November 30, 2023 • 21 mins
Care partner, husband, and father, Bo Bienvenu joins Dana for a moving conversation about his experiences caring for his wife Maddie. Dana and Bo discuss the prevalence of Alzheimer’s disease and other dementias in the U.S., and how that’s resulted in a growing number of male care partners. Bo opens up about how he cares for himself during the process, how Maddie’s journey has helped to deepen his faith, and what Alzheimer’s taught him about the difference between selflessness and service.
Do you have a question for Dana? Email her directly at thememorywhisperer@gmail.com or visit www.thememorywhisperer.com for additional resources.
The Memory Whisperer is written and produced by Dana Territo, with help from editor Blake Langlinais. Additional production support from Ryan Martz and Julia Weaver. Special Thanks to Michael Andrews, a person with dementia, and Innovations in Dementia, CIC for our theme music. Logo graphics by Xdesign.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:06):
It started with Peggy, someone with Alzheimer's who never knew
my name and who I companion at her nursing home
residence for twenty two years. Her influence in my life
and the values I received from growing up with grandparents
living in our home are the guiding forces and my
love and advocacy for the Alzheimer's population. I am a
(00:27):
newspaper columnist for The Advocate in Baton Rouge, Louisiana, and
the author of What My Grandchildren Taught Me About Alzheimer's Disease,
And now I'm launching a podcast. Hi, you're listening to
Dana Tito the Memory Whisper. Join me in these podcasts
as we engage in thoughtful conversations about Alzheimer's disease and
(00:49):
other dementias. Over eleven million Americans provide unpaid care for
people with Alzheimer's or other dementias. Twenty two alone, unpaid
caregivers provided an estimated eighteen billion hours of care, valued
at three hundred and thirty nine point five billion dollars.
(01:10):
More than six million Americans are living with Alzheimer's or
other related dementias, and by twenty fifty, this number is
projected to be thirteen million. Talking today about male caregivers,
they're a demographically diverse group. They will do whatever is
necessary for those in their care. But when we think
(01:30):
about a caregiver for someone with dementia, a picture of
a woman normally comes to mind.
Speaker 2 (01:35):
For most of us. After all, approximately two thirds of
caregivers are female. But what about the other third? What
do we know about men who find themselves in this
caregiving role today? I'm happy to welcome a male caregiver,
mister Bobian Venue, who lives in Baton Rouge, Louisiana. He's
seventy eight years old, a Navy veteran and a Louisiana
(01:58):
State University alum Go Tigers. Bo retired from Geo Heat
Exchangers and Field Service and as past president of the
bat and Reach Chapter of the Cajun French Music Association
and a past eucharistic minister and lector at Saint John
the Evangelist Church in Prairieville, Louisiana. Bou has been married
to Matti Buriette Bienvenue for fifty six years and has
(02:20):
been her caregiver for five years in counting, including the
last year completely full time. So I'm so happy to
have you here with me. Bo Welcome, thanks for joining me.
Speaker 3 (02:30):
Appreciate your interviewing me.
Speaker 2 (02:32):
Can you share your story, Bou with our listeners? When
did you first start to notice some deficits with Maddie.
Speaker 3 (02:40):
We started to notice something probably in twenty seventeen, and
it got progressively worse, to the point where in twenty
nineteen we were concerned enough to go see a neurologist,
and at that point he kind of blew it off
and didn't take it very seriously, so we just let
things progress point that they got really bad and got
(03:03):
a formal diagnosis in twenty to twenty. I believe it's
been one of the more difficult things that I've ever
faced in my life. You never know what's coming. I'm
the type of person who likes to be able to
take care of whatever shows up, and when you don't
know what's coming and don't know how to handle it
it I found it much more stressful earlier than I
(03:26):
do today. I do a better job today now that
I've learned some things than I did before, but it's
been a very stressful and at the same time a
very rewarding experience.
Speaker 2 (03:37):
Do you see there's a difference in the male caregiving
role in a female caregiving role.
Speaker 3 (03:43):
I don't know that there would be, because I think
it requires paying close attention to the needs of the person,
to the needy person in responding in an appropriate manner.
So I think from that perspective the role would be similar.
And outside of that, I don't know what I do
(04:04):
differently than what she would do if our roles were reversed.
Speaker 2 (04:08):
So it's typical for males kind of they want to
fix stuff. Was that your first inclination when Maddie was diagnosed?
You wanted to fix her disease or something like that?
Speaker 3 (04:18):
Absolutely, you know, I wanted to help or go through
a logical sequence of events when it came time to
make decisions and think about things clearly, and I didn't
understand why that wasn't happening and that wasn't possible. So
that was very frustrating for me. And I'm one of
the fixers, you know, I was born and raised and
(04:39):
not being able to do that has been a real
challenge for me.
