanced directive as needed
wills, trusts, et cetera,because if you can't have access
(22:37):
to the doctor's, you can't beadvocating for your loved one.
You're going to be in trouble.
Speaker 1 (22:43):
That's a good question.
I'll add a little bit to that.
So it's almost like you'reasking me the question on this.
And so there is a thing that alot of families think oh well,
you know, in 1990, we went to alawyer or we downloaded some
documents or whatever.
And frankly, that's notprobably okay, that's not
sufficient.
(23:03):
When it comes to things likedementia, we have to be not only
have things up to date andcurrent, but there's some
additional language that we needin there.
And if we wait too long andI'll explain that in a second,
but if we wait too long theproblem is it could get to the
point where they're not legallycapacitated to be able to sign
(23:25):
new documents.
So if you have, sometimespeople say, well, just make sure
you have your power of attorney, make sure you have your will,
things like that Problem is, youknow it might not be enough.
You know, not every will iscreated equal and every power of
attorney is created equal, andsometimes with dementia we need
to have additional authority,additional language in there.
And so many times people thinkyou know.
(23:48):
They're told oh, you have powerof attorney, Okay, great, Well,
you might need to update it onthe early stages of dementia
before it gets to the pointwhere you can't, before it gets
to the point where you can't.
So, specifically, what do I meanby that?
There's a thing calledextraordinary powers, extra
authority.
Why do we need extra authority?
Well, because the person withdementia is likely going to get
(24:11):
to the point where they're notable to authorize or give
permission to do the thingsnecessary to protect the family,
to protect themselves, totransfer assets, to do things
that are going to be able toallow them to qualify for
government benefits, and so weneed to have that in writing and
we have to have clarity on that.
And most lawyers don't includethat in your standard power of
(24:31):
attorney.
Most lawyers don't include thatin their standard legal
documents, because most lawyershave never filed a Medicaid
application.
They've never filed a veteranbenefit application.
So I don't mean to uh, you know, overtake the the conversation
here, but you brought it up andI think it's really important
that people understand.
That is a clear issue.
It's not just about you havethe documents that put you to.
Speaker 2 (24:52):
Your documents have the right language in them now
that's definitely job one, jobone, a one of the two, and I I
always refer to an elder lawattorney because they do
specialize in those subjectmatters.
I was going to mention all youwere talking about, the
withdrawing, etc.
That's where I know, like yoursleep, it's socialization,
making sure you, your eyewear isup, is current, you're getting
(25:16):
your hearing aids if you needthem and keep them programmed
and charged, because if youdon't, you're just your hearing
aids if you need them and keepthem programmed and charged,
because if you don't, you'rejust going to withdraw.
They're going to withdraw.
You're going to the world and itjust accelerates, exacerbates
the situation, which is verytragic because, like you said,
if you do things, these things,early enough, when you see those
first signs, it would be easierto maintain some quality of
(25:39):
life for as long as possible.
I want to do a quick, quickreference.
When we're talking about sleepetc, and the burden of the
people of the um taking care ofthe loved one, is that I got
some studies from a localdispensary about studies, early
studies, about using dbd and orthc, yeah, or the person with
(26:00):
dementia, and because they wereless agitated, etc.
The caregiver, uh, burden wasthe lesson.
So it's a win-win both ways,you know.
Plus that's another thing tolook at.
You may want to go to yourlocal dispensary.
I'm not advocating for anythingin particular, but even a
little bit of thc along with cbdcan help with sleep.
Speaker 1 (26:22):
So something, maybe one second, you have to look at
your other many patients, ofcourse yeah, so of course, talk
to your doctor on that, right,you know you'll agree with me on
that.
Talk to your doctor.
But it is one of those thingsthat unfortunately becomes
controversial and maybe itshouldn't be.
Maybe it's one of those thingsthat you know it just carries
whatever political baggage andwhatever else.
(26:43):
But the reality is, if this issomething that can improve
quality of life for our elderpopulation, it's unfortunate
that it has this baggage behindit.
But again, we're not givingmedical advice.
We're just saying talk to yourdoctor and maybe incorporate
this as part of your, your planyou know, unfortunately big
pharma doesn't have all theanswers yet right, uh, so I I
(27:08):
can't agree with that more.
You know, a lot of times theanswer for whenever there's a
any, so two problems.
Number one is often thediagnosis is generalized
dementia.
Well, that doesn't tell us much.
Dementia is a category ofdisease.
It doesn't tell us which typeof dementia it is.
And then, secondly, wheneverthere's this diagnosis of those
(27:29):
drugs, acknowledge that it onlyhelps a percentage of the people
, a lot of people, that itdoesn't help everybody.
Speaker 2 (27:47):
And those medications have been out on generic for 20
years already.
They haven't come up withanything better, which is quite
unfortunate, but yeah.
It'll help with some temporaryrelease.
That's about it.
So I want to go back tosomething you were just talking
about, which is partly acatalyst for my doing what I'm
doing.
Is that rightly so?
(28:09):
The emphasis on most diseasescancer, heart, dementia is on
the person with the disease,because they can't take care of
themselves.
They may not be able to maketheir own decision.
The problem is and this is whatI found 20 years ago and it
hasn't improved much is who'ssaying to the caregiver how are
you doing?
What support and resources doyou need?
(28:30):
And people feel let down.
If they even get a diagnosis,specific or otherwise, they say
where's the plan, where's thetreatment?
Speaker 1 (28:39):
Where's the that's a big deal and, frankly, from my
perspective, and how we workwith families is that's the
thing that we have to address.
When families come to me, a lotof times they're saying, oh,
(28:59):
this is about mom or this isabout dad, and I say, well, yes,
of course we've got to makesure that we've got a plan for
the person that has the dementiaor some form of dementia.
We also and just as importantis we have to have a plan for
the caregiver spouse, the otherspouse.
Now, obviously, if it's asingle person sometimes it's the
(29:20):
caregiver daughter or thecaregiver son or the caregiver
grandchild but the thing is thatwe have to have a plan for them
too, because you know, if theyget sick, if they break their
hip, if they fall down, if theyhave a stroke, if they die, the
entire plan falls apart, and soit is just as much about the
(29:41):
caregivers as it is about theperson with dementia.
Hey, bill, tell me a little bitmore.
I know one of the things thatyou do is elder mediation.
