June 22, 2022 • 27 mins
Having a loved one diagnosed with dementia takes a toll on their families, especially those who provide care for them throughout their journey. Family members must carry out their daily routines while simultaneously caring for their loved ones who have dementia. Because you are seeing your loved ones slowly succumb to the disease, it can cause stress, anxiety, and emotional suffering. It exacerbates the pain if you have little knowledge and information about the illness since some medical practitioners are unable to give you guidelines and plans for treatment.
In this podcast, Perry Limes talked with Alice Jo Weaver and Cathleen Rawlings, the caregivers for their loved ones who had Dementia. They shared what they experienced, the challenges, the suffering as well as lessons when taking care of loved ones that had dementia.
Key Takeaways
The Story of Alice Jo and Cathleen as caregivers with their Family member having Dementia
The Challenges They Faced When Dealing with and Caring for Loved Ones with Dementia
Surprising Things They Discovered Regarding the Condition of Dementia
Tips on Coping with Stress and Anxiety while Caring for Loved Ones with Dementia
Alice Jo and Cathleen’s Hospice Care Experience
Takeaways and Lessons from Caring for Individuals with Dementia
Quotes
One thing that surprises me is having a diagnosis, entering the medical system with a diagnosis, and receiving such little advice and information. - Cathleen
The mood swings and massive personality shift that happened as a result of dementia as a whole also surprised me. She was no longer the person she used to be. - Cathleen
We were hopeful since the experts and everyone indicated we may have 10, fifteen, or twenty years because progress was slow. So my husband and I made plans. We had bucket lists. We were going to do what we could and have as rich a life as we could together. And none of that happened because of how quickly he declined. - Alice Jo
I needed some help around the house since I couldn't leave the house without worrying about my husband's safety. So I called the Visiting Angels and arranged for someone to come in a couple of times a week for a couple of hours so I could go out of the home and do some shopping or just go for a walk if I wanted to. - Alice Jo
Featured in this Episode
Alice Jo Weaver
Wife and Caregiver for her Late Husband Diagnosed with Dementia
Cathleen Rawlings
Daughter and Caregiver for her Late Mother Diagnosed with Dementia
Perry Limes
Director, Strategic Partnerships
Hospice of the Chesapeake
Profile: https://www.hospicechesapeake.org/perry-limes/
LinkedIn: https://www.linkedin.com/in/perrylimes
Thanks and Appreciation
We'd like to thank the John and Cathy Belcher Institute for their generous support of our community outreach and education programs.
https://www.alz.org/
https://www.visitingangels.com/
Chapters
00:00 Introduction
01:40The story of Alice Jo’s Husband and his journey with Dementia
02:59 The Challenges Alice Jo faced with his Husband
06:40 Cathleen’s Mother and her Journey with Dementia
10:00 The Challenges Cathleen Faced with her Mother
11:15 Surprising Things about Cathleen’s Mom on her Journey with Dementia
13:03 Surprising Things about Alice Jo’s Husband on her Journey with Dementia
16:19 Tips on Coping with Stress and Anxiety
20:13 The Experience with Hospice Care Services
24:08 Lessons Learned When Taking Care of Dementia Patients
26:20 Thanks and Appreciation
In this podcast, Perry Limes talked with Alice Jo Weaver and Cathleen Rawlings, the caregivers for their loved ones who had Dementia. They shared what they experienced, the challenges, the suffering as well as lessons when taking care of loved ones that had dementia.
Key Takeaways
The Story of Alice Jo and Cathleen as caregivers with their Family member having Dementia
The Challenges They Faced When Dealing with and Caring for Loved Ones with Dementia
Surprising Things They Discovered Regarding the Condition of Dementia
Tips on Coping with Stress and Anxiety while Caring for Loved Ones with Dementia
Alice Jo and Cathleen’s Hospice Care Experience
Takeaways and Lessons from Caring for Individuals with Dementia
Quotes
One thing that surprises me is having a diagnosis, entering the medical system with a diagnosis, and receiving such little advice and information. - Cathleen
The mood swings and massive personality shift that happened as a result of dementia as a whole also surprised me. She was no longer the person she used to be. - Cathleen
We were hopeful since the experts and everyone indicated we may have 10, fifteen, or twenty years because progress was slow. So my husband and I made plans. We had bucket lists. We were going to do what we could and have as rich a life as we could together. And none of that happened because of how quickly he declined. - Alice Jo
I needed some help around the house since I couldn't leave the house without worrying about my husband's safety. So I called the Visiting Angels and arranged for someone to come in a couple of times a week for a couple of hours so I could go out of the home and do some shopping or just go for a walk if I wanted to. - Alice Jo
Featured in this Episode
Alice Jo Weaver
Wife and Caregiver for her Late Husband Diagnosed with Dementia
Cathleen Rawlings
Daughter and Caregiver for her Late Mother Diagnosed with Dementia
Perry Limes
Director, Strategic Partnerships
Hospice of the Chesapeake
Profile: https://www.hospicechesapeake.org/perry-limes/
LinkedIn: https://www.linkedin.com/in/perrylimes
Thanks and Appreciation
We'd like to thank the John and Cathy Belcher Institute for their generous support of our community outreach and education programs.
https://www.alz.org/
https://www.visitingangels.com/
Chapters
00:00 Introduction
01:40The story of Alice Jo’s Husband and his journey with Dementia
02:59 The Challenges Alice Jo faced with his Husband
06:40 Cathleen’s Mother and her Journey with Dementia
10:00 The Challenges Cathleen Faced with her Mother
11:15 Surprising Things about Cathleen’s Mom on her Journey with Dementia
13:03 Surprising Things about Alice Jo’s Husband on her Journey with Dementia
16:19 Tips on Coping with Stress and Anxiety
20:13 The Experience with Hospice Care Services
24:08 Lessons Learned When Taking Care of Dementia Patients
26:20 Thanks and Appreciation
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:08):
Good afternoon and welcome back to Life, Death and What Matters in Between.