Speaker 2 (04:44):
So what is your biggest challenge like right now with
her care?
Speaker 3 (04:49):
Well, we have more than just the one issue she
had chronic back pain, which limits her mobility severely. She
can have very much trouble walking, can't walk on her
own right now. So we have a combination of that
plus the dementia, and dealing with the two of them
together is probably a big challenge. I think either one
by themselves would almost be like going to Disneyland compared
(05:11):
to what we're doing right now.
Speaker 2 (05:14):
Well, tell us a little bit about Maddie. What is
she like?
Speaker 3 (05:18):
She is an absolutely wonderful person. When I met her
fifty six or probably sixty years ago, I was completely smitten.
She graduated from the original Lady of the Lake Nursing School,
and she was a registered nurse. Did hospital work, did
home health work, did hospice work, did patient I don't
(05:42):
know what you call it, patient assessment. And I think
that her whole life has been focused on care of
other people. She did a wonderful job with our two boys,
and did an incredible job putting up with all of
my garbage over all of the years. I didn't deserve
to still have her, but I'm sure glad I do.
Speaker 2 (06:00):
Do you consider I mean, did it hit you after
she was diagnosed that you were going to be a caregiver?
Speaker 3 (06:06):
There was never any doubt in my mind that I
would be her caregiver. Like I told her, we almost
ought to be happy about this because we signed up
for better or worse sickness and health, richer or poor,
and we've been through everything but richer, So that's got
to be right around the corner.
Speaker 2 (06:21):
Oh wow wow. So have you had difficulty asking for
help or enlisting help during her care.
Speaker 3 (06:31):
I'm not a big person. I'm not a big help asker.
That's one of my core character defects is not asking
for help. I feel like I ought to be able
to do everything for myself, so for the first few
years I just refused to do that. I had people
offering I never took them up on it, and we
got to the point where it was absolutely necessary. And
(06:53):
now we have a sitter in the house three days
a week for five hours a day so I can
do my doctor's appointments, get out and run the air
as I have to do, and then periodically go visit
with some friends.
Speaker 1 (07:04):
Have the resources been available to you to help you
through your journey.
Speaker 3 (07:08):
Absolutely. I got some resources through a Centim parish council
on aging. I've gotten some information from Alzheimer's Association in
Baton Rouge. I've read your book in the Thirty Six
Hour Day, plus two other books, all of which help
me immenseally and each one differently, and I would strongly
recommend to anyone else they get as educated as possible
(07:30):
about their specific situation.
Speaker 2 (07:33):
That's great. So many caregivers that's kind of the last
thing they do to get educated, but really it should
be the first thing they should do to get educated
so they can better manage the disease.
Speaker 3 (07:45):
Yeah. Just learning what's going on and finally coming to
an understanding of how that progresses and how it causes
the person to behave and act has helped me a
tremendous amount, with the being trying to be able to
remain calm and empathetic and compassion all at the same time,
(08:06):
which I had a difficulty with earlier.
Speaker 1 (08:09):
So when you have your paid assistance, your paid caregivers
at home, are you allowed I mean, are you giving
yourself the attention you need with self care? Are you
just running errands and doing the things.
Speaker 2 (08:20):
You need to do.
Speaker 3 (08:22):
I mostly run errands, but I got a couple old
friends that are also kind of disabled, and we used
to get together every two weeks, and now I use
that opportunity to get together with them and we have
a lunch together probably once a month now and I
hadn't been able to do anything like that. And I've
made a couple of runs to visit family members also,
(08:42):
so I'm branching out more now than I was initially.
Initially I was nervous about it, and as I became
more comfortable, I started doing more things for myself.
Speaker 2 (08:52):
How important is that support outside of your caregiving? How
important is that support system for you?
Speaker 3 (08:58):
I think it's been critical and I wish I had
had enough sense to take advantage of it earlier. I
think it benefits both of us actually, because it gives
her an opportunity to see a different face and have
a discussion with somebody else one of my besides being
a fixer, I'm not a chip chatter, So it leaves
us with a lot of downtime from a communications standpoint,
(09:20):
and that's been helpful to Maddie as well, to have
somebody who she can talk to more so than you
can just sit down and talk to me during the day.
Speaker 1 (09:37):
So, you know, they say women are more prone to
depression as caregivers but men also experience that too, And
are you really down days? What kind of coping mechanisms
do you have to maintain your sense of self?
Speaker 3 (09:52):
The You know, one of the things I do every
day is I ask God to give me what I
need to handle whatever comes my way that day. And
there's no doubt in my mind I get that. So
when I get into that position, I try to go
back and remember that for me it's an inconvenience and
for her it's a problem. And the thing that I
can do the best is be there to make her
(10:14):
situation a little bit more bearable and a little bit better.