So tell us a little bit moreabout what elder mediation is
and how do you participate in it.
Speaker 2 (29:53):
So, as many of us know, some families can't even
decide on ordering pizza, letalone caring for their loved one
.
They're divided.
They may not be all on the samepage.
Some people may have ulteriormotives or other agendas.
That's unfortunate.
I was lucky.
I had very good support from myfamily.
They may have had differentopinions, but we all cared about
(30:15):
what was going on with my mom.
Elder mediation is when familiescannot come to an agreement.
They're at an impasse and theyneed probably an objective or
neutral third party to help themkeep talking, come to an
agreement.
I don't make the decision forthem.
I can't fix the family problems.
(30:35):
I'm not a therapist, but wewill keep talking and and try to
help them come to thatagreement.
They can all live with realquickly.
It was with a family of fourdifferent cities, three
different states around thenorthwest.
They're divided down the middlebetween the four of them about
the terror and where and how momwill be taken care of, and we
got on the calls.
I remember one of the siblingssaid at one point well, at least
(30:58):
we're not yelling at each other.
That was a win.
And one of the siblings at onepoint the one who hired me at
one point went off camera.
He was off mic.
He says I'll be listening, sowe kept talking kept going, came
to an agreement.
He wasn't happy about it, aboutthe outcome.
They told me later you did yourjob and gave me a great
(31:20):
testimonial so that kind ofsituation and mom is doing well
ever since.
It's very gratifying.
It is a way, with all duerespect to your profession, to
keep you out of the courts.
It's not about the attorneys,it's about them and again, it's
just with me and them.
I usually will do a group calland then maybe individual
(31:41):
conversations and then come backas a group and try to come to
that agreement.
If they will settle on yeah,which is great.
Speaker 1 (31:47):
And you know I take the try to come to that
agreement.
They will settle on yeah, whichis great, and you know I take
the position of we're only goingto help families that can come
to that agreement.
I'm not going to get involvedin that.
You know court battle whereeverybody's arguing and who
should be guardian, and you knowall of that.
I simply will not take thosecases and I know that that's a
(32:09):
line in the sand that somepeople are upset by.
But the bottom line is I ambest at helping families that
are willing to work together.
Now, like you, sometimes itdoesn't mean that the family all
agrees.
Before we have to have thatkind of family meeting where
everybody sits down and we all,like you said, sometimes we
disagree and commit, disagree tothe.
(32:31):
You know that you said you'rethe person that hired you wasn't
real thrilled with the answer.
But if we can commit to a planand that's what's important is,
you know, allowing the family toget through that, to allowing
the family to have that, youknow, and I here's my assumption
my assumption is uh, I at leastwalk into the meeting with the
(32:56):
uh assumption that the family isall well intentioned but
they're getting voices fromeverybody.
They're getting voices fromculture, from movies, from their
barber, from their neighbor,from you know, from whoever uh
telling them that this is theway it should be.
Uh, when we have a a parent incrisis, when we have a parent
(33:18):
with dementia, there's lots ofpeople willing to give advice.
Some of it's bad advice it isand so the idea is that you know
to come together instead ofcome together in screaming, come
together and say, OK, we've gotto look for what's best in this
situation.
Find that light at the end ofthe tunnel.
Speaker 2 (33:39):
And that's in the best interest of their person,
who needs the attention.
Speaker 1 (33:44):
And it's great that you do that because you have an
advantage over me in that whilewe do that also, I have to worry
about attorney ethics andconflict of interest, and so as
soon as it seems there'sconflict of interest, I have to
say sorry, I can't help youanymore.
Where you're able to still talkto the family and try to move
(34:07):
forward to a conclusion wherethey're all going to be in
agreement.
As soon as somebody says I'mgoing to hire a lawyer, we're
fighting about this, I have topretty much shut it down and say
, okay, then I'm out because Ican't be involved in the
Catholic interest.
As a non-lawyer, you're able tomediate some of these things in
a very positive way.
Speaker 2 (34:27):
However, I still have one, as you say, a line in the
sand.
If everybody does not agree tomediation, how did it happen?
Right?
Speaker 1 (34:37):
Right, good point.
So another thing that you do,and I think is very interesting
and very important, iscollaborating to create a care
team, you know, coming up withthat whole holistic team to
figure out how do we moveforward.
Talk to me more about that.
Speaker 2 (34:54):
So and I gave one example earlier and it's a real
good one Of course, it againdepends upon the situation.
Not everything's necessary Thenwe already have the legal
documents in place to have areview.
So when I'm talking to people,what are your needs?
What are your biggest concerns?
I'm looking at, what can webring in to the team to help
(35:24):
collaborate and talk about thevarious issues?
That's affecting not just theperson with dementia or other
condition, but also the family.
So, because everybody isinvolved, no matter where they
are, what they do, how much orhow little, they're a carrier,
they're part of the caregivingteam, and that can be handling
finances, that can be makingcalls or purchases, that can be
coming in for a week and givingrespite to the primary carrier.
There's a lot of different waysthat can work and that's what I
(35:45):
help them come together.
It's not a matter of I'm toofar away, I'm too busy, I can't
deal with it.
No, there aren't always thingsthat you can do.
Speaker 1 (35:56):
Well, Bill, this has been a great conversation.
I really enjoyed it.
We're totally on the same pageabout what needs to be done when
a family is dealing with thiskind of crisis.
I want to ask you one lastquestion that I think is
probably one of the mostimportant questions that we can
address today, which is theimportance of self-care and
(36:17):
prevention for the caregivers.
Speaker 2 (36:19):
Yeah.
So I gave an example myselfabout taking care of myself.
So I was working full time.
I was talking about sleep andthose type of things.
I was working full-time 45minutes south of Portland while
(36:39):
taking care of mom, but when shegot out of here it was about a
half hour north In anunfulfilling job with a how can
I say it?
A micromanager, narcissist boss, a boss from health.
My stress level, my bloodpressure was sky high and I got
counseling.
One of the first things I didwas get into a support group.
(37:01):
I made sure that I got awayfrom my desk and took a walk
occasionally, made sure I wasgetting my sleep.
Those things were veryimportant.
One of them was a good exampleis I first started getting chair
massages at work.
Then I started getting regularmassages and I realized this is
not a luxury, this is anecessity and it's continued to
(37:22):
this day.