I'm your host, Perry Limes,and I am joined today by Alice,
Joe Weaver, and Kathleen Rawlings.Thank you ladies for joining us today and
on today's episode, we'll be doingthe journey of dem with dementia a caregiver's
(00:31):
perspective, as we've done in thepast episodes. I'd like to welcome Alice,
Joe, and Kathleen, but beforewe get started, I just want
to you know, learning about yourpersonal stories as caregivers and every episode to
(00:51):
help us better understand an individual's journeywith dementia. We've been discussing a composite
case scenario and talking about Joe,our sixty six year old African American male
who's been dealing with dementia for acouple of years, and his wife of
forty years, Veronica, who ishis primary caregiver. Joan Veronica have adult
(01:14):
daughters who live out of state,but are very active in both Joe and
Veronica's lives. Today, we aregrateful to learn about caregivers from both a
wife who cared for her husband anda daughter who cared for her mother.
So with that, Alice Joe,let's start with your journey as a wife
and a caregiver. Thank you somuch for joining us. Can you share
(01:37):
a little bit about your husband's journeywith dementia. Well, my husband was
diagnosed in August of two thousand andnineteen, I'm sorry, twenty and twenty,
and in retrospect, there were symptomsand clues much sooner than that,
(02:00):
I would say, probably two orthree years. And at the time he
was diagnosed, it's not that itwas a shock because by that point we
thought that there was something that weneeded to address. But he passed away
at last November, and that's onlya year and a half. And our
(02:21):
understanding from the specialists and everybody elseand everything that we read was that dementia
and Alzheimer's is very slow progressive,and we did not find that to be
the case at all. So ourjourney was very difficult and it was like
a roller coaster ride, truly.There were things that happened very quickly and
(02:44):
it seemed a time that we wererunning to catch up. Wow. That's
so. With that, what weresome of the biggest challenges that you face
with your husband as you started tosee things declimb. I had to get
very creative because I was determined thatmy husband would live his best life.
(03:06):
And we communicated all the time.We were very honest about what was going
on and how we were feeling andwhat we were going to do. And
at no time did I ever makea decision or make a movement that he
didn't say, okay, that itwas all right with him. The challenge
was trying to keep his life asnormal as possible as things were progressing.
(03:35):
When he wasn't able to walk asmuch, when his speech started to be
difficult, when he couldn't write,when he couldn't write a check, and
I had to step in. Iasked, do you want me to do
it? And he said yes.When he couldn't read anymore, when he
couldn't do his affirmations that he'd beendoing for like nineteen years, he couldn't.
(04:00):
It was and I tried in everyway I could to make things possible,
with books on tape, walkers whenhe needed it, different types of
walkers, different foods that he wasable to handle. That all of those
(04:21):
things we were a great challenge.Wow. And and I know you were
talking about his articulation was he ableto articulate with you some of his own
challenges and what he felt like hecouldn't because obviously he's you know, being
a husband, being a father.You know, he's been providing and caring
(04:43):
his whole life. And then it'schallenging when not only you can't care for
the people you love, but it'schallenging when you can't even care for yourself.
Um. Was he able to articulatethat to you at any stage in
a manner of speaking, Yes,like say, we discussed everything, but
(05:03):
it was hard for him to trulygrasp what was happening with him because it
was so quick, and I knowit bothered him, but he never at
any time expressed frustration until the veryend. Several weeks before he passed,
(05:28):
he looked at me and he said, I can't wait until I can get
out of this bed and do thison my own. He knew very clearly,
was a very intelligent man, andhe knew very clearly what was happening,
but it was a knowing that itdidn't allow for him to accept it.
(05:53):
And he was very gracious about it. He was very appreciative of everything
that everyone did for him. Heloved when the family was around him,
but getting that specific. Other thana few comments along those same lines,
he didn't really want to go intoit too much because he would really have
(06:15):
to acknowledge and admit it, andhe was going to fight it till the
end. He's a fighter a So, so, Kathleen, why don't we
discuss your journey as a caregiver andalso as a daughter, you know,
could you share about your mom's journeyand what you saw from that vantage point
(06:39):
as well as your dad? Sure? So, you know, my mom's
journey was a little bit longer thanyours, your husband's. It was probably
about ten years. She was sixtytwo when we started noticing some changes.
And she was still working at thatpoint, and they were going to have
a new computer system and she said, oh, I'm just going to tire.