And when that works and I get a favorable response,
and the reward at that moment is greater than all
the frustrations I face, and it gives me what I
need to continue going forward.
Speaker 2 (10:27):
Wow, that's so beautifully said. You can tell y'all. Y'all
are so bonded through your sixty years of knowing each other.
You're so loyal and dedicated to her. Do you ever
feel like giving up?
Speaker 3 (10:41):
There have been a few times, but it's something that
I think if your foundation is love and faith, then
giving up is not an option. I was never one
to believe in giving up and never want to turn
my back on somebody in need, especially somebody in my family.
And that's never been a serious consideration. It's been more
of a a feeling of frustration, but never a serious consideration.
Speaker 2 (11:05):
And how have you managed it with your sons? Do
y'all talk about her condition or do y'all support each other?
Speaker 3 (11:12):
Oh? Absolutely, he knows everything that's going on. We text
back and forth and then he comes over to visit
every week, so he's seen the progression, not on a
daily basis, but on a weekly basis, and he's offered
whatever support he's been able to give. He still works
full time, so that's been sparse, but it hasn't been needed.
And when it has been needed, he's solid as a rock.
(11:34):
He'll be here.
Speaker 2 (11:36):
That's wonderful. So have you made any long range decisions
about her care or what's coming down the pike, or
do you feel like you want to keep her at
home as long as possible.
Speaker 3 (11:47):
I definitely want to stay home as long as possible.
Visited several places and gotten information from others so that
when the time comes I'll have the information I need
to make what I think is the best decision at
the time, But right now this is where it feels best.
Speaker 2 (12:04):
What is your favorite thing to do together?
Speaker 1 (12:07):
Now?
Speaker 3 (12:08):
We talk about old times and try to think about
some funny things where we can both laugh and enjoy those.
And we watch foolishness on TV that we talk about,
you know, just anything that can give us a little
levity and make us laugh. We laugh every day regardless
of the situations. Every day we find something we can
laugh about and we can talk together about.
Speaker 2 (12:30):
Does she recognize you most days.
Speaker 3 (12:32):
Every at some point every day, but not all day
every day? And it seems like the memory ships happened
faster now than they did before. Initially it was whatever
whether I was recognized or not recognized. It would last
for hours and then all of a sudden there would
be a change. Now it can be down to minutes,
(12:54):
flip back and forth. So in the first time, I
was devastated, I cried like a baby. And then as
it became more frequent and I learned more than I
understood more in that link you sent me to that
video about a trip back in time that was really
critical for me to view and understand.
Speaker 1 (13:15):
You know, So all that is my doctor Chris Johnson
in case anybody wants to look that up.
Speaker 2 (13:19):
But so you found a better way to cope when
she doesn't recognize you.
Speaker 3 (13:25):
What I've been able to do is maintain a calm demeanor.
So even when she doesn't recognize me, I think she
recognizes a familiar face that she's comfortable with, or early
on we had some pretty tense moments where she didn't
want me in the house, didn't know who I was,
and that hasn't happened over the last six or eight months.
So I think a comfort feeling with me, whether I'm
recognized or not recognized, and the fact that I'm a
(13:48):
safe person and I'm going to do whatever I can
to help is needed.
Speaker 2 (13:52):
I know Alzheimer's and dementia affects each person uniquely, but
what are What have you found works when Maddie gets
I'm anxious or agitated? What works for you?
Speaker 3 (14:03):
The only thing that works, and I don't know that
it works. The thing that seems to give the best
results is to ask as many questions as possible in
a calm manner and try and answer in a way
that's not threatening or not ugly or negative. And that
just changes from situation to situation. Most frequently it's the afternoon,
(14:27):
you know, the sundowner thing, and it's about going home
to a place that no longer exists. There's no definition
of where that is, but there's a strong desire to
get up and go, you know. So we get up
and walk around the house and look at things and
talk a little bit and hope it passes. Some days
it does, some days it doesn't. You know, those are difficult.
Speaker 2 (14:47):
I'm still how do you have that patience?
Speaker 3 (14:50):
Well, I told her that she asked me that question,
the very same question. I told her that when we
were born, we're given a certain amount of patients, and
I hadn't used any of mine up, so I still
have it all all left.
Speaker 2 (15:01):
That's a good answer.
Speaker 3 (15:03):
But in reality, it's a combination, you know. It's faith
in love, and I asked for what I've been, what
I need to do, what needs to be done, And
in the times when I get surprised with things I
didn't expect and feeling initial frustration, then that grace comes
to me. And most of the time I'm able to
(15:23):
accept it and behave appropriately. Sometimes I'm not too proud
of myself, but I'd like to be able to do
it right all the time. But I don't.