The reduction of my stress istaking care of myself, making
sure that, even though I don'thave my mom's risk factors that
I mentioned earlier, I'm veryproactive about my health.
That's very important because Ican't take care of me and my
wife.
I can't take care of myself.
Speaker 1 (37:38):
So you mentioned support groups For those that
are local to our Grand Blancoffice.
So we have offices in Michiganand Rochester, grand Blanc and
Brighton.
So we have offices in Michiganand Rochester, grand Blanc and
Brighton, if you're anywherewithin a half-hour drive or so
of our Grand Blanc office.
We do have a support group nowfor dementia caregivers and
(38:00):
that's on every third Tuesday.
Okay, so you can go to ourwebsite to get the details of it
, but it is a support group thatis through the Alzheimer's
Association and when we talkabout the Alzheimer's
Association, know that thatdoesn't mean that it has to be
Alzheimer's, it's any form ofdementia.
That is the dementia supportgroup.
Speaker 2 (38:20):
And many of those support groups are still online
and staying that way.
Speaker 1 (38:24):
Yeah, so that's another great option.
We have an in-person one.
Sometimes it's nice.
I enjoy having a face-to-facewith people.
There can be real good supportfor virtual, because sometimes
it's really hard to get awaywhen you have somebody that
you're caring for.
Speaker 2 (38:40):
24 hours a day.
Speaker 1 (38:42):
So that's a resource that you can pursue.
Pursue.
The Alzheimer's Association hasmany options and a call number
that you can call to get theirsupport and information about
support groups that you might beup to.
Speaker 2 (38:56):
Right, and there are other places you can check as
well by doing a search.
But, for instance, I do anothergroup that I started about
seven years ago through anon-profit just north of us in
Vancouver, washington, clarkCounty, and I did the first one
down in the Portland area and wedo those every week.
It's every Saturday.
I started at the care community, which is literally across the
(39:19):
street from me, but during thepandemic, of course, we went to
Zoom, but people are joining usanywhere from New England to
Hawaii.
I didn't want to orphan them,so every other week is in person
or online, so actually bothpeople in sporting, which is
very important.
Speaker 1 (39:36):
Yeah, and that's great.
And, bill Cohen, it was greatto have you on the podcast.
Excellent conversation.
I appreciate what you do in theservice that you provide to the
community, what you do in theservice that you provide to the
community.
So, thank you.
If this is a topic that youfound interesting, don't
hesitate to subscribe to ourpodcast.
(39:58):
So it's advice from youradvocates.
You can subscribe at any placethat you listen to podcasts, or
you can go to our website atmannerandlawgroupcom and you can
watch them there or watch themon YouTube.
Thank you for joining us, bill.
Speaker 2 (40:13):
Thank you, it was an honor.
Speaker 1 (40:15):
And I appreciate everything that you do and we'll
see you next time.
Speaker 2 (40:19):
Likewise.
Welcome back to Advice from your Advocates.
I'm Bob Manor, I'm a certifiedelder law attorney in Michigan
and today we have a veryinteresting guest, bill Cohen.
Welcome, bill, thank you.
Speaker 2 (00:12):
Honored to be here.
Thank you.
Speaker 1 (00:13):
So I've been excited about this podcast and learning
more about your advocacy.
Bill, just tell us a little bitmore about who you are and why
you're involved in the dementiaspace more about who you are and
why you're involved in thedementia space, Sure.
Speaker 2 (00:31):
So what I like to say is that if you had asked me
about maybe making 20 years agowhat was going to transpire with
my mom and what the journey wasgoing to be with her, and I'd
be doing what I do today andtalking to you today, I'd say
you're crazy.
Probably couldn't make out thatscenario.
It's pretty unbelievable.
So back in the, I'll tell you areal quick version.
My mom was living in Biloxi,Mississippi I'm not from there
and she lost her home to Katrina.
(00:52):
Some of the things we sawbefore and after, some of the
things we experienced, but Ibecame her advocate, her primary
caregiver and helping take careof all her different financial,
legal and care issues forapproximately 10 years.
She passed away about 11 yearsago at age 83.
(01:13):
And I thought I was going to domore volunteer work, came
across this concept of acaregiving support consultant,
and so it basically turned mypersonal loss and my pain into
my passion in my encore career,you know it's interesting that
you have tied Hurricane Katrinainto that.
Speaker 1 (01:32):
Did your mom experience some memory loss
before the hurricane?
Speaker 2 (01:36):
That's a great question.
We were seeing some things thatwere concerning I don't know
how much was memory loss, butshe was increasingly agitated.
Okay, not taking care of thefinances, not taking care of the
house?
She was in the carrier role formy late stepfather, who had all
kinds of conditions.
He was on or off hospice and wethought, oh, is mom just
(01:59):
getting tired?
Is she stressed?
Is?
Speaker 1 (02:00):
she getting older.
Speaker 2 (02:01):
Maybe if and I did take her to a doctor and got her
on whatever medication wasavailable at the time, it hasn't
changed much.
And we were thinking, if mystepfather passed away or went
into a care committee, would mombounce back?
No, we never got thatopportunity Because what did
happen in August 2005 in theGulf Coast Katrina completely
(02:22):
swept away their home down tothe elevation in the storm, and
the trauma of seeing it goneaccelerated in it and
exacerbated whatever was comingout we realized later it was
Alzheimer's.
Speaker 1 (02:35):
So okay, so Alzheimer's.
I was going to ask you becauseI know that's one of the
questions I had for you laterwas the different types of
dementia.
Of the questions I had for youlater was the different types of
dementia.
As you know, dementia is acategory of diseases and it
doesn't, you know, too often weget a diagnosis of dementia and
my next question is okay, great,what type of dementia?
(02:56):
And so what they believe isyour mom was experiencing
Alzheimer's type dementia.
Is that right?
Speaker 2 (03:01):
Exactly, and I'd like to say that because when I talk
to my clients and I talk peoplein support groups, that file is
very normal for a lot of uswith a person with declining
cognitive disability or thecarrier.
I'd say I did it twice, and onetime was before the trina, and
it's normal, I'll be fine, she'sokay, uh, the other time was
when she had to go into memorycare isn't it too soon?
(03:23):
isn't there an intro step?
But we looked at the symptoms,the behaviors, the signs of
Alzheimer's, like Alzheimer's,but we didn't need a formal
diagnosis, an autopsy.
