April 16, 2025 • 23 mins
In this episode, Steve and Virginia explore the emotional and practical differences between caring for a parent versus a spouse with dementia. Virginia emphasizes the role reversal and challenges of managing her mother’s daily needs and finances, while Steve opens up about the loss of companionship and adapting intimacy in his relationship with his wife, Patty. They discuss the importance of communication with family members, the struggle of accepting help, and the emotional weight of caregiving tasks. Their conversation highlights the complexities of long-term caregiving and the importance of maintaining connection, patience, and open dialogue throughout the journey.
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Steve (00:06):
From the University of California, Irvine. This is UCI
MIND's Spotlight On Care, thepodcast where we share stories,
experiences, tips, and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Hello everybody, and welcome totoday's podcast of Spotlight On
Care. Wanted to remind you tomake sure that you subscribe to
(00:30):
Spotlight On Care, and that'llbe the way that you find out
when we're releasing a newpodcast- you'll get an update.
And today, we're going to talk alittle bit about the differences
between our experiences, both ofus who are blessed to have cared
for a loved one, but there's adifference between caring for a
parent and caring for a spouse.
And the more that we startedtalking about it and thinking
(00:50):
about the conversations thatwe've gotten from all of you, we
realized that there were somereally unique things that maybe
we should highlight in the areaof tips, of things you can and
should do if you're in thoseparticular journeys, caring for
your parent or caring for yourspouse. So let's start off today
with Virginia. Alright let'stalk about category of
(01:14):
relationship dyanmics. How didyou see that operating for you
when you were caring for yourmom?
Virginia (01:24):
Well, you know, doing this podcast with you, Steve, it
has brought to the surface thefact that there are a lot of
differences between caring for aparent and caring for a spouse.
And I think the biggest issuefor me was the role reversal. My
mom was always my mom. I went toher for advice, and she gave it
(01:49):
to me gladly. We had a wonderfulrelationship. It rarely had its
downside. Then, with the onsetof dementia, I was having to do
a role reversal. I almost becamelike her parent, and then the
more she got into her disease,she became more like a child.
(02:13):
And it took me, I don't knowhow, many years, to really get a
grasp on the fact that I neededto act more like her parent for
safety and many reasons. Thedifferences between caring for a
parent and caring for a spouse,I think, are very remarkable,
and I often look back and thinkI could have taken better care
(02:36):
of a stranger than I took of mymom, especially in the
beginning, because I could get ahold of taking care of somebody
else, but this was my mom, sothe emotions really kind of
messed me up. I had to do thishuge mental shift. So not with a
spouse, with a parent, manytimes they do not have a spouse
(02:59):
at that point, and they needtheir child to help with the
caregiving at first. And whatcomes into play are the
activities of daily living,bills that need to be paid,
food, preparation and purchase,household chores, taking of
(03:20):
dailymedications. These are thethings that I had to get a grip
on with my mom, and you talkabout the sandwich generation. I
was still raising two kids.
After a while, it was almostlike another child to take care
of.
Steve (03:35):
Let me ask you a question, Virginia.
Virginia (03:37):
Sure.
Steve (03:38):
As you were going through that process, you had to adjust.
What did your mom do and whatdid she say, and how difficult
was it for you or for her toaccept this, and then what did
you do to deal with that?
Virginia (03:51):
Well, you know, the beginning was the tough part,
because she felt she was stillin control. She thought she
could drive just fine. Shethought she could handle her
finances, which became more andmore of a mess. But in the
beginning, I was telling her sheneeded help, and she didn't
(04:11):
understand why. And I hired acaregiver to come in two days a
week, in the mornings, and shewould call me and say, "Why is
this woman sitting next to me? Idon't need anybody here. Why is
she doing that?" And it's reallyhard to answer, because you feel
like saying you really need helpand she didn't feel like she
(04:34):
needed help. So that is aprocess. As we went along, she
Steve (04:37):
So, patience.
would admit certain things like,okay, I pointed out that she
wrote some inappropriate checksfor the wrong amounts, and it
was kind of a mess. Bills wereoverdue, and she finally, after
a while, admitted that sheneeded help, and I was breathing
a sigh of relief at that point,but in the beginning, she didn't
(05:00):
get it.
Virginia (05:03):
Patience.
Steve (05:03):
Yeah, patience.