Speaker 2 (15:36):
What has your faith meant to you during this time
of caregiving.
Speaker 3 (15:42):
I don't know how you can make it without it.
You know. One of the things I have to I
laugh at myself sometimes because one of the things I
heard when I do my daily prayers, one of the
things I say is whatever you have in store for
me today, I would like to be part of. And
one of the things I learned a long time ago
is it when you pray, don't lie. And I'm not
sure to say that I'm not lying, but you know
(16:04):
that I was asking for whatever I need, uh, and
being open to receiving whatever comes to me at the
time to say or or way to behave that I
wouldn't necessarily do on my own. And I believe that
that I'm getting what I asked for on those times,
at those times.
Speaker 2 (16:22):
Are you ever fearful?
Speaker 3 (16:24):
Yes? Yeah?
Speaker 2 (16:27):
Does that cause anxiety?
Speaker 3 (16:29):
Well, because of the mobility problems, we've had a lot
of falls. One just a week ago Wednesday, uh, that
resulted in a black eye and a badly bruised wrist
and almost had to make another run to the emergency room.
You know, so the fall thing is always a fear,
and then uh, not knowing how the progression is going
(16:50):
to work and how I'll be able to react to
it and maintain that calm and that trust and all
of that is a I don't know if it's more
of a fear or concern, but it's a big unknown
and I don't have an answer for it, and I
just have to trust that I'll be given what I
need as the time progresses.
Speaker 2 (17:07):
What has this whole caregiving experience taught you?
Speaker 3 (17:11):
It's taught me. One of the things I get asked
about is how I feel about giving up all of
my freedom, And it taught me the difference between selfishness
and service, and a lot of the stuff that I
considered freedom in the past was really I was just
really being a slave for selfishness, and I found out
(17:32):
the true freedom is a choice to put what you
want to do aside and make the choice to help
somebody out who needs it. More. So, I don't feel
like I've lost my freedom. I feel like I'm exercising
it more and in a different way.
Speaker 2 (17:46):
Your sacrifices are what my sacrifices.
Speaker 3 (17:52):
And I don't know that that's the right word. If
it is my sacrifices is giving up the things that
I used to do that were that were fun to
do in order to take care of somebody that I
love and who needs the help, you know. So is
that a sacrifice. I don't know if it's a sacrifice,
but it's a change in behavior for someone else's benefit
(18:14):
instead of mind, you know. And that's when that's a
free choice. And I think that's true freedom being expressed.
Speaker 1 (18:20):
If you could give one piece of advice or one
pearl of wisdom to others who find themselves in the
same situation.
Speaker 2 (18:27):
As you, what would you tell caregivers?
Speaker 3 (18:30):
I would tell them to lean very very strongly on
their faith, and if they don't have faith, then find
some sort of spiritual comfort that they can relate to
that will give them the strength they need to go
through the situation, and mostly to be able to maintain
calm and patience and understanding. Those are the most critical
(18:53):
things that I've had to exercise that are not in
my nature. You know. I'll normally react instead of pause
and think of the proper response. And I've learned to
do a better job of pausing before I respond. So
whatever the people would need to be able to pause
before they respond inappropriately and maintain that calmness and compassion
(19:14):
and understanding would be the most critical thing. And I
got some of that from most of that from reading,
and I would recommend the Thirty six Hour Day. Naturally,
your book has some information that I've not seen anywhere else.
It was very helpful to me because my patient is
a spouse. I read a book called My Two Elanes
(19:35):
from the Governor of Wisconsin or somewhere Michigan, but anyway,
it was wonderful. And then another book called Meet Me
Where I Am, which was the latest one I read,
which I think is really critical for people to understand.
I've read a book a long time ago by Stephen Covey,
and it said between stimulus and response, there is a space,
and in that space is our choice to choose our response,
(19:58):
and in our response lies I happened. And I've tried
that to learn that to do that pause before I
react inappropriately.
Speaker 2 (20:08):
Okay, you hear that, all of you caregivers and mail
caregivers to pause, to pause. Well, I so appreciate bo
Bnview being my guest today and offering his personal perspectives
on the mail caregiving experience. We're closing now, but remember
the matto and the journey. The better, the more you know,
the better to go. If you have any questions or comments,
(20:28):
please reach out to me at the Memory Whisper at
gmail dot com or go to my website, The Memory
Whisper dot com. Thank you Bo for being here today,
and thank you most of all for being such a
loving and compassionate caregiver for Maddie.
Speaker 3 (20:43):
Thank you. I appreciate that affirmation and I need that
type of stuff and I was happy to be here.
Speaker 1 (20:58):
Well that's it for us today. Thank you for listening.
The Memory Whisperer is a production of iHeartRadio and the
Cenica Women podcast Network. It's produced by me Dana Tiredo
in honor of Peggy and all those affected by Alzheimer's disease.