All the time we knew what shehad.
Speaker 1 (03:37):
Yeah, no, I get that.
And so for those that aren't asfamiliar with the concept of
dementia, is that we're notalways, in fact, basically,
doctors can't tell us 100% forsure what type of dementia it is
until there's an autopsy.
But we have a pretty good idea,right?
There's a pretty good ideabased on the symptoms, things
(03:57):
like that, and various tests andvarious tests.
I'll tell you my personalstories.
When my dad went into a medicalprocedure and I was there all
day and I noticed this was thefirst time I noticed it with my
mother that there was asignificant deficit in her
ability to comprehend what wasgoing on around her, and I
(04:20):
talked to my family.
Like you say, people tend to bein denial.
I talked to my family about itand they're like no, no, no,
it's fine, everything's fine,it's all going to be okay.
It was just the stress of theday.
I said I'm not so sure aboutthat, you know.
And so I think what you'resaying is it's very normal for
families to be in a bit ofdenial about it and not, you
(04:41):
know, really try to avoid theacknowledgement of it, you know,
sometimes too long.
So tell us a little bit moreabout your journey and how you
got to be what you're doingtoday.
Speaker 2 (04:58):
So I'm originally from New England.
I went to school in Boston fromoriginally from Hartford,
newark Vacation.
From my high school I'm a NewEngland guy, even though I've
been gone for many years.
I had a business degree atBoston University.
I ended up in the hotelbusiness, I was in financial
services and I was working forthe state of Oregon, and it
sounds like none of them haveanything to do with the other,
(05:20):
including the one now, but thecommon thread is customer
service and helping people.
So after mom passed away and I'dalready gotten another business
degree and I dealt with all thelegal stuff and the financial
stuff and real estate, I thoughtI was just going to do more
(05:41):
volunteer work Because a fewmonths after she passed away I
became the facilitator of agroup I was attending for a few
years.
Wasn't expecting that, but Iwas doing the Walked In at
Alzheimer's.
I was going to the Capitol andadvocating for more research,
funding that type of thing.
Then I came across this conceptof a caregiving support
consultant and I did a lot ofresearch and reached out to
(06:03):
everybody I could find inLinkedIn in the industry and
made a lot of connections, builtmy network and learned a lot.
So I started a little overseven years ago.
I started my business.
I'm a little different fromother practitioners in the
industry, which is why a lot ofpeople haven't heard of me or
what I do is that we're close toa lot of things but we're not
that specific Provide advice,support, resources, referrals,
(06:27):
help people take care of theirloved one, manage the care,
practice self-care andpreservation or preventive care,
and I help put together a team.
I put together a plan.
I like to say I don't competewith anyone.
I collaborate with everyone,including people in your,
because these are all pieces ofthe puzzle.
(06:48):
We don't work in silos.
We should be all coordinating.
I like to use the term thatisn't used in elder law, but it
is our elder care.
But in child care is wraparound.
We'll get everybody together onthe same page and help take
care of the loved ones who can'ttake care of themselves, and I
work that way instead of oneperson, and they take care of
(07:11):
the housing and that's all.
I work with the board ofoperators, and that's part of
the reason why I'm a certifiedsenior advisor to the CSA.
Speaker 1 (07:20):
After my name is.
Speaker 2 (07:21):
We take a holistic approach.
We look at that broaderperspective and take care of the
, our most vulnerable population, their, their care, their
safety and age, as as well aspossible.
So I like those are people Icollaborate with too.
Speaker 1 (07:40):
I like that.
I like the holistic term.
It's funny, I use that also andit's very true about both of
our work that both you and I do.
It's very holistic and I alwaysthink it's funny because you
know, we're both old enough toknow that.
You know sometimes that wasused as more of a hippie kind of
(08:02):
you know, commune type of athing, but it's important to
note that that is a real thing,that most of the time the
experts that you're working withare only looking at that narrow
slice.
Even lawyers, you know people,social workers, even discharge
planners, you know they're alllooking at that sort of narrow
(08:22):
slice and somebody needs to lookat the big picture right.
And that's the idea of theholistic concept here.
So talk a little bit more aboutwhat that means to be a
holistic service provider.
Speaker 2 (08:36):
Kind of funny.
You mentioned the kind of thewoo-woo hippie thing.
Is that for?
a while I was in a group calledHolistic Chamber of Commerce and
it was mostly the alternativetreatments and practitioners and
it was a bit of oh, nice people, absolutely.
So what I try to do is and I'mgoing to give a story I think
(08:56):
it's a good way of illustratinghow I can help people because
and I think you saw that I amalso a trained elder mediator
and this is almost a combinationof my two hats.
So this woman is originallyfrom Portland but she's living
in UK London for about 30 years.
Her mother is in a carecommunity here in Portland and
(09:21):
she was being neglected by herstepfamily by the care community
.
It was reported to AdultProtective Services when it
should have been probably thecare community that was reported
.
I wasn't doing the job right.
Her own doctor was neglectingher.
To make a long story short isthat she found me through the
Alzheimer's Association, thedaughter we got together.
(09:42):
My mom was stuck in memory careand she shouldn't have been at
that time.
She wasn't getting the care andattention needed, and so we had
meetings and involved all thoseentities plus a house call
geriatric physician among thepeople, the housing person and
we, and of course, the HomeHealth Care Agency as well and
(10:03):
got mom back on track, got herthe health, got her the
attention we need and got her onthat mimicry unit where she
shouldn't have been Now, to makea long story short, I've been
working with that family forabout 18 months now and various
things have happened, as mom hashad falls, hip fractures,
declining cognitive.
but we continue to work in thatholistic approach, bringing all
(10:27):
the different entities in tomake sure that mom is safe and
has whatever quality of life ispossible for whatever she has
left.
And I can't count how manytimes the daughter says thank
you, thank you, thank you, thankyou.
I don't know what I would havedone if I hadn't found you, so
it's a challenging situation butvery gratifying.
Speaker 1 (10:47):
So you know, in a minute I want to get back to you
.
Know you're telling about yourmom and how you kind of came
into this, but I want to go downthat path first about, ok, what
exactly it is that you do andhow do people find you.
What's the initial?
So I understand why people findme right.
They are often looking for mebecause they're not sure how
(11:11):
they're going to pay for care.