Virginia (05:04):
Yeah.
Yeah. There's also theissue of grief over losing the
Steve (05:05):
Just to wait.
person that you thought you had-that she was an hour's drive
from me. I found myself at homeworried about her functioning
through the day. It is agrieving over losing the person
that you had. I remember the dayBob and I drove up for a visit,
(05:28):
and she had purchased a puppy,and we looked in the living
room, and there were piles, youcan imagine, all over, because
she didn't have the wherewithalto train a puppy to be potty
trained and go outside. And wesaid, "Oh, wow, this is just
horrible." And she goes, "What?"Yeah, really difficult.
Virginia (05:51):
Yeah.
Steve (05:51):
Maybe I can talk a little bit about how it was different
for caring for a spouse as itrelates to these relationships.
And we're talking about thiswhole, maybe a segue into
another question, but partners,especially as you age together,
the closer and closer you becometo your partner. And we've seen
from our experiences with peoplein their 80s, even in their 90s,
(06:13):
they're pretty much one-on-onetogether, and they rely on each
other, and so the loss of one ofthose, or for the person who's
the caregiver, is losing thisperson, and it's really, really
painful, because it's somebodyyou counted on,it's somebody
that you loved, it was somebodythat you depended upon, and all
of a sudden that partnership isgone. So it's a companionship
(06:37):
issue, and we'll talk a littlebit later. There's also the
intimacy issue. So let's talkabout another topic. What about
your partnership caring for aparent, and how did that work
for you in terms of your longterm partnership?
Virginia (06:51):
Well, as I said previously, my mom and I had a
wonderful relationship. Doesn'talways happen with mothers and
daughters, but it was wonderfulwith us, and she trusted me, and
we rarely ended up in arguments.
It was really, really a goodrelationship, and I wouldn't
call it partnership. It'sdifferent with a parent, a child
(07:11):
grows up and begins their ownlife, separate from their
parents, often including aspouse and their own children
and those it's just differentwhen it's your parent. It's not
really a partnership, as it iswith a spouse. I always wanted
her to have parental authority,and I don't think the term
(07:35):
partnership really applied withus.
Steve (07:39):
Did you get in any arguments?
Virginia (07:42):
Well, the one argument, I still feel bad when
I remember this, she had to goto the hospital with
diverticulitis, and she washooked up to, oh, so many tubes
and monitors and things all overher body, and she kept pulling
them out. And I had had it. Ihad no patience left. And I,
(08:04):
this is terrible, but I pinnedher arms down with my hands onto
the pillow. I just pinned themdown, and I said, "Stop, stop
this," and she looked up at melike she was shocked, and then
she said, "I'm sorry." Nearlykilled me.
Steve (08:20):
Well, I think that's part of the whole process. You know,
as you evolve as this caregiver,you know you're in charge, and
she or he is not, but that'sparticularly difficult if you're
the child previously.
Virginia (08:32):
Oh, it was horrible.
Steve (08:33):
So in terms of a long term partnership, for a spouse
relationship, you had all theseshared activities that occurred
in your life, whether it wasgoing on walks together, or
whether it was taking tripstogether, and all of these
things were a part of your life,especially as you age, you know,
you just feel this incrediblebond. And you don't really have
(08:53):
work, and you don't have as manyfriends as you used to have, as
I said earlier, you're a littlebit codependent on each other.
And so one of the things as thiscontinues, is you need to
reinforce, find places toreinforce this connection. Talk
about shared activities. I wastalking to a gentleman who was
going through this, and I said,"You know, why not talk about
(09:15):
when you dated? Remember thatthey're going to remember things
you may not remember that areolder memories." and so lo and
behold, he said, "Yeah, we do alittle bit of that. I can do
more of it." And it's like,okay, remember talking about
when your kids were young, thegrandkids now, when they were
young, or when, you know, youhad your kids and they were
young. And it's just like thisopportunity to reinforce those
(09:37):
memories that are older memoriesand stay connected to them.