I offer a special thanks to my audio editor, Blake Longlonee,
and to Michael Andrews, a person with dementia, who gave
(21:20):
me permission to use his beautiful flute music for this podcast.
For more information or to reach me directly, head on
over to my website, The Memory Whisperer dot com. And
for those struggling with a diagnosis, remember my motto, the
more you know, the better it'll go. Blessings,
It started with Peggy, someone with Alzheimer's who never knew
my name and who I companion at her nursing home
residence for twenty two years. Her influence in my life
and the values I received from growing up with grandparents
living in our home are the guiding forces and my
love and advocacy for the Alzheimer's population. I am a
(00:27):
newspaper columnist for The Advocate in Baton Rouge, Louisiana, and
the author of What My Grandchildren Taught Me About Alzheimer's Disease,
And now I'm launching a podcast. Hi, you're listening to
Dana Tito the Memory Whisper. Join me in these podcasts
as we engage in thoughtful conversations about Alzheimer's disease and
(00:49):
other dementias. Over eleven million Americans provide unpaid care for
people with Alzheimer's or other dementias. Twenty two alone, unpaid
caregivers provided an estimated eighteen billion hours of care, valued
at three hundred and thirty nine point five billion dollars.
(01:10):
More than six million Americans are living with Alzheimer's or
other related dementias, and by twenty fifty, this number is
projected to be thirteen million. Talking today about male caregivers,
they're a demographically diverse group. They will do whatever is
necessary for those in their care. But when we think
(01:30):
about a caregiver for someone with dementia, a picture of
a woman normally comes to mind.
Speaker 2 (01:35):
For most of us. After all, approximately two thirds of
caregivers are female. But what about the other third? What
do we know about men who find themselves in this
caregiving role today? I'm happy to welcome a male caregiver,
mister Bobian Venue, who lives in Baton Rouge, Louisiana. He's
seventy eight years old, a Navy veteran and a Louisiana
(01:58):
State University alum Go Tigers. Bo retired from Geo Heat
Exchangers and Field Service and as past president of the
bat and Reach Chapter of the Cajun French Music Association
and a past eucharistic minister and lector at Saint John
the Evangelist Church in Prairieville, Louisiana. Bou has been married
to Matti Buriette Bienvenue for fifty six years and has
(02:20):
been her caregiver for five years in counting, including the
last year completely full time. So I'm so happy to
have you here with me. Bo Welcome, thanks for joining me.
Speaker 3 (02:30):
Appreciate your interviewing me.
Speaker 2 (02:32):
Can you share your story, Bou with our listeners? When
did you first start to notice some deficits with Maddie.
Speaker 3 (02:40):
We started to notice something probably in twenty seventeen, and
it got progressively worse, to the point where in twenty
nineteen we were concerned enough to go see a neurologist,
and at that point he kind of blew it off
and didn't take it very seriously, so we just let
things progress point that they got really bad and got
(03:03):
a formal diagnosis in twenty to twenty. I believe it's
been one of the more difficult things that I've ever
faced in my life. You never know what's coming. I'm
the type of person who likes to be able to
take care of whatever shows up, and when you don't
know what's coming and don't know how to handle it
it I found it much more stressful earlier than I
(03:26):
do today. I do a better job today now that
I've learned some things than I did before, but it's
been a very stressful and at the same time a
very rewarding experience.
Speaker 2 (03:37):
Do you see there's a difference in the male caregiving
role in a female caregiving role.
Speaker 3 (03:43):
I don't know that there would be, because I think
it requires paying close attention to the needs of the person,
to the needy person in responding in an appropriate manner.
So I think from that perspective the role would be similar.
And outside of that, I don't know what I do
(04:04):
differently than what she would do if our roles were reversed.
Speaker 2 (04:08):
So it's typical for males kind of they want to
fix stuff. Was that your first inclination when Maddie was diagnosed?
You wanted to fix her disease or something like that?
Speaker 3 (04:18):
Absolutely, you know, I wanted to help or go through
a logical sequence of events when it came time to
make decisions and think about things clearly, and I didn't
understand why that wasn't happening and that wasn't possible. So
that was very frustrating for me. And I'm one of
the fixers, you know, I was born and raised and
(04:39):
not being able to do that has been a real
challenge for me.
Speaker 2 (04:44):
So what is your biggest challenge like right now with
her care?
Speaker 3 (04:49):
Well, we have more than just the one issue she
had chronic back pain, which limits her mobility severely. She
can have very much trouble walking, can't walk on her
own right now. So we have a combination of that
plus the dementia, and dealing with the two of them
together is probably a big challenge. I think either one
by themselves would almost be like going to Disneyland compared
(05:11):
to what we're doing right now.