They're not sure if they havethe right legal documents in
place.
Now we do a lot more than that,right.
We do advocacy, we do thatholistic approach to things.
But I understand why there'sthat motive to say, okay, we're
not sure how we're going tohandle this financially and
legally.
How do they find you and whatis that sort of initial first
(11:33):
step?
Speaker 2 (11:35):
Well, I'm going to use your phrase depends, right,
that's funny.
Speaker 1 (11:39):
For those that are listening, that's the classic
legal answer.
Every lawyer you can answer anyquestion with that depends
Right and that's one of thethings I don't do.
Speaker 2 (11:49):
I don't practice law.
I'm not a financial advisor.
I can't give specific financialadvice.
I do hands-on caregiving.
However, I've been through thelegal side keeping mom eligible
for Medicaid.
I used to be in financialservices, so I talk in general.
I can help people with theirlong-term care policy because I
can read it and I understand itand I do new companion work.
(12:09):
I will spend time with clients,loved ones with dementia, like
that woman I was just talkingabout.
I go to visit her in the carehome.
So people either it's word ofmouth I'm very involved, like my
local chamber and otherorganizations.
They can find me on my website.
I'm very active on social mediaon all platforms, even TikTok.
(12:31):
You won't see me dancing, but Ido do videos there.
That's great Me too.
Speaker 1 (12:35):
So I'm a video campaign.
Speaker 2 (12:37):
Usually at some point they will get on my website or
they will have my uh calendarcalendar to schedule an
appointment.
Initial conversation.
Whether it's half hour hour, Idon't care.
Whatever they need, we'll talk,see what their needs are.
Uh, regardless of affordability, I'll let them know very
clearly.
I either work in an hourlybasis 75 an hour or uh for a
(13:02):
minimum two.
But, as we know, dementia inparticular is a long term and
very complicated and sometimeslong distance because families
are sprouting all over the place, like the case I was talking
about, which was an extreme.
So once they're getting beyondtwo or three hours, the monthly
approach is better.
It's $300 a month and it givesthem about five, six hours and
(13:26):
I'm very flexible.
I can spend anything.
I try to keep them veryaffordable.
Speaker 1 (13:32):
So that's interesting that you mentioned the long
distance when you were dealingwith this with your mom.
Was it a long distance issue?
Speaker 2 (13:40):
Part of it.
I almost said it no.
Speaker 1 (13:44):
And you're able to help people long distance too.
Speaker 2 (13:46):
Right and the pandemic made that really
explode because people werelooking for support everywhere.
Right so being able to workonline for a lot.
But yeah, I was in Portland.
She was in Mississippi with acontinuous storm.
Then she was evacuated with astepfamily to North Carolina and
(14:08):
then one aunt in Delray Beachbefore I moved her out here.
So yes, I was doing thelong-distance caregiving, the
travel to check in on heroccasionally before I moved her
out here, which we did beforewhile she was still ambulatory
and had enough cognitive abilityto go along with the trip.
Speaker 1 (14:26):
So I always like to make it clear to our listeners
when we have guests, andsometimes they're very
interested in saying oh, I wantto.
You know, could I work withthat person?
You can pretty much work withanybody in any area, right?
Speaker 2 (14:39):
Absolutely.
Yeah, like Grace is a womanmostly in New England, but her
family is in South Florida andshe's from the Dominican and
actually in her podcast she sayswe need to talk.
Speaker 1 (14:51):
My father has dementia, so we're helping that
family all over the place aswell ask you more about your mom
because, um, you know, this issomething that's very difficult
for families and for people thatare experiencing with this with
their parents.
Um, and it's really easy togloss over things.
(15:14):
You start seeing some red flags, you start seeing some things
and it's, it's just really easyto, um boy, ignore, uh, the
problem because it seems likesuch an avalanche that might be
coming.
So tell me a little bit moreabout you and your mom and what
the symptoms were, what thethings were that you saw that
(15:36):
you realized you had to step in.
Speaker 2 (15:38):
Sure.
So again, while she was tryingto take care of my late
stepfather, we saw she wastrying to keep him alive.
I remember hearing about itwhen she was pounding on his
chest and giving him thenebulizer and inhaler and all
this stuff.
So it was really wearing downon her.
But yeah, as I mentioned,paranoia, agitation.
(16:01):
She was originally aprofessional artist, including
printmaking, moved over intocollage and other media, and she
was also interestingly, left myright brain thing that she was
the person who handled thefinances.
And in the 1980s, in her 60s,she was an early adopter not
(16:21):
just of a computer but of a mat,which was very infrequent at
that time.
So once she was unable to dothose things and do her art as
well, these were big reasons forconcern.
That's why we did get her to adoctor and we were hoping that
she would bounce back, but wedidn't get the opportunity.
(16:42):
Again, that trauma and what'sthe interesting thing is that we
usually hear about and I don'tknow if you were going to ask
about this, but I'd love to talkabout it because the research
is coming a long way.
We always hear about age andand we hear about genetics,
heredity, right.
However, no one else in thefamily has Alzheimer's Two.
She was in her early 70s, aboutmy age, when she was first
(17:06):
showing signs and for people whodon't know it, alzheimer's and
other dementia frequently willbe developing for many years
before it even becomessymptomatic Right.
Symptomatic right and in hercase, she's living in an area
where toxins, pollution andchemicals in the air, foil and
water, right mold and mildew.
(17:27):
In that humidity she used tosmoke, barely walk the dog, let
alone any other exercise.
She's in the caregiving roleand she's socially isolated few
miles off the coast.
Plus with her artwork for manyyears, the intaglio process she
was etching it to metal plaguesand putting it into an acid bath
.
Oh boy she is supposed to child.
(17:48):
But the lesson is that and theAlzheimer's Association of
Research is showing this moreand more- Absolutely.
With lifestyle choices andenvironment.
These are huge factors and Ithink it's why we're seeing more
early onset, younger peoplegetting all those interventions,
not just old people.
Speaker 1 (18:08):
We recently had Dr Natalie Edmonds on the podcast
and she talked about that thatstudies show that there is a
percentage that is almostinevitable that it's based on
genetics, but a much largerpercentage is partially based on
genetics and then partiallybased on environmental issues
(18:32):
and decisions and lifestyle andthings like that.