That's one thing you can do. Theother thing is kind of a little
what Virginia was talking about,about activities, business
activities. How can you go overfinances, even if it's just,
"Hey, here's all the things weowe, and here's what I was
thinking we ought to pay. Andwhat do you think?" So all of a
(09:58):
sudden there's a participation,it's a little bit of a
collaboration. Ultimately,you're going to sign the checks,
but you're allowing that personto participate in the process,
so they still feel valued interms of what's going on. So I
think those are ways that I atleast worked for Patty and I, we
talked a lot about things thatwere mattered to us in our
business life and in ourpersonal life with our children,
(10:19):
so it kept our relationshipgoing.
Virginia (10:22):
Yes, you had a business that you ran, and she
was what- the financial?
Steve (10:28):
She was the controller.
Virginia (10:29):
Controller?
Steve (10:30):
Yeah, and I had to fire her. Talk about a series of
guilt that I felt, but the workwas suffering, and I really
wasn't working directly with herat the time someone else was and
I didn't see it, and theyeventually had to come to me and
said, "This just is gettingreally, really bad." So that
weekend, I said, "Hey, honey,you're not going to be able to
go back to work."
Virginia (10:51):
You had a partnership during the day, and then you
would go home, and yourpartnership continued.
Steve (10:58):
So I did talk a little bit about our professional life,
I would talk about what wasgoing on, especially early in
the process, because she wasinterested in hearing about how
things were going. She realizedshe couldn't be there
day-to-day, but it somehow kepther involved. A little bit about
this finding ways to connect.
Another way we connected wassome of the business things that
were going on in our life.
Virginia (11:17):
Sure.
Steve (11:18):
So let's talk a little bit about decision making, and I
guess we're talking over a lotof this at the same time, but
you had siblings, and somepeople have had problems with
siblings, whether they'restep-siblings or whether they're
real siblings. And can you talka little bit about how that
worked for you, and how did itwork for your mom?
Virginia (11:39):
I was very lucky. I have two younger brothers who
lived farther from where mom'shouse was, and of course, when
she ended up in assisted living,I was, what, a mile and a half,
and they still had a better partof 45 minutes to an hour to get
to that place. But I was verylucky, because they knew I was
(12:01):
the leader of this little team,and whatever I needed them to
do, they did, without question.
Even down to money, which wasthat can be such an issue with
people uncooperative. Somesiblings resent the person who
thinks they're in the lead, thenthat leader person resents the
fact that they're not involvedenough, and maybe they're not
(12:23):
local enough to help physically,but how about some things
financially? And then it doesn'thappen, and then it's a big
mess. I happen to have been verylucky. The three of us have
always been very close.
Steve (12:40):
But you also told me, as we were talking about this, that
you were really good at keepingthem informed, because you were
there on a regular basis andthey were there much less
frequently. How did that work?
Virginia (12:49):
Yeah, it worked out very well, especially I remember
the family meeting we called toconvince mom that she shouldn't
drive. And my brother, that's abig one, and my brother took the
Steve (13:02):
Lots of Bobs in your life.
lead on that. But our main pointwas, "Mom, if you hurt someone
or kill someone, there goes allthe money that dad had saved for
you in case you needed thatmoney after if he went first,"
which he did. Then she kind ofsaid, "Oh, you're right." And
(13:22):
then, of course, the next day,she was asking for her car keys,
but Bob took the lead. I'mmarried to a Bob, and my brother
is Bob. My dad was Bob.
Virginia (13:35):
Yeah, there were lots of Bobs.
My brother, Bob took the lead onthat family meeting, and it went
really well. We were all alittle nervous. That's a big
topic, taking away the car keys.
Steve (13:46):
Yeah, decision making for me as caring for a spouse. I
think that I talked a little bitabout that already, about
involving Patty in thoseconversations, but as it related
to dealing with my children, whowere not all around. My daughter
lived on the East Coast. My sonlived in Ohio. I guess that's on
the East Coast, at least theythink they are. My eldest son
(14:08):
was here in California. Butespecially for my daughter, it
was really a challenge, becauseshe and her mom were so close.
But she couldn't be here. Shewas working full time, even more
than full time, and so samething for my second son. A
little bit blessed for my eldestson, but I kind of got to a
point where I used electronics.