Speaker 2 (05:14):
Well, tell us a little bit about Maddie. What is
she like?
Speaker 3 (05:18):
She is an absolutely wonderful person. When I met her
fifty six or probably sixty years ago, I was completely smitten.
She graduated from the original Lady of the Lake Nursing School,
and she was a registered nurse. Did hospital work, did
home health work, did hospice work, did patient I don't
(05:42):
know what you call it, patient assessment. And I think
that her whole life has been focused on care of
other people. She did a wonderful job with our two boys,
and did an incredible job putting up with all of
my garbage over all of the years. I didn't deserve
to still have her, but I'm sure glad I do.
Speaker 2 (06:00):
Do you consider I mean, did it hit you after
she was diagnosed that you were going to be a caregiver?
Speaker 3 (06:06):
There was never any doubt in my mind that I
would be her caregiver. Like I told her, we almost
ought to be happy about this because we signed up
for better or worse sickness and health, richer or poor,
and we've been through everything but richer, So that's got
to be right around the corner.
Speaker 2 (06:21):
Oh wow wow. So have you had difficulty asking for
help or enlisting help during her care.
Speaker 3 (06:31):
I'm not a big person. I'm not a big help asker.
That's one of my core character defects is not asking
for help. I feel like I ought to be able
to do everything for myself, so for the first few
years I just refused to do that. I had people
offering I never took them up on it, and we
got to the point where it was absolutely necessary. And
(06:53):
now we have a sitter in the house three days
a week for five hours a day so I can
do my doctor's appointments, get out and run the air
as I have to do, and then periodically go visit
with some friends.
Speaker 1 (07:04):
Have the resources been available to you to help you
through your journey.
Speaker 3 (07:08):
Absolutely. I got some resources through a Centim parish council
on aging. I've gotten some information from Alzheimer's Association in
Baton Rouge. I've read your book in the Thirty Six
Hour Day, plus two other books, all of which help
me immenseally and each one differently, and I would strongly
recommend to anyone else they get as educated as possible
(07:30):
about their specific situation.
Speaker 2 (07:33):
That's great. So many caregivers that's kind of the last
thing they do to get educated, but really it should
be the first thing they should do to get educated
so they can better manage the disease.
Speaker 3 (07:45):
Yeah. Just learning what's going on and finally coming to
an understanding of how that progresses and how it causes
the person to behave and act has helped me a
tremendous amount, with the being trying to be able to
remain calm and empathetic and compassion all at the same time,
(08:06):
which I had a difficulty with earlier.
Speaker 1 (08:09):
So when you have your paid assistance, your paid caregivers
at home, are you allowed I mean, are you giving
yourself the attention you need with self care? Are you
just running errands and doing the things.
Speaker 2 (08:20):
You need to do.
Speaker 3 (08:22):
I mostly run errands, but I got a couple old
friends that are also kind of disabled, and we used
to get together every two weeks, and now I use
that opportunity to get together with them and we have
a lunch together probably once a month now and I
hadn't been able to do anything like that. And I've
made a couple of runs to visit family members also,
(08:42):
so I'm branching out more now than I was initially.
Initially I was nervous about it, and as I became
more comfortable, I started doing more things for myself.
Speaker 2 (08:52):
How important is that support outside of your caregiving? How
important is that support system for you?
Speaker 3 (08:58):
I think it's been critical and I wish I had
had enough sense to take advantage of it earlier. I
think it benefits both of us actually, because it gives
her an opportunity to see a different face and have
a discussion with somebody else one of my besides being
a fixer, I'm not a chip chatter, So it leaves
us with a lot of downtime from a communications standpoint,
(09:20):
and that's been helpful to Maddie as well, to have
somebody who she can talk to more so than you
can just sit down and talk to me during the day.
Speaker 1 (09:37):
So, you know, they say women are more prone to
depression as caregivers but men also experience that too, And
are you really down days? What kind of coping mechanisms
do you have to maintain your sense of self?
Speaker 3 (09:52):
The You know, one of the things I do every
day is I ask God to give me what I
need to handle whatever comes my way that day. And
there's no doubt in my mind I get that. So
when I get into that position, I try to go
back and remember that for me it's an inconvenience and
for her it's a problem. And the thing that I
can do the best is be there to make her
(10:14):
situation a little bit more bearable and a little bit better.
And when that works and I get a favorable response,
and the reward at that moment is greater than all
the frustrations I face, and it gives me what I
need to continue going forward.
Speaker 2 (10:27):
Wow, that's so beautifully said. You can tell y'all. Y'all
are so bonded through your sixty years of knowing each other.
You're so loyal and dedicated to her. Do you ever
feel like giving up?