(07:00):
That's just too complicated for me.Now We're like, oh, okay,
Mom, that sounds okay. Youknow, I understand you're not wanting
to start something new. But veryshortly after we started to see some other
changes. You know, she wouldforget where she parked her car, you
know, And at first it's like, oh, everybody does that once in
a while. But then when shereally had to call my father to kind
of come get her, and theyhad to go through the whole parking lot.
(07:23):
So there was quite a few yearsof that. I would say probably
about three or four years where shewas just sort of covering everything up and
she actually did not want to talkabout it at all, and if you
brought it up, she'd get reallyreally angry and put it off on you.
You're doing this because you're mean,this is not me. There's nothing
wrong with me. So we neverfor a long time couldn't get her to
(07:46):
go see someone or talk about it, and so then my dad would cover
for her as well, so thatwe wouldn't push the subject because the more
you pushed it, the angrier shewould get, and then she would say
it's all your fault and not talkto you. So I sort of made
(08:07):
the decision, well, I'm notgoing to be that person. I'm just
going to go along with things untilit's obvious and you need more help.
So that happened I would say probablyaround twenty fourteen fifteen is when it really
got more apparent. I ended upgetting pregnant around that time, and she
was really excited about that, butwould forget that I was pregnant until I
(08:28):
would come over and she'd be superexcited that I was going to have a
baby. And then after about twentyfifteen, about five years into everything,
it really started to become more apparent. She had a couple of episodes where
she wouldn't get out of bed andshe would cry a lot, and so
finally my dad's like, Okay,we really need to do something, and
(08:50):
that's when we got to the neurologistand got the diagnosis, which me and
my family knew was going to happen. But I think it was probably really
hard for my dad because he knewit was too but he just didn't want
to admit it either because it tohim somehow. I think he felt like
he had failed somehow, so itwas tough for him. But once we
(09:13):
got there, we got around somemedicines to help sort of the emotional side
of things and got her a littlemore stable, and she had a few
more years where she was pretty interactive, but a steady sort of decline,
and she really enjoyed, you know, family time, and that really brightened
(09:33):
her all the time. And thenshe passed away in twenty twenty, so
we had about a ten year journey. Wow. Wow, thank you so
much for sharing that. So again, same question as I posted to Alice
Joe. What do you find,at least from your point of view as
a child, definitely an adult child, some of the challenges that you face
(10:00):
care for your mom. I thinkprobably one of the hardest things was sort
of that sandwich generation. I think, trying to manage time, get everybody
what I felt they needed, andjust trying to sort of find the balance
between all of those things to makesure that I could be a good mother,
(10:20):
I could be a good daughter andstill have a life in my own,
which I didn't for a while.Yeah, yeah, I would,
I would, I would have.I would assume that there there's a lot
going on in terms of the caregivingaspect, physically, emotionally, mentally,
(10:41):
you're really invested in your loved one'scare. Let me ask you both,
and you know, um, I'llask you first, Kathleen and then Alice
Joe. What surprised you the mostabout your mom's journey with dementia. There
were a few things. I thinkInitially it was sort of getting the diagnosis,
(11:09):
getting into sort of the medical systemwith a diagnosis, and really the
very little guidance and information that you'regiven, sort of like, here's your
diagnosis, here are some medicines.We'll see in a couple of months and
see how it goes. So Ithink just trying to figure out what's the
(11:31):
next step, what should we do, When do we intervene more, when
do we don't. Just there werea lot of questions that the neurologist and
the primary care doctor in the beginningreally weren't really helpful. The other thing
that really surprised me about the dementiaitself was the mood swings and the huge
personality change that occurred and the personthat she was she just wasn't anymore.
(12:03):
And I think that was very surprisingto me that she's not going to just
be this cute, little old ladywho says funny things. But she you
know, became very angry with alot of things, and you know,
lashed out quite a bit, andso it was that was surprising and very
difficult to help care for her.But you know, that was one of
(12:26):
the stages, and then that passesas well, and you'd get into the
next stage. So I think thosewere probably the two most surprising things,
right, And how about yourself,Alice Joe, what would surprise you to
most about your husband's journey with dementia. Well, when we got the diagnosis,
(12:48):
as I said before, we weren'tnecessarily surprised, but we were encouraged
because these specialists and everyone said wecould have ten, fifteen, twenty years
because it was slow to progress.So my husband and I made plans,
we had bucket lists. We weregoing to do what we could and have
(13:11):
as much as rich a life aswe could together, and none of that
really happened because of how quickly hedeclined. It was not month by month.
Sometimes it was a week by week, and sometimes he would be a
different person one day and a totallydifferent person the next day with what he
(13:37):
was able to do. So thatwas a huge surprise, and the fact
that the specialists had no idea whatto do about it because this was not
normal, which which if they wouldsay it that way, and so they
really didn't have any insights for me. The one place that I did go
(14:03):
it was huge, was the Alzheimer'sAssociation. They were amazing and I got
so much good advice and so manyresources and good information from them. So
that was the biggest surprise for me. Oh that's great. I, you
know, just kind of listening toKathleen, I think many times when she's
(14:26):
right, you get these diagnoses.You know, you would almost hope there's
kind of a playbook of what thingslook like as you move forward, but
you're just kind of, you know, giving a bottle of water and just
go run a hundred miles out there, and you got to kind of figure
it out. So, you know, definitely I tipped my head off to
you, Kathleen, because there's alot of on the fly thinking and add
(14:50):
living that you have to do.It sounds like and no two cases are
the same, but in Alice's case, it looked like you got some support
from that Alzheimer's Association and sometimes thathelps. So I, you know,
I definitely want to commend you bothbecause I hope in today's podcasts, you
know, the two of you canbe kind of a beacon of light for
(15:13):
others that are starting this journey andat least get some kind of understanding on
what it looks like moving forward.I can imagine that both of you have
dealt with a good amount of stressand anxiety in dealing with your loved ones.