I mean, I literally, if we had ameeting with a doctor that they
(14:30):
couldn't attend, and it wasimportant to hear what he had to
say, or if there was some changethat was going on with her, I
would send an email. Some ofthem were weekly, and some of
them were every two weeks, butfrequently I would just update
them on what was going on, andsometimes it would be a call to
ask questions. So the dialoguewas pretty frequent. That's
important when you have membersthat aren't nearby. But also,
(14:54):
even I remember a guy who had,it was kind of a blended
marriage, one of the guys in oursupport group. So he had
daughters who were hisdaughters, and he had daughters
that were her daughters. And so,lo and behold, he had this
difference of opinion a lotbetween them. And he worked
really, really hard at theprocess of communication. I
(15:18):
think you can't write it off,because if you write it off and
you say, "Well, that person justdoesn't understand, I'm not
going to talk to him," it'sgoing to come back to haunt you
at some point in time. So Ithink the tip here, on either
side, really, is communication.
Virginia (15:32):
Did your kids ever disagree on something, you made
a decision, and then did theyever disagree with each other or
you?
Steve (15:40):
Not that I heard of, and the hardest conversation was
when I was making a decision toplace Patty in the community.
And we were all on a phonetogether, you know, conference
call. My son, who lived nearbyMark, says, "Yeah, I've been
around mom, and she just is ahandful. I mean, I took care of
her for two or three days, and Idon't know how you do that. So
(16:02):
dad needs more help." I stillowned a company. I still was
working full time, so I neededsome sort of help, but making a
decision to place somebody,someone that you love, and I
guess it's a deeper love, maybeit's hard to understand for a
spouse.
Virginia (16:17):
A different love.
Steve (16:18):
A different love, that's a great way to say it. And I
think that became really, reallyjust a huge decision, because it
not only was what was best forher, but it was an admission
that I couldn't handle it, andthat was really hard to accept.
And to this day, I wonderwhether or not I made the right
decision. I know I did, but inthe long term, you always
question it. Well, let's talkabout the question. When we
(16:42):
spoke together, we talked aboutthe whole issue of physical
andsexual intimacy as being ahuge difference between caring
for a parent and caring for aspouse. So why don't you talk
about the issues that you dealtwith with your mom?
Virginia (16:55):
Well, of course, the sexual intimacy was not an
issue, daughter, mother, butI'll tell you what was, it was
the physical issues. The thingsyou don't think about until
you're faced with thedifficulty, changing clothes;
did I want to help mom take herclothes off and then put new
(17:17):
clothes on? No, I didn't.
Bathing is an issue. I feltreally off when I knew that mom
needed a shower. The clothes hadto come off. You got to get her
into the shower. She did that tome. I wasn't thinking it was
something I should do, andfortunately, when she was in
assisted living, I did not needto do those things. One day, I
(17:40):
walked into her room, and therewas my caregiver that I had
hired, even separately to keepcare of her because, well, she
got up in the middle of thenight looking for my dad and
broke her arm. So I thought,"Okay, I need somebody sitting
in her room with her all nightlong to make sure that doesn't
happen again." That helper wasthere and a male caregiver was
(18:00):
changing her depends while shewas lying on the bed. I looked
into her eyes when I walked inand looking back, I should have
said, "Can we get a womancaregiver in here to do that?"
Because I could tell that fromher face, it didn't feel right
to her and I should have saidsomething. I also had caregivers
(18:21):
ask me, "Well, you can changeyour mom's depends, can't you?"
And my reaction was, it's not myplace. I don't want to. I will
help her sit on a toilet, butthat's kind of what they were
there to do. Thank God we couldafford- my dad had purchased
(18:41):
long term care insurance, andthat helped out tremendously
with the cost of her living andassisted living. But I didn't
feel that those things weresomething that I needed to do or
should do. It felt wrong.
Steve (18:57):
Yeah, I'll just segue off of your comment. I think that to
some degree that part's a littleeasier. I guess there's a
certain intimacy that you havewith a spouse that you don't
have as a child with yourparent. And you know, whether
it's you've seen each othernaked, or you've been in the
shower together, or whatever itis, I mean, certainly, handling
(19:20):
bodily functions is is not easy,but I went through that, and it
was okay because I gotaccustomed to it. I'd have to
say that the changing thediapers was the hardest thing to
do. I ended up having to do thatwith my mother for a brief
period of time, and I relate towhat you were saying. But I
think, to some degree, on thosekind of bodily issues, it was
(19:43):
easy. I think the part that'snot easy is this change in your
relationshipn from an intimatestandpoint- it's not there. It
sometimes happens, and youreally have to turn and let the
lead happen from your spouse.