Speaker 3 (10:41):
There have been a few times, but it's something that
I think if your foundation is love and faith, then
giving up is not an option. I was never one
to believe in giving up and never want to turn
my back on somebody in need, especially somebody in my family.
And that's never been a serious consideration. It's been more
of a a feeling of frustration, but never a serious consideration.
Speaker 2 (11:05):
And how have you managed it with your sons? Do
y'all talk about her condition or do y'all support each other?
Speaker 3 (11:12):
Oh? Absolutely, he knows everything that's going on. We text
back and forth and then he comes over to visit
every week, so he's seen the progression, not on a
daily basis, but on a weekly basis, and he's offered
whatever support he's been able to give. He still works
full time, so that's been sparse, but it hasn't been needed.
And when it has been needed, he's solid as a rock.
(11:34):
He'll be here.
Speaker 2 (11:36):
That's wonderful. So have you made any long range decisions
about her care or what's coming down the pike, or
do you feel like you want to keep her at
home as long as possible.
Speaker 3 (11:47):
I definitely want to stay home as long as possible.
Visited several places and gotten information from others so that
when the time comes I'll have the information I need
to make what I think is the best decision at
the time, But right now this is where it feels best.
Speaker 2 (12:04):
What is your favorite thing to do together?
Speaker 1 (12:07):
Now?
Speaker 3 (12:08):
We talk about old times and try to think about
some funny things where we can both laugh and enjoy those.
And we watch foolishness on TV that we talk about,
you know, just anything that can give us a little
levity and make us laugh. We laugh every day regardless
of the situations. Every day we find something we can
laugh about and we can talk together about.
Speaker 2 (12:30):
Does she recognize you most days.
Speaker 3 (12:32):
Every at some point every day, but not all day
every day? And it seems like the memory ships happened
faster now than they did before. Initially it was whatever
whether I was recognized or not recognized. It would last
for hours and then all of a sudden there would
be a change. Now it can be down to minutes,
(12:54):
flip back and forth. So in the first time, I
was devastated, I cried like a baby. And then as
it became more frequent and I learned more than I
understood more in that link you sent me to that
video about a trip back in time that was really
critical for me to view and understand.
Speaker 1 (13:15):
You know, So all that is my doctor Chris Johnson
in case anybody wants to look that up.
Speaker 2 (13:19):
But so you found a better way to cope when
she doesn't recognize you.
Speaker 3 (13:25):
What I've been able to do is maintain a calm demeanor.
So even when she doesn't recognize me, I think she
recognizes a familiar face that she's comfortable with, or early
on we had some pretty tense moments where she didn't
want me in the house, didn't know who I was,
and that hasn't happened over the last six or eight months.
So I think a comfort feeling with me, whether I'm
recognized or not recognized, and the fact that I'm a
(13:48):
safe person and I'm going to do whatever I can
to help is needed.
Speaker 2 (13:52):
I know Alzheimer's and dementia affects each person uniquely, but
what are What have you found works when Maddie gets
I'm anxious or agitated? What works for you?
Speaker 3 (14:03):
The only thing that works, and I don't know that
it works. The thing that seems to give the best
results is to ask as many questions as possible in
a calm manner and try and answer in a way
that's not threatening or not ugly or negative. And that
just changes from situation to situation. Most frequently it's the afternoon,
(14:27):
you know, the sundowner thing, and it's about going home
to a place that no longer exists. There's no definition
of where that is, but there's a strong desire to
get up and go, you know. So we get up
and walk around the house and look at things and
talk a little bit and hope it passes. Some days
it does, some days it doesn't. You know, those are difficult.
Speaker 2 (14:47):
I'm still how do you have that patience?
Speaker 3 (14:50):
Well, I told her that she asked me that question,
the very same question. I told her that when we
were born, we're given a certain amount of patients, and
I hadn't used any of mine up, so I still
have it all all left.
Speaker 2 (15:01):
That's a good answer.
Speaker 3 (15:03):
But in reality, it's a combination, you know. It's faith
in love, and I asked for what I've been, what
I need to do, what needs to be done, And
in the times when I get surprised with things I
didn't expect and feeling initial frustration, then that grace comes
to me. And most of the time I'm able to
(15:23):
accept it and behave appropriately. Sometimes I'm not too proud
of myself, but I'd like to be able to do
it right all the time. But I don't.
Speaker 2 (15:36):
What has your faith meant to you during this time
of caregiving.
Speaker 3 (15:42):
I don't know how you can make it without it.
You know. One of the things I have to I
laugh at myself sometimes because one of the things I
heard when I do my daily prayers, one of the
things I say is whatever you have in store for
me today, I would like to be part of. And
one of the things I learned a long time ago
is it when you pray, don't lie. And I'm not
sure to say that I'm not lying, but you know
(16:04):
that I was asking for whatever I need, uh, and
being open to receiving whatever comes to me at the
time to say or or way to behave that I
wouldn't necessarily do on my own. And I believe that
that I'm getting what I asked for on those times,
at those times.