But the largest percentage isactually lifestyle and and
exercise and uh and exposure to,uh, you know, chemicals and
things like that.
And and I found that veryinteresting that for those of us
that are worried about this andI understand the issues there
(18:53):
are ways for us to make it lesslikely.
I I've talked to so many peoplethat think that, oh well, if it
happens, it happens, it'sinevitable.
It's not necessarily inevitable.
It is for a small percentage ofpeople, but for most of us,
there are things that we can doto lessen the likelihood that
(19:13):
we're going to experience thistype of dementia.
Speaker 2 (19:17):
And I'm sure you know that dementia is not a normal
part of aging.
It is not inevitable.
However, as you get older, yourrisk level does increase and
one of the things and you couldmention this to you to got a lot
of the boxes is also gettingyour sleep, getting a good
night's sleep and clearing thattongue-dodgy brain, the towels
(19:38):
and tables and that type ofthing Very very important.
Speaker 1 (19:41):
I can't tell you I know I'll be honest with the
audience I do struggle withsleep.
It's one of the things I talkto my clients a lot about,
because often what we're seeingis we have a caregiver spouse
and then we have a spouse withdementia.
Well, what's the problem withthat?
The caregiver spouse often isnot sleeping, that they're
(20:01):
worried, that they have all theweight of the world on their
shoulders, that they're worriedabout the spouse with dementia
getting up in the middle of thenight, maybe wandering, things
like that, and they're notgetting proper sleep.
And, frankly, that's a recipefor disaster.
You know, the statistics tellus that the caregiver spouse is
most likely to die first.
Well, that's a lot because ofsleep.
(20:22):
Like you mentioned, the lack ofsleep, the stress, the pressure
that's on them.
Speaker 2 (20:27):
Yeah, I don't know if you've heard this statistic.
It's a rough number, but fordementia caregivers over 70
years of age, two-thirdstwo-thirds pre-deceased the
person they're caring for.
Not only is that tragic butit's preventable If people go to
the wrong doctor, get theirsleep, eat better, that type of
(20:49):
thing.
Speaker 1 (20:50):
We had a guest recently that was talking about
how they offer therapy servicesfor people with brain injuries
and neurodegenerative diseaseand things like that, and he was
talking about how many familiesbecome very you know, secluded
when there's a dementiadiagnosis.
(21:10):
In other words, they maybe theyget the diagnosis, maybe they
get the right, you know, they goto the right doctors but then
they just kind of go home andjust kind of seclude themselves
and don't get the therapies thatare available, don't get the
right, you know they go to theright doctors but then they just
kind of go home and just kindof seclude themselves and don't
get the therapies that areavailable, don't get the you
know, occupational therapy orthe speech therapy or the
services for the family thatmight be available or things
like your services, and that itcould not only extend the life
(21:35):
of the caregiver spouse, notonly extend the life of the
spouse with dementia, but givethem better quality of life for
the time period that they haveleft.
And that many families I don'tknow if it's a matter of they're
embarrassed or pride orwhatever it is, but his
experience was that manyfamilies choose to just kind of
(21:58):
seclude themselves once you getthat diagnosis of dementia and
that there's so many things thatcan make life better for both
partners, for the person withdementia, for the spouse, for
the family, for the kids,including things like the
services that you offer.
Speaker 2 (22:15):
And I may be preempting with your questions,
I don't know, but like one ofthe first things people should
do, and besides making sure yourloved one is safe, it's also
making sure all the legal is inplace.
Yeah, our return to theadvanced directive as needed
wills, trusts, et cetera,because if you can't have access
(22:37):
to the doctor's, you can't beadvocating for your loved one.
You're going to be in trouble.
Speaker 1 (22:43):
That's a good question.
I'll add a little bit to that.
So it's almost like you'reasking me the question on this.
And so there is a thing that alot of families think oh well,
you know, in 1990, we went to alawyer or we downloaded some
documents or whatever.
And frankly, that's notprobably okay, that's not
sufficient.
(23:03):
When it comes to things likedementia, we have to be not only
have things up to date andcurrent, but there's some
additional language that we needin there.
And if we wait too long andI'll explain that in a second,
but if we wait too long theproblem is it could get to the
point where they're not legallycapacitated to be able to sign
(23:25):
new documents.
So if you have, sometimespeople say, well, just make sure
you have your power of attorney, make sure you have your will,
things like that Problem is, youknow it might not be enough.
You know, not every will iscreated equal and every power of
attorney is created equal, andsometimes with dementia we need
to have additional authority,additional language in there.
And so many times people thinkyou know.
(23:48):
They're told oh, you have powerof attorney, Okay, great, Well,
you might need to update it onthe early stages of dementia
before it gets to the pointwhere you can't, before it gets
to the point where you can't.
So, specifically, what do I meanby that?
There's a thing calledextraordinary powers, extra
authority.
Why do we need extra authority?
Well, because the person withdementia is likely going to get
(24:11):
to the point where they're notable to authorize or give
permission to do the thingsnecessary to protect the family,
to protect themselves, totransfer assets, to do things
that are going to be able toallow them to qualify for
government benefits, and so weneed to have that in writing and
we have to have clarity on that.
And most lawyers don't includethat in your standard power of
(24:31):
attorney.
Most lawyers don't include thatin their standard legal
documents, because most lawyershave never filed a Medicaid
application.
They've never filed a veteranbenefit application.
So I don't mean to uh, you know, overtake the the conversation
here, but you brought it up andI think it's really important
that people understand.
That is a clear issue.
It's not just about you havethe documents that put you to.
Speaker 2 (24:52):
Your documents have the right language in them now
that's definitely job one, jobone, a one of the two, and I I
always refer to an elder lawattorney because they do
specialize in those subjectmatters.
I was going to mention all youwere talking about, the
withdrawing, etc.
That's where I know, like yoursleep, it's socialization,
making sure you, your eyewear isup, is current, you're getting
(25:16):
your hearing aids if you needthem and keep them programmed
and charged, because if youdon't, you're just your hearing
aids if you need them and keepthem programmed and charged,
because if you don't, you'rejust going to withdraw.
They're going to withdraw.
You're going to the world and itjust accelerates, exacerbates
the situation, which is verytragic because, like you said,
if you do things, these things,early enough, when you see those
first signs, it would be easierto maintain some quality of
(25:39):
life for as long as possible.