That's what happened in ourrelationship. I mean, sex was
pretty regular. And Patty was inher early 60s, so it wasn't like
we didn't have sex. We did, butshe didn't want to have anything
(20:07):
to do with me. I mean, yes,hugging was good, and so I
actually changed the way we madelove together, and it became
much more of rather than kind ofa dual role, or, quote, unquote,
guys are in control. It became,she was in control, and there
was a lot more touching, andthere was a lot more hugging,
and all of a sudden it became avery special time for us. Didn't
(20:31):
happen frequently, but when itdid, I felt so good, and it was
just like, amazing. So I thinkyou have to change the way you
make love. I know this is maybehard to hear, but again, I think
it was a part of making thatrelationship continue and
finding a new way to connect.
Virginia (20:51):
I think it's so important that you just said
what you said, because everyoneout there thinks about it, but
no one really talks about it.
Steve (21:00):
Yeah, I remember in our men's group, if any guys
listening to this, I mean, amen's group, they're all like,
afraid to talk. And eventually,what happened is a few of these
kind of stories came out, and itwas amazing to hear guys kind of
take a deep breath and thenshare, and tears would flow, and
some would say, "Well, I don'tknow what to do. You know, we
(21:21):
used to have sex regularly, andnow we don't have it at all. And
what do I do about it?" And itrequired a change in behavior.
And I offered that story, and Ithink that it was like, how do I
say this? Women are differentthan men when it comes to sex
and finding a way for them toreally, really thoroughly enjoy
it, and you're really the personmaking it happen, not them. I
(21:44):
took great joy in that as I gotaccustomed to it.
Virginia (21:47):
Nice. Yeah.
Steve (21:48):
Well, I hope this was interesting for all of you. We,
Virginia (21:49):
Nope, I think we covered it.
I think, believe that this iswhat makes our Spotlight on Care
podcast sing is, is that we comeat this from different points of
view, and we thought we'd justshare some of our experiences
and some of those that we'veheard about. So don't forget to
subscribe, because this will bean opportunity for you to get
informed about when the nextpodcast is coming out, and when
(22:11):
you subscribe, we might even beout there asking if there are
topics that you'd like us totalk about and find someone to
interview. So thanks so much forlistening and anything you want
to add Virginia?
Steve (22:25):
Goodbye for now.
Spotlight on Care is produced bythe University of California
Irvine, Institute on MemoryImpairments and Neurological
Disorders, UCI MIND. Interviewsfocus on personal caregiving
journeys and may not representthe views of UCI MIND.
Individuals concerned aboutcognitive disorders prevention
or treatment should seek expertdiagnosis and care. Please
(22:49):
subscribe to the Spotlight onCare Podcast wherever you
listen. For more information,visit mind.uci.edu.
From the University of California, Irvine. This is UCI
MIND's Spotlight On Care, thepodcast where we share stories,
experiences, tips, and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Hello everybody, and welcome totoday's podcast of Spotlight On
Care. Wanted to remind you tomake sure that you subscribe to
(00:30):
Spotlight On Care, and that'llbe the way that you find out
when we're releasing a newpodcast- you'll get an update.
And today, we're going to talk alittle bit about the differences
between our experiences, both ofus who are blessed to have cared
for a loved one, but there's adifference between caring for a
parent and caring for a spouse.
And the more that we startedtalking about it and thinking
(00:50):
about the conversations thatwe've gotten from all of you, we
realized that there were somereally unique things that maybe
we should highlight in the areaof tips, of things you can and
should do if you're in thoseparticular journeys, caring for
your parent or caring for yourspouse. So let's start off today
with Virginia. Alright let'stalk about category of
(01:14):
relationship dyanmics. How didyou see that operating for you
when you were caring for yourmom?
Virginia (01:24):
Well, you know, doing this podcast with you, Steve, it
has brought to the surface thefact that there are a lot of
differences between caring for aparent and caring for a spouse.
And I think the biggest issuefor me was the role reversal. My
mom was always my mom. I went toher for advice, and she gave it
(01:49):
to me gladly. We had a wonderfulrelationship. It rarely had its
downside. Then, with the onsetof dementia, I was having to do
a role reversal. I almost becamelike her parent, and then the
more she got into her disease,she became more like a child.