Speaker 2 (16:22):
Are you ever fearful?
Speaker 3 (16:24):
Yes? Yeah?
Speaker 2 (16:27):
Does that cause anxiety?
Speaker 3 (16:29):
Well, because of the mobility problems, we've had a lot
of falls. One just a week ago Wednesday, uh, that
resulted in a black eye and a badly bruised wrist
and almost had to make another run to the emergency room.
You know, so the fall thing is always a fear,
and then uh, not knowing how the progression is going
(16:50):
to work and how I'll be able to react to
it and maintain that calm and that trust and all
of that is a I don't know if it's more
of a fear or concern, but it's a big unknown
and I don't have an answer for it, and I
just have to trust that I'll be given what I
need as the time progresses.
Speaker 2 (17:07):
What has this whole caregiving experience taught you?
Speaker 3 (17:11):
It's taught me. One of the things I get asked
about is how I feel about giving up all of
my freedom, And it taught me the difference between selfishness
and service, and a lot of the stuff that I
considered freedom in the past was really I was just
really being a slave for selfishness, and I found out
(17:32):
the true freedom is a choice to put what you
want to do aside and make the choice to help
somebody out who needs it. More. So, I don't feel
like I've lost my freedom. I feel like I'm exercising
it more and in a different way.
Speaker 2 (17:46):
Your sacrifices are what my sacrifices.
Speaker 3 (17:52):
And I don't know that that's the right word. If
it is my sacrifices is giving up the things that
I used to do that were that were fun to
do in order to take care of somebody that I
love and who needs the help, you know. So is
that a sacrifice. I don't know if it's a sacrifice,
but it's a change in behavior for someone else's benefit
(18:14):
instead of mind, you know. And that's when that's a
free choice. And I think that's true freedom being expressed.
Speaker 1 (18:20):
If you could give one piece of advice or one
pearl of wisdom to others who find themselves in the
same situation.
Speaker 2 (18:27):
As you, what would you tell caregivers?
Speaker 3 (18:30):
I would tell them to lean very very strongly on
their faith, and if they don't have faith, then find
some sort of spiritual comfort that they can relate to
that will give them the strength they need to go
through the situation, and mostly to be able to maintain
calm and patience and understanding. Those are the most critical
(18:53):
things that I've had to exercise that are not in
my nature. You know. I'll normally react instead of pause
and think of the proper response. And I've learned to
do a better job of pausing before I respond. So
whatever the people would need to be able to pause
before they respond inappropriately and maintain that calmness and compassion
(19:14):
and understanding would be the most critical thing. And I
got some of that from most of that from reading,
and I would recommend the Thirty six Hour Day. Naturally,
your book has some information that I've not seen anywhere else.
It was very helpful to me because my patient is
a spouse. I read a book called My Two Elanes
(19:35):
from the Governor of Wisconsin or somewhere Michigan, but anyway,
it was wonderful. And then another book called Meet Me
Where I Am, which was the latest one I read,
which I think is really critical for people to understand.
I've read a book a long time ago by Stephen Covey,
and it said between stimulus and response, there is a space,
and in that space is our choice to choose our response,
(19:58):
and in our response lies I happened. And I've tried
that to learn that to do that pause before I
react inappropriately.
Speaker 2 (20:08):
Okay, you hear that, all of you caregivers and mail
caregivers to pause, to pause. Well, I so appreciate bo
Bnview being my guest today and offering his personal perspectives
on the mail caregiving experience. We're closing now, but remember
the matto and the journey. The better, the more you know,
the better to go. If you have any questions or comments,
(20:28):
please reach out to me at the Memory Whisper at
gmail dot com or go to my website, The Memory
Whisper dot com. Thank you Bo for being here today,
and thank you most of all for being such a
loving and compassionate caregiver for Maddie.
Speaker 3 (20:43):
Thank you. I appreciate that affirmation and I need that
type of stuff and I was happy to be here.
Speaker 1 (20:58):
Well that's it for us today. Thank you for listening.
The Memory Whisperer is a production of iHeartRadio and the
Cenica Women podcast Network. It's produced by me Dana Tiredo
in honor of Peggy and all those affected by Alzheimer's disease.
I offer a special thanks to my audio editor, Blake Longlonee,
and to Michael Andrews, a person with dementia, who gave
(21:20):
me permission to use his beautiful flute music for this podcast.
For more information or to reach me directly, head on
over to my website, The Memory Whisperer dot com. And
for those struggling with a diagnosis, remember my motto, the
more you know, the better it'll go. Blessings,
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