You know, what could you tellour audience today as caregivers that you
(15:37):
can do or what did you doto kind of alleviate some of that anxiety
and that stress? Alice, howdid you you know, as what we
call caregiver burnout, you want tobe there and you're constantly in the trenches,
but you're only human and you breatheoxygen and need to sleep and eat
and kind of take care of yourself. So what did you do to take
(15:58):
care of yourself and take care ofsome of that stress. Well, after
a while, I needed a littleassistance in the house because I could no
longer get out and be confident thatmy husband would be safe. So I
contacted the Visiting Angels and I hadsomebody come in a couple of times a
(16:21):
week for a couple of hours soI could get away from the house and
get some shopping done and just takea walk if I needed to. At
first, that was very difficult becauseI would walk out and then I would
immediately want to turn around and getright back in there again. But over
time I was pretty okay with it, and I appreciated all the support that
(16:44):
they gave. I was also veryfortunate to have a whole network of people
family and friends and church community whowould have been right there if I had
ever needed anything. And while Iapp created that, I think I managed
to keep a decent balance of kindof self help to relieve my stress and
(17:11):
being there for my husband twenty fourto seven. That's that's awesome. That
is awesome. How about yourself,Kathleen, Oh, you know, I
think I battled the stress and anxietyin the beginning, probably not as good
as I should have. And lookingback, I think I got into some
of the social media outlets to beable to see what other people were doing
(17:36):
and see how they dealt with it, and just seeing their stories and realizing,
you know what, I'm not theonly one doing this and I'm not
doing a bad job. And youknow, I think I had a lot
of anxiety for my father. SoI would create standing dates so I would
go over there, you know,twice a week at least with my son,
who made everybody feel better. Andso if my dad wasn't anxious,
(18:00):
than I felt better. And sojust creating that time to sort of carve
out specifically when I was going tobe there, and then you know,
coming in at other times as well, but I think just realizing that you
get to a point, especially whenit's a long journey of you know what,
you have to sort of just takeall of this as it comes and
(18:22):
really just understanding I'm doing the bestfor them. This is not going to
go on forever, and so Ineed to give her the best life she
can have. And that, really, I think is what got me through
quite a bit of the stress,is just knowing that I was doing the
best I could for her, andher intention was always to be at home,
to stay home, to not haveto be put anywhere. That was
(18:45):
one of her biggest fears, SoI think being able to honor that made
a big difference. That's awesome andI appreciate you both sharing that. I
hear that often in these caregiver situationswhat Alice described as that guilt of walking
out the door and then feeling youhave to turn back because you have to
do it all, and kind ofletting that go so you can. You
(19:10):
know, many of these caregivers andsupport systems are truly vessels that help you
help others. So again, thankyou for sharing sharing that. Um,
that's a perfect segue because you bothexperienced hospice services through this journey with dementia.
Could you both kind of share whatthat experience was like and what did
(19:36):
hospice services provide to your mom,Kathleen, and to your husband Alice in
regards specially specifically to their dementia andhow did it help help them and help
you? And now I'll go withAlice well um being a part of the
(19:59):
hospice or organization made a huge difference. They were an outlet to answer our
questions. Their support was unparalleled twentyfour seven. You just pick up the
phone, they will tell you whatyou need to hear, support you in
whatever way happens. They were rightright at the door when I needed something.
(20:23):
They came on time and on aregular basis. The different professionals and
took care of my husband. Hewas very comfortable with them that they were
always positive and made him feel comfortable, especially when they had to care help
me to care for his needs becauseI couldn't do it by myself. And
(20:47):
that was huge because he was avery private person, outgoing but private,
and he appreciated them being so welcomingand love to him. And the nurse
is the several times that I hadto call in the middle of the night.
It was never a problem. Itwas just something that I didn't have
(21:10):
to worry about. That's awesome.How about yourself, Kathleen, Well,
I definitely echo what you said,and you know that the fact that they
really just were there whenever you neededthem. We started with hospice right in
April of twenty twenty, so rightin the beginning of the pandemic, so
(21:34):
it was really almost it was itwas really a relief to be able to
get some help at that point andhave them come into the house, and
just even from the initial assessment,you know, just the feeling of you
can almost breathe because you know someoneis going to be there no matter what's
going on in the world around usat that point, and that they were
(21:57):
still going to come into the home, they were still going to be doing
the things that we needed help with. And again, just being able to
call them and just laying out sortof the path that was going to be
in front of us for a littlewhile really helped my dad tremendously to sort
of see what that was going tobe, and he was able to get
(22:18):
one on one time with the nursesand the aids who were coming in and
they were really able to just chatwith him a little bit because at that
point my mom was pretty well bedboundand sleeping most of the time, so
he I think got the benefit oftheir company and their care, maybe even
more than my mother did at thatpoint. But that's what we needed,
and so that was really huge thathe was able to create a relationship with
(22:41):
some of the providers and you know, really be there for us when we
needed. We also utilize some ofthe tele counseling that was available, so
that was really helpful for my familyto get through some of the hard spots.