(02:13):
And it took me, I don't knowhow, many years, to really get a
grasp on the fact that I neededto act more like her parent for
safety and many reasons. Thedifferences between caring for a
parent and caring for a spouse,I think, are very remarkable,
and I often look back and thinkI could have taken better care
(02:36):
of a stranger than I took of mymom, especially in the
beginning, because I could get ahold of taking care of somebody
else, but this was my mom, sothe emotions really kind of
messed me up. I had to do thishuge mental shift. So not with a
spouse, with a parent, manytimes they do not have a spouse
(02:59):
at that point, and they needtheir child to help with the
caregiving at first. And whatcomes into play are the
activities of daily living,bills that need to be paid,
food, preparation and purchase,household chores, taking of
(03:20):
dailymedications. These are thethings that I had to get a grip
on with my mom, and you talkabout the sandwich generation. I
was still raising two kids.
After a while, it was almostlike another child to take care
of.
Steve (03:35):
Let me ask you a question, Virginia.
Virginia (03:37):
Sure.
Steve (03:38):
As you were going through that process, you had to adjust.
What did your mom do and whatdid she say, and how difficult
was it for you or for her toaccept this, and then what did
you do to deal with that?
Virginia (03:51):
Well, you know, the beginning was the tough part,
because she felt she was stillin control. She thought she
could drive just fine. Shethought she could handle her
finances, which became more andmore of a mess. But in the
beginning, I was telling her sheneeded help, and she didn't
(04:11):
understand why. And I hired acaregiver to come in two days a
week, in the mornings, and shewould call me and say, "Why is
this woman sitting next to me? Idon't need anybody here. Why is
she doing that?" And it's reallyhard to answer, because you feel
like saying you really need helpand she didn't feel like she
(04:34):
needed help. So that is aprocess. As we went along, she
Steve (04:37):
So, patience.
would admit certain things like,okay, I pointed out that she
wrote some inappropriate checksfor the wrong amounts, and it
was kind of a mess. Bills wereoverdue, and she finally, after
a while, admitted that sheneeded help, and I was breathing
a sigh of relief at that point,but in the beginning, she didn't
(05:00):
get it.
Virginia (05:03):
Patience.
Steve (05:03):
Yeah, patience.
Virginia (05:04):
Yeah.
Yeah. There's also theissue of grief over losing the
Steve (05:05):
Just to wait.
person that you thought you had-that she was an hour's drive
from me. I found myself at homeworried about her functioning
through the day. It is agrieving over losing the person
that you had. I remember the dayBob and I drove up for a visit,
(05:28):
and she had purchased a puppy,and we looked in the living
room, and there were piles, youcan imagine, all over, because
she didn't have the wherewithalto train a puppy to be potty
trained and go outside. And wesaid, "Oh, wow, this is just
horrible." And she goes, "What?"Yeah, really difficult.
Virginia (05:51):
Yeah.
Steve (05:51):
Maybe I can talk a little bit about how it was different
for caring for a spouse as itrelates to these relationships.
And we're talking about thiswhole, maybe a segue into
another question, but partners,especially as you age together,
the closer and closer you becometo your partner. And we've seen
from our experiences with peoplein their 80s, even in their 90s,
(06:13):
they're pretty much one-on-onetogether, and they rely on each
other, and so the loss of one ofthose, or for the person who's
the caregiver, is losing thisperson, and it's really, really
painful, because it's somebodyyou counted on,it's somebody
that you loved, it was somebodythat you depended upon, and all
of a sudden that partnership isgone. So it's a companionship
(06:37):
issue, and we'll talk a littlebit later. There's also the
intimacy issue. So let's talkabout another topic. What about
your partnership caring for aparent, and how did that work
for you in terms of your longterm partnership?
Virginia (06:51):
Well, as I said previously, my mom and I had a
wonderful relationship. Doesn'talways happen with mothers and
daughters, but it was wonderfulwith us, and she trusted me, and
we rarely ended up in arguments.
It was really, really a goodrelationship, and I wouldn't
call it partnership. It'sdifferent with a parent, a child
(07:11):
grows up and begins their ownlife, separate from their
parents, often including aspouse and their own children
and those it's just differentwhen it's your parent. It's not
really a partnership, as it iswith a spouse. I always wanted
her to have parental authority,and I don't think the term
(07:35):
partnership really applied withus.