I want to do a quick, quickreference.
When we're talking about sleepetc, and the burden of the
people of the um taking care ofthe loved one, is that I got
some studies from a localdispensary about studies, early
studies, about using dbd and orthc, yeah, or the person with
(26:00):
dementia, and because they wereless agitated, etc.
The caregiver, uh, burden wasthe lesson.
So it's a win-win both ways,you know.
Plus that's another thing tolook at.
You may want to go to yourlocal dispensary.
I'm not advocating for anythingin particular, but even a
little bit of thc along with cbdcan help with sleep.
Speaker 1 (26:22):
So something, maybe one second, you have to look at
your other many patients, ofcourse yeah, so of course, talk
to your doctor on that, right,you know you'll agree with me on
that.
Talk to your doctor.
But it is one of those thingsthat unfortunately becomes
controversial and maybe itshouldn't be.
Maybe it's one of those thingsthat you know it just carries
whatever political baggage andwhatever else.
(26:43):
But the reality is, if this issomething that can improve
quality of life for our elderpopulation, it's unfortunate
that it has this baggage behindit.
But again, we're not givingmedical advice.
We're just saying talk to yourdoctor and maybe incorporate
this as part of your, your planyou know, unfortunately big
pharma doesn't have all theanswers yet right, uh, so I I
(27:08):
can't agree with that more.
You know, a lot of times theanswer for whenever there's a
any, so two problems.
Number one is often thediagnosis is generalized
dementia.
Well, that doesn't tell us much.
Dementia is a category ofdisease.
It doesn't tell us which typeof dementia it is.
And then, secondly, wheneverthere's this diagnosis of those
(27:29):
drugs, acknowledge that it onlyhelps a percentage of the people
, a lot of people, that itdoesn't help everybody.
Speaker 2 (27:47):
And those medications have been out on generic for 20
years already.
They haven't come up withanything better, which is quite
unfortunate, but yeah.
It'll help with some temporaryrelease.
That's about it.
So I want to go back tosomething you were just talking
about, which is partly acatalyst for my doing what I'm
doing.
Is that rightly so?
(28:09):
The emphasis on most diseasescancer, heart, dementia is on
the person with the disease,because they can't take care of
themselves.
They may not be able to maketheir own decision.
The problem is and this is whatI found 20 years ago and it
hasn't improved much is who'ssaying to the caregiver how are
you doing?
What support and resources doyou need?
(28:30):
And people feel let down.
If they even get a diagnosis,specific or otherwise, they say
where's the plan, where's thetreatment?
Speaker 1 (28:39):
Where's the that's a big deal and, frankly, from my
perspective, and how we workwith families is that's the
thing that we have to address.
When families come to me, a lotof times they're saying, oh,
(28:59):
this is about mom or this isabout dad, and I say, well, yes,
of course we've got to makesure that we've got a plan for
the person that has the dementiaor some form of dementia.
We also and just as importantis we have to have a plan for
the caregiver spouse, the otherspouse.
Now, obviously, if it's asingle person sometimes it's the
(29:20):
caregiver daughter or thecaregiver son or the caregiver
grandchild but the thing is thatwe have to have a plan for them
too, because you know, if theyget sick, if they break their
hip, if they fall down, if theyhave a stroke, if they die, the
entire plan falls apart, and soit is just as much about the
(29:41):
caregivers as it is about theperson with dementia.
Hey, bill, tell me a little bitmore.
I know one of the things thatyou do is elder mediation.
So tell us a little bit moreabout what elder mediation is
and how do you participate in it.
Speaker 2 (29:53):
So, as many of us know, some families can't even
decide on ordering pizza, letalone caring for their loved one
.
They're divided.
They may not be all on the samepage.
Some people may have ulteriormotives or other agendas.
That's unfortunate.
I was lucky.
I had very good support from myfamily.
They may have had differentopinions, but we all cared about
(30:15):
what was going on with my mom.
Elder mediation is when familiescannot come to an agreement.
They're at an impasse and theyneed probably an objective or
neutral third party to help themkeep talking, come to an
agreement.
I don't make the decision forthem.
I can't fix the family problems.
(30:35):
I'm not a therapist, but wewill keep talking and and try to
help them come to thatagreement.
They can all live with realquickly.
It was with a family of fourdifferent cities, three
different states around thenorthwest.
They're divided down the middlebetween the four of them about
the terror and where and how momwill be taken care of, and we
got on the calls.
I remember one of the siblingssaid at one point well, at least
(30:58):
we're not yelling at each other.
That was a win.
And one of the siblings at onepoint the one who hired me at
one point went off camera.
He was off mic.
He says I'll be listening, sowe kept talking kept going, came
to an agreement.
He wasn't happy about it, aboutthe outcome.
They told me later you did yourjob and gave me a great
(31:20):
testimonial so that kind ofsituation and mom is doing well
ever since.
It's very gratifying.
It is a way, with all duerespect to your profession, to
keep you out of the courts.
It's not about the attorneys,it's about them and again, it's
just with me and them.
I usually will do a group calland then maybe individual
(31:41):
conversations and then come backas a group and try to come to
that agreement.
If they will settle on yeah,which is great.
Speaker 1 (31:47):
And you know I take the try to come to that
agreement.
They will settle on yeah, whichis great, and you know I take
the position of we're only goingto help families that can come
to that agreement.
I'm not going to get involvedin that.
You know court battle whereeverybody's arguing and who
should be guardian, and you knowall of that.
I simply will not take thosecases and I know that that's a
(32:09):
line in the sand that somepeople are upset by.
But the bottom line is I ambest at helping families that
are willing to work together.
Now, like you, sometimes itdoesn't mean that the family all
agrees.
Before we have to have thatkind of family meeting where
everybody sits down and we all,like you said, sometimes we
disagree and commit, disagree tothe.
(32:31):
You know that you said you'rethe person that hired you wasn't
real thrilled with the answer.
But if we can commit to a planand that's what's important is,
you know, allowing the family toget through that, to allowing
the family to have that, youknow, and I here's my assumption
my assumption is uh, I at leastwalk into the meeting with the
(32:56):
uh assumption that the family isall well intentioned but
they're getting voices fromeverybody.
They're getting voices fromculture, from movies, from their
barber, from their neighbor,from you know, from whoever uh
telling them that this is theway it should be.