Oh, that's awesome. That isawesome. I know, in twenty
(23:02):
twenty and pretty much the beginning ofthe pandemic, it was very difficult for
caregivers, at least professional caregivers toget out to families. So you know,
even utilizing the technology to make surethat they were still there for your
mom, your dad and yourself andthe family. It's really great to hear
that. You know, for bothof you, your stories both are so
(23:29):
so rich and so so deep.Are there any lessons learned that you could
share with caregivers out here that arecaring for a loved one with dementia,
because it definitely sounds like you werein it from beginning to end. And
you know, any gems that youcan share with our audience, Alice,
(23:55):
yes, um, I don't knowhow much of a gem it is to
be gentle and patient with yourself andalso to be gentle and patient with your
family, your children. Everyone dealswith this in their own way, and
relationships change and you have to gowith it as best you can. Friends
(24:23):
are always very helpful, but sometimesthey assume, for example, if you're
having a lunch with someone and you'rehaving a good time, you know,
and you're able to relax a littlebit, and they're saying, oh,
you're handling this so well, Well, you know you're not. The outside
(24:45):
is one story, but what's happeninginside is total turmoil and chaos and pain,
and that doesn't go away. Justbe gentle, great great great prob
of voiceom there. Thank you somuch. What about yourself, Kathleen,
I think you know, Alice,you really definitely you said that very well
(25:07):
and I do agree. You know, you really have to just sort of
do the best you can. Youknow, the old adage to do the
best you can with what you have, and take each moment for what it
is. Don't try and look toofar in the future. Don't don't worry
about what happened yesterday because or evenfive minutes ago, sometimes because that's gone.
(25:30):
You know, Just to really bepresent in the moment with your family
and with your loved one. Behonest with people who ask you how you
are it's okayis hey I'm terrible,and get the support. So I think
just really being present, being opento help, being open to trying new
(25:52):
things, and just because you didit one way one day doesn't mean it's
going to work the same way thenext day. And just to really enjoy
the parts that you can well saidLadies. Well said, well, you
know, the takeaway that we ouraudience can get from this is that caregivers
(26:12):
are an important part of the journeywith dementia, whether it be personal caregivers
such as yourselves, family members,or even professional caregivers. When the condition
of dementia progresses and hospice care iseven needed, it can be a valuable
resource to families and their loved ones. So again, I want to thank
you for both sharing your powerful stories. This was truly an amazing testimony from
(26:38):
you. Both and thank you somuch again for your presence today and your
participation. We like to thank theJohn and Kathy Belcher Institute for their generous
support of our community outreach and educationprograms. Thank you so much, Boo
Good afternoon and welcome back to Life, Death and What Matters in Between.
I'm your host, Perry Limes,and I am joined today by Alice,
Joe Weaver, and Kathleen Rawlings.Thank you ladies for joining us today and
on today's episode, we'll be doingthe journey of dem with dementia a caregiver's
(00:31):
perspective, as we've done in thepast episodes. I'd like to welcome Alice,
Joe, and Kathleen, but beforewe get started, I just want
to you know, learning about yourpersonal stories as caregivers and every episode to
(00:51):
help us better understand an individual's journeywith dementia. We've been discussing a composite
case scenario and talking about Joe,our sixty six year old African American male
who's been dealing with dementia for acouple of years, and his wife of
forty years, Veronica, who ishis primary caregiver. Joan Veronica have adult
(01:14):
daughters who live out of state,but are very active in both Joe and
Veronica's lives. Today, we aregrateful to learn about caregivers from both a
wife who cared for her husband anda daughter who cared for her mother.
So with that, Alice Joe,let's start with your journey as a wife
and a caregiver. Thank you somuch for joining us. Can you share
(01:37):
a little bit about your husband's journeywith dementia. Well, my husband was
diagnosed in August of two thousand andnineteen, I'm sorry, twenty and twenty,
and in retrospect, there were symptomsand clues much sooner than that,
(02:00):
I would say, probably two orthree years. And at the time he
was diagnosed, it's not that itwas a shock because by that point we
thought that there was something that weneeded to address. But he passed away
at last November, and that's onlya year and a half. And our
(02:21):
understanding from the specialists and everybody elseand everything that we read was that dementia
and Alzheimer's is very slow progressive,and we did not find that to be
the case at all. So ourjourney was very difficult and it was like
a roller coaster ride, truly.There were things that happened very quickly and
(02:44):
it seemed a time that we wererunning to catch up. Wow. That's
so. With that, what weresome of the biggest challenges that you face
with your husband as you started tosee things declimb. I had to get
very creative because I was determined thatmy husband would live his best life.
(03:06):
And we communicated all the time.We were very honest about what was going
on and how we were feeling andwhat we were going to do. And
at no time did I ever makea decision or make a movement that he
didn't say, okay, that itwas all right with him. The challenge
was trying to keep his life asnormal as possible as things were progressing.