Steve (07:39):
Did you get in any arguments?
Virginia (07:42):
Well, the one argument, I still feel bad when
I remember this, she had to goto the hospital with
diverticulitis, and she washooked up to, oh, so many tubes
and monitors and things all overher body, and she kept pulling
them out. And I had had it. Ihad no patience left. And I,
(08:04):
this is terrible, but I pinnedher arms down with my hands onto
the pillow. I just pinned themdown, and I said, "Stop, stop
this," and she looked up at melike she was shocked, and then
she said, "I'm sorry." Nearlykilled me.
Steve (08:20):
Well, I think that's part of the whole process. You know,
as you evolve as this caregiver,you know you're in charge, and
she or he is not, but that'sparticularly difficult if you're
the child previously.
Virginia (08:32):
Oh, it was horrible.
Steve (08:33):
So in terms of a long term partnership, for a spouse
relationship, you had all theseshared activities that occurred
in your life, whether it wasgoing on walks together, or
whether it was taking tripstogether, and all of these
things were a part of your life,especially as you age, you know,
you just feel this incrediblebond. And you don't really have
(08:53):
work, and you don't have as manyfriends as you used to have, as
I said earlier, you're a littlebit codependent on each other.
And so one of the things as thiscontinues, is you need to
reinforce, find places toreinforce this connection. Talk
about shared activities. I wastalking to a gentleman who was
going through this, and I said,"You know, why not talk about
(09:15):
when you dated? Remember thatthey're going to remember things
you may not remember that areolder memories." and so lo and
behold, he said, "Yeah, we do alittle bit of that. I can do
more of it." And it's like,okay, remember talking about
when your kids were young, thegrandkids now, when they were
young, or when, you know, youhad your kids and they were
young. And it's just like thisopportunity to reinforce those
(09:37):
memories that are older memoriesand stay connected to them.
That's one thing you can do. Theother thing is kind of a little
what Virginia was talking about,about activities, business
activities. How can you go overfinances, even if it's just,
"Hey, here's all the things weowe, and here's what I was
thinking we ought to pay. Andwhat do you think?" So all of a
(09:58):
sudden there's a participation,it's a little bit of a
collaboration. Ultimately,you're going to sign the checks,
but you're allowing that personto participate in the process,
so they still feel valued interms of what's going on. So I
think those are ways that I atleast worked for Patty and I, we
talked a lot about things thatwere mattered to us in our
business life and in ourpersonal life with our children,
(10:19):
so it kept our relationshipgoing.
Virginia (10:22):
Yes, you had a business that you ran, and she
was what- the financial?
Steve (10:28):
She was the controller.
Virginia (10:29):
Controller?
Steve (10:30):
Yeah, and I had to fire her. Talk about a series of
guilt that I felt, but the workwas suffering, and I really
wasn't working directly with herat the time someone else was and
I didn't see it, and theyeventually had to come to me and
said, "This just is gettingreally, really bad." So that
weekend, I said, "Hey, honey,you're not going to be able to
go back to work."
Virginia (10:51):
You had a partnership during the day, and then you
would go home, and yourpartnership continued.
Steve (10:58):
So I did talk a little bit about our professional life,
I would talk about what wasgoing on, especially early in
the process, because she wasinterested in hearing about how
things were going. She realizedshe couldn't be there
day-to-day, but it somehow kepther involved. A little bit about
this finding ways to connect.
Another way we connected wassome of the business things that
were going on in our life.
Virginia (11:17):
Sure.
Steve (11:18):
So let's talk a little bit about decision making, and I
guess we're talking over a lotof this at the same time, but
you had siblings, and somepeople have had problems with
siblings, whether they'restep-siblings or whether they're
real siblings. And can you talka little bit about how that
worked for you, and how did itwork for your mom?
Virginia (11:39):
I was very lucky. I have two younger brothers who
lived farther from where mom'shouse was, and of course, when
she ended up in assisted living,I was, what, a mile and a half,
and they still had a better partof 45 minutes to an hour to get
to that place. But I was verylucky, because they knew I was
(12:01):
the leader of this little team,and whatever I needed them to
do, they did, without question.