Uh, when we have a a parent incrisis, when we have a parent
(33:18):
with dementia, there's lots ofpeople willing to give advice.
Some of it's bad advice it isand so the idea is that you know
to come together instead ofcome together in screaming, come
together and say, OK, we've gotto look for what's best in this
situation.
Find that light at the end ofthe tunnel.
Speaker 2 (33:39):
And that's in the best interest of their person,
who needs the attention.
Speaker 1 (33:44):
And it's great that you do that because you have an
advantage over me in that whilewe do that also, I have to worry
about attorney ethics andconflict of interest, and so as
soon as it seems there'sconflict of interest, I have to
say sorry, I can't help youanymore.
Where you're able to still talkto the family and try to move
(34:07):
forward to a conclusion wherethey're all going to be in
agreement.
As soon as somebody says I'mgoing to hire a lawyer, we're
fighting about this, I have topretty much shut it down and say
, okay, then I'm out because Ican't be involved in the
Catholic interest.
As a non-lawyer, you're able tomediate some of these things in
a very positive way.
Speaker 2 (34:27):
However, I still have one, as you say, a line in the
sand.
If everybody does not agree tomediation, how did it happen?
Right?
Speaker 1 (34:37):
Right, good point.
So another thing that you do,and I think is very interesting
and very important, iscollaborating to create a care
team, you know, coming up withthat whole holistic team to
figure out how do we moveforward.
Talk to me more about that.
Speaker 2 (34:54):
So and I gave one example earlier and it's a real
good one Of course, it againdepends upon the situation.
Not everything's necessary Thenwe already have the legal
documents in place to have areview.
So when I'm talking to people,what are your needs?
What are your biggest concerns?
I'm looking at, what can webring in to the team to help
(35:24):
collaborate and talk about thevarious issues?
That's affecting not just theperson with dementia or other
condition, but also the family.
So, because everybody isinvolved, no matter where they
are, what they do, how much orhow little, they're a carrier,
they're part of the caregivingteam, and that can be handling
finances, that can be makingcalls or purchases, that can be
coming in for a week and givingrespite to the primary carrier.
There's a lot of different waysthat can work and that's what I
(35:45):
help them come together.
It's not a matter of I'm toofar away, I'm too busy, I can't
deal with it.
No, there aren't always thingsthat you can do.
Speaker 1 (35:56):
Well, Bill, this has been a great conversation.
I really enjoyed it.
We're totally on the same pageabout what needs to be done when
a family is dealing with thiskind of crisis.
I want to ask you one lastquestion that I think is
probably one of the mostimportant questions that we can
address today, which is theimportance of self-care and
(36:17):
prevention for the caregivers.
Speaker 2 (36:19):
Yeah.
So I gave an example myselfabout taking care of myself.
So I was working full time.
I was talking about sleep andthose type of things.
I was working full-time 45minutes south of Portland while
(36:39):
taking care of mom, but when shegot out of here it was about a
half hour north In anunfulfilling job with a how can
I say it?
A micromanager, narcissist boss, a boss from health.
My stress level, my bloodpressure was sky high and I got
counseling.
One of the first things I didwas get into a support group.
(37:01):
I made sure that I got awayfrom my desk and took a walk
occasionally, made sure I wasgetting my sleep.
Those things were veryimportant.
One of them was a good exampleis I first started getting chair
massages at work.
Then I started getting regularmassages and I realized this is
not a luxury, this is anecessity and it's continued to
(37:22):
this day.
The reduction of my stress istaking care of myself, making
sure that, even though I don'thave my mom's risk factors that
I mentioned earlier, I'm veryproactive about my health.
That's very important because Ican't take care of me and my
wife.
I can't take care of myself.
Speaker 1 (37:38):
So you mentioned support groups For those that
are local to our Grand Blancoffice.
So we have offices in Michiganand Rochester, grand Blanc and
Brighton.
So we have offices in Michiganand Rochester, grand Blanc and
Brighton, if you're anywherewithin a half-hour drive or so
of our Grand Blanc office.
We do have a support group nowfor dementia caregivers and
(38:00):
that's on every third Tuesday.
Okay, so you can go to ourwebsite to get the details of it
, but it is a support group thatis through the Alzheimer's
Association and when we talkabout the Alzheimer's
Association, know that thatdoesn't mean that it has to be
Alzheimer's, it's any form ofdementia.
That is the dementia supportgroup.
Speaker 2 (38:20):
And many of those support groups are still online
and staying that way.
Speaker 1 (38:24):
Yeah, so that's another great option.
We have an in-person one.
Sometimes it's nice.
I enjoy having a face-to-facewith people.
There can be real good supportfor virtual, because sometimes
it's really hard to get awaywhen you have somebody that
you're caring for.
Speaker 2 (38:40):
24 hours a day.
Speaker 1 (38:42):
So that's a resource that you can pursue.
Pursue.
The Alzheimer's Association hasmany options and a call number
that you can call to get theirsupport and information about
support groups that you might beup to.
Speaker 2 (38:56):
Right, and there are other places you can check as
well by doing a search.
But, for instance, I do anothergroup that I started about
seven years ago through anon-profit just north of us in
Vancouver, washington, clarkCounty, and I did the first one
down in the Portland area and wedo those every week.
It's every Saturday.
I started at the care community, which is literally across the
(39:19):
street from me, but during thepandemic, of course, we went to
Zoom, but people are joining usanywhere from New England to
Hawaii.
I didn't want to orphan them,so every other week is in person
or online, so actually bothpeople in sporting, which is
very important.
Speaker 1 (39:36):
Yeah, and that's great.
And, bill Cohen, it was greatto have you on the podcast.
Excellent conversation.
I appreciate what you do in theservice that you provide to the
community, what you do in theservice that you provide to the
community.
So, thank you.
If this is a topic that youfound interesting, don't
hesitate to subscribe to ourpodcast.
(39:58):
So it's advice from youradvocates.
You can subscribe at any placethat you listen to podcasts, or
you can go to our website atmannerandlawgroupcom and you can
watch them there or watch themon YouTube.
Thank you for joining us, bill.
Speaker 2 (40:13):
Thank you, it was an honor.
Speaker 1 (40:15):
And I appreciate everything that you do and we'll
see you next time.
Speaker 2 (40:19):
Likewise.
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