(03:35):
When he wasn't able to walk asmuch, when his speech started to be
difficult, when he couldn't write,when he couldn't write a check, and
I had to step in. Iasked, do you want me to do
it? And he said yes.When he couldn't read anymore, when he
couldn't do his affirmations that he'd beendoing for like nineteen years, he couldn't.
(04:00):
It was and I tried in everyway I could to make things possible,
with books on tape, walkers whenhe needed it, different types of
walkers, different foods that he wasable to handle. That all of those
(04:21):
things we were a great challenge.Wow. And and I know you were
talking about his articulation was he ableto articulate with you some of his own
challenges and what he felt like hecouldn't because obviously he's you know, being
a husband, being a father.You know, he's been providing and caring
(04:43):
his whole life. And then it'schallenging when not only you can't care for
the people you love, but it'schallenging when you can't even care for yourself.
Um. Was he able to articulatethat to you at any stage in
a manner of speaking, Yes,like say, we discussed everything, but
(05:03):
it was hard for him to trulygrasp what was happening with him because it
was so quick, and I knowit bothered him, but he never at
any time expressed frustration until the veryend. Several weeks before he passed,
(05:28):
he looked at me and he said, I can't wait until I can get
out of this bed and do thison my own. He knew very clearly,
was a very intelligent man, andhe knew very clearly what was happening,
but it was a knowing that itdidn't allow for him to accept it.
(05:53):
And he was very gracious about it. He was very appreciative of everything
that everyone did for him. Heloved when the family was around him,
but getting that specific. Other thana few comments along those same lines,
he didn't really want to go intoit too much because he would really have
(06:15):
to acknowledge and admit it, andhe was going to fight it till the
end. He's a fighter a So, so, Kathleen, why don't we
discuss your journey as a caregiver andalso as a daughter, you know,
could you share about your mom's journeyand what you saw from that vantage point
(06:39):
as well as your dad? Sure? So, you know, my mom's
journey was a little bit longer thanyours, your husband's. It was probably
about ten years. She was sixtytwo when we started noticing some changes.
And she was still working at thatpoint, and they were going to have
a new computer system and she said, oh, I'm just going to tire.
(07:00):
That's just too complicated for me.Now We're like, oh, okay,
Mom, that sounds okay. Youknow, I understand you're not wanting
to start something new. But veryshortly after we started to see some other
changes. You know, she wouldforget where she parked her car, you
know, And at first it's like, oh, everybody does that once in
a while. But then when shereally had to call my father to kind
of come get her, and theyhad to go through the whole parking lot.
(07:23):
So there was quite a few yearsof that. I would say probably
about three or four years where shewas just sort of covering everything up and
she actually did not want to talkabout it at all, and if you
brought it up, she'd get reallyreally angry and put it off on you.
You're doing this because you're mean,this is not me. There's nothing
wrong with me. So we neverfor a long time couldn't get her to
(07:46):
go see someone or talk about it, and so then my dad would cover
for her as well, so thatwe wouldn't push the subject because the more
you pushed it, the angrier shewould get, and then she would say
it's all your fault and not talkto you. So I sort of made
(08:07):
the decision, well, I'm notgoing to be that person. I'm just
going to go along with things untilit's obvious and you need more help.
So that happened I would say probablyaround twenty fourteen fifteen is when it really
got more apparent. I ended upgetting pregnant around that time, and she
was really excited about that, butwould forget that I was pregnant until I
(08:28):
would come over and she'd be superexcited that I was going to have a
baby. And then after about twentyfifteen, about five years into everything,
it really started to become more apparent. She had a couple of episodes where
she wouldn't get out of bed andshe would cry a lot, and so
finally my dad's like, Okay,we really need to do something, and
(08:50):
that's when we got to the neurologistand got the diagnosis, which me and
my family knew was going to happen. But I think it was probably really
hard for my dad because he knewit was too but he just didn't want
to admit it either because it tohim somehow. I think he felt like
he had failed somehow, so itwas tough for him. But once we
(09:13):
got there, we got around somemedicines to help sort of the emotional side
of things and got her a littlemore stable, and she had a few
more years where she was pretty interactive, but a steady sort of decline,
and she really enjoyed, you know, family time, and that really brightened
(09:33):
her all the time. And thenshe passed away in twenty twenty, so
we had about a ten year journey. Wow. Wow, thank you so
much for sharing that. So again, same question as I posted to Alice
Joe. What do you find,at least from your point of view as
a child, definitely an adult child, some of the challenges that you face
(10:00):
care for your mom. I thinkprobably one of the hardest things was sort
of that sandwich generation. I think, trying to manage time, get everybody
what I felt they needed, andjust trying to sort of find the balance
between all of those things to makesure that I could be a good mother,
(10:20):
I could be a good daughter andstill have a life in my own,
which I didn't for a while.Yeah, yeah, I would,
I would, I would have.I would assume that there there's a lot
going on in terms of the caregivingaspect, physically, emotionally, mentally,
(10:41):
you're really invested in your loved one'scare. Let me ask you both,
and you know, um, I'llask you first, Kathleen and then Alice
Joe. What surprised you the mostabout your mom's journey with dementia. There
were a few things. I thinkInitially it was sort of getting the diagnosis,
(11:09):
getting into sort of the medical systemwith a diagnosis, and really the
very little guidance and information that you'regiven, sort of like, here's your
diagnosis, here are some medicines.We'll see in a couple of months and
see how it goes. So Ithink just trying to figure out what's the
(11:31):
next step, what should we do, When do we intervene more, when
do we don't. Just there werea lot of questions that the neurologist and
the primary care doctor in the beginningreally weren't really helpful. The other thing
that really surprised me about the dementiaitself was the mood swings and the huge
personality change that occurred and the personthat she was she just wasn't anymore.
(12:03):
And I think that was very surprisingto me that she's not going to just
be this cute, little old ladywho says funny things. But she you
know, became very angry with alot of things, and you know,
lashed out quite a bit, andso it was that was surprising and very
difficult to help care for her.But you know, that was one of
(12:26):
the stages, and then that passesas well, and you'd get into the
next stage. So I think thosewere probably the two most surprising things,
right, And how about yourself,Alice Joe, what would surprise you to
most about your husband's journey with dementia. Well, when we got the diagnosis,
(12:48):
as I said before, we weren'tnecessarily surprised, but we were encouraged
because these specialists and everyone said wecould have ten, fifteen, twenty years
because it was slow to progress.So my husband and I made plans,
we had bucket lists. We weregoing to do what we could and have
(13:11):
as much as rich a life aswe could together, and none of that
really happened because of how quickly hedeclined. It was not month by month.
Sometimes it was a week by week, and sometimes he would be a
different person one day and a totallydifferent person the next day with what he
(13:37):
was able to do. So thatwas a huge surprise, and the fact
that the specialists had no idea whatto do about it because this was not
normal, which which if they wouldsay it that way, and so they
really didn't have any insights for me. The one place that I did go
(14:03):
it was huge, was the Alzheimer'sAssociation. They were amazing and I got
so much good advice and so manyresources and good information from them. So
that was the biggest surprise for me. Oh that's great. I, you
know, just kind of listening toKathleen, I think many times when she's
(14:26):
right, you get these diagnoses.You know, you would almost hope there's
kind of a playbook of what thingslook like as you move forward, but
you're just kind of, you know, giving a bottle of water and just
go run a hundred miles out there, and you got to kind of figure
it out. So, you know, definitely I tipped my head off to
you, Kathleen, because there's alot of on the fly thinking and add
(14:50):
living that you have to do.It sounds like and no two cases are
the same, but in Alice's case, it looked like you got some support
from that Alzheimer's Association and sometimes thathelps. So I, you know,
I definitely want to commend you bothbecause I hope in today's podcasts, you
know, the two of you canbe kind of a beacon of light for
(15:13):
others that are starting this journey andat least get some kind of understanding on
what it looks like moving forward.I can imagine that both of you have
dealt with a good amount of stressand anxiety in dealing with your loved ones.
You know, what could you tellour audience today as caregivers that you
(15:37):
can do or what did you doto kind of alleviate some of that anxiety
and that stress? Alice, howdid you you know, as what we
call caregiver burnout, you want tobe there and you're constantly in the trenches,
but you're only human and you breatheoxygen and need to sleep and eat
and kind of take care of yourself. So what did you do to take
(15:58):
care of yourself and take care ofsome of that stress. Well, after
a while, I needed a littleassistance in the house because I could no
longer get out and be confident thatmy husband would be safe. So I
contacted the Visiting Angels and I hadsomebody come in a couple of times a
(16:21):
week for a couple of hours soI could get away from the house and
get some shopping done and just takea walk if I needed to. At
first, that was very difficult becauseI would walk out and then I would
immediately want to turn around and getright back in there again. But over
time I was pretty okay with it, and I appreciated all the support that
(16:44):
they gave. I was also veryfortunate to have a whole network of people
family and friends and church community whowould have been right there if I had
ever needed anything. And while Iapp created that, I think I managed
to keep a decent balance of kindof self help to relieve my stress and
(17:11):
being there for my husband twenty fourto seven. That's that's awesome. That
is awesome. How about yourself,Kathleen, Oh, you know, I
think I battled the stress and anxietyin the beginning, probably not as good
as I should have. And lookingback, I think I got into some
of the social media outlets to beable to see what other people were doing
(17:36):
and see how they dealt with it, and just seeing their stories and realizing,
you know what, I'm not theonly one doing this and I'm not
doing a bad job. And youknow, I think I had a lot
of anxiety for my father. SoI would create standing dates so I would
go over there, you know,twice a week at least with my son,
who made everybody feel better. Andso if my dad wasn't anxious,
(18:00):
than I felt better. And sojust creating that time to sort of carve
out specifically when I was going tobe there, and then you know,
coming in at other times as well, but I think just realizing that you
get to a point, especially whenit's a long journey of you know what,
you have to sort of just takeall of this as it comes and
(18:22):
really just understanding I'm doing the bestfor them. This is not going to
go on forever, and so Ineed to give her the best life she
can have. And that, really, I think is what got me through
quite a bit of the stress,is just knowing that I was doing the
best I could for her, andher intention was always to be at home,
to stay home, to not haveto be put anywhere. That was
(18:45):
one of her biggest fears, SoI think being able to honor that made
a big difference. That's awesome andI appreciate you both sharing that. I
hear that often in these caregiver situationswhat Alice described as that guilt of walking
out the door and then feeling youhave to turn back because you have to
do it all, and kind ofletting that go so you can. You
(19:10):
know, many of these caregivers andsupport systems are truly vessels that help you
help others. So again, thankyou for sharing sharing that. Um,
that's a perfect segue because you bothexperienced hospice services through this journey with dementia.
Could you both kind of share whatthat experience was like and what did
(19:36):
hospice services provide to your mom,Kathleen, and to your husband Alice in
regards specially specifically to their dementia andhow did it help help them and help
you? And now I'll go withAlice well um being a part of the
(19:59):
hospice or organization made a huge difference. They were an outlet to answer our
questions. Their support was unparalleled twentyfour seven. You just pick up the
phone, they will tell you whatyou need to hear, support you in
whatever way happens. They were rightright at the door when I needed something.
(20:23):
They came on time and on aregular basis. The different professionals and
took care of my husband. Hewas very comfortable with them that they were
always positive and made him feel comfortable, especially when they had to care help
me to care for his needs becauseI couldn't do it by myself. And
(20:47):
that was huge because he was avery private person, outgoing but private,
and he appreciated them being so welcomingand love to him. And the nurse
is the several times that I hadto call in the middle of the night.
It was never a problem. Itwas just something that I didn't have
(21:10):
to worry about. That's awesome.How about yourself, Kathleen, Well,
I definitely echo what you said,and you know that the fact that they
really just were there whenever you neededthem. We started with hospice right in
April of twenty twenty, so rightin the beginning of the pandemic, so
(21:34):
it was really almost it was itwas really a relief to be able to
get some help at that point andhave them come into the house, and
just even from the initial assessment,you know, just the feeling of you
can almost breathe because you know someoneis going to be there no matter what's
going on in the world around usat that point, and that they were
(21:57):
still going to come into the home, they were still going to be doing
the things that we needed help with. And again, just being able to
call them and just laying out sortof the path that was going to be
in front of us for a littlewhile really helped my dad tremendously to sort
of see what that was going tobe, and he was able to get
(22:18):
one on one time with the nursesand the aids who were coming in and
they were really able to just chatwith him a little bit because at that
point my mom was pretty well bedboundand sleeping most of the time, so
he I think got the benefit oftheir company and their care, maybe even
more than my mother did at thatpoint. But that's what we needed,
and so that was really huge thathe was able to create a relationship with
(22:41):
some of the providers and you know, really be there for us when we
needed. We also utilize some ofthe tele counseling that was available, so
that was really helpful for my familyto get through some of the hard spots.
Oh, that's awesome. That isawesome. I know, in twenty
(23:02):
twenty and pretty much the beginning ofthe pandemic, it was very difficult for
caregivers, at least professional caregivers toget out to families. So you know,
even utilizing the technology to make surethat they were still there for your
mom, your dad and yourself andthe family. It's really great to hear
that. You know, for bothof you, your stories both are so
(23:29):
so rich and so so deep.Are there any lessons learned that you could
share with caregivers out here that arecaring for a loved one with dementia,
because it definitely sounds like you werein it from beginning to end. And
you know, any gems that youcan share with our audience, Alice,
(23:55):
yes, um, I don't knowhow much of a gem it is to
be gentle and patient with yourself andalso to be gentle and patient with your
family, your children. Everyone dealswith this in their own way, and
relationships change and you have to gowith it as best you can. Friends
(24:23):
are always very helpful, but sometimesthey assume, for example, if you're
having a lunch with someone and you'rehaving a good time, you know,
and you're able to relax a littlebit, and they're saying, oh,
you're handling this so well, Well, you know you're not. The outside
(24:45):
is one story, but what's happeninginside is total turmoil and chaos and pain,
and that doesn't go away. Justbe gentle, great great great prob
of voiceom there. Thank you somuch. What about yourself, Kathleen,
I think you know, Alice,you really definitely you said that very well
(25:07):
and I do agree. You know, you really have to just sort of
do the best you can. Youknow, the old adage to do the
best you can with what you have, and take each moment for what it
is. Don't try and look toofar in the future. Don't don't worry
about what happened yesterday because or evenfive minutes ago, sometimes because that's gone.
(25:30):
You know, Just to really bepresent in the moment with your family
and with your loved one. Behonest with people who ask you how you
are it's okayis hey I'm terrible,and get the support. So I think
just really being present, being opento help, being open to trying new
(25:52):
things, and just because you didit one way one day doesn't mean it's
going to work the same way thenext day. And just to really enjoy
the parts that you can well saidLadies. Well said, well, you
know, the takeaway that we ouraudience can get from this is that caregivers
(26:12):
are an important part of the journeywith dementia, whether it be personal caregivers
such as yourselves, family members,or even professional caregivers. When the condition
of dementia progresses and hospice care iseven needed, it can be a valuable
resource to families and their loved ones. So again, I want to thank
you for both sharing your powerful stories. This was truly an amazing testimony from
(26:38):
you. Both and thank you somuch again for your presence today and your
participation. We like to thank theJohn and Kathy Belcher Institute for their generous
support of our community outreach and educationprograms. Thank you so much, Boo
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