Even down to money, which wasthat can be such an issue with
people uncooperative. Somesiblings resent the person who
thinks they're in the lead, thenthat leader person resents the
fact that they're not involvedenough, and maybe they're not
(12:23):
local enough to help physically,but how about some things
financially? And then it doesn'thappen, and then it's a big
mess. I happen to have been verylucky. The three of us have
always been very close.
Steve (12:40):
But you also told me, as we were talking about this, that
you were really good at keepingthem informed, because you were
there on a regular basis andthey were there much less
frequently. How did that work?
Virginia (12:49):
Yeah, it worked out very well, especially I remember
the family meeting we called toconvince mom that she shouldn't
drive. And my brother, that's abig one, and my brother took the
Steve (13:02):
Lots of Bobs in your life.
lead on that. But our main pointwas, "Mom, if you hurt someone
or kill someone, there goes allthe money that dad had saved for
you in case you needed thatmoney after if he went first,"
which he did. Then she kind ofsaid, "Oh, you're right." And
(13:22):
then, of course, the next day,she was asking for her car keys,
but Bob took the lead. I'mmarried to a Bob, and my brother
is Bob. My dad was Bob.
Virginia (13:35):
Yeah, there were lots of Bobs.
My brother, Bob took the lead onthat family meeting, and it went
really well. We were all alittle nervous. That's a big
topic, taking away the car keys.
Steve (13:46):
Yeah, decision making for me as caring for a spouse. I
think that I talked a little bitabout that already, about
involving Patty in thoseconversations, but as it related
to dealing with my children, whowere not all around. My daughter
lived on the East Coast. My sonlived in Ohio. I guess that's on
the East Coast, at least theythink they are. My eldest son
(14:08):
was here in California. Butespecially for my daughter, it
was really a challenge, becauseshe and her mom were so close.
But she couldn't be here. Shewas working full time, even more
than full time, and so samething for my second son. A
little bit blessed for my eldestson, but I kind of got to a
point where I used electronics.
I mean, I literally, if we had ameeting with a doctor that they
(14:30):
couldn't attend, and it wasimportant to hear what he had to
say, or if there was some changethat was going on with her, I
would send an email. Some ofthem were weekly, and some of
them were every two weeks, butfrequently I would just update
them on what was going on, andsometimes it would be a call to
ask questions. So the dialoguewas pretty frequent. That's
important when you have membersthat aren't nearby. But also,
(14:54):
even I remember a guy who had,it was kind of a blended
marriage, one of the guys in oursupport group. So he had
daughters who were hisdaughters, and he had daughters
that were her daughters. And so,lo and behold, he had this
difference of opinion a lotbetween them. And he worked
really, really hard at theprocess of communication. I
(15:18):
think you can't write it off,because if you write it off and
you say, "Well, that person justdoesn't understand, I'm not
going to talk to him," it'sgoing to come back to haunt you
at some point in time. So Ithink the tip here, on either
side, really, is communication.
Virginia (15:32):
Did your kids ever disagree on something, you made
a decision, and then did theyever disagree with each other or
you?
Steve (15:40):
Not that I heard of, and the hardest conversation was
when I was making a decision toplace Patty in the community.
And we were all on a phonetogether, you know, conference
call. My son, who lived nearbyMark, says, "Yeah, I've been
around mom, and she just is ahandful. I mean, I took care of
her for two or three days, and Idon't know how you do that. So
(16:02):
dad needs more help." I stillowned a company. I still was
working full time, so I neededsome sort of help, but making a
decision to place somebody,someone that you love, and I
guess it's a deeper love, maybeit's hard to understand for a
spouse.
Virginia (16:17):
A different love.
Steve (16:18):
A different love, that's a great way to say it. And I
think that became really, reallyjust a huge decision, because it
not only was what was best forher, but it was an admission
that I couldn't handle it, andthat was really hard to accept.
And to this day, I wonderwhether or not I made the right
decision. I know I did, but inthe long term, you always
question it. Well, let's talkabout the question. When we
(16:42):
spoke together, we talked aboutthe whole issue of physical
andsexual intimacy as being ahuge difference between caring
for a parent and caring for aspouse. So why don't you talk
about the issues that you dealtwith with your mom?
Virginia (16:55):
Well, of course, the sexual intimacy was not an
issue, daughter, mother, butI'll tell you what was, it was
the physical issues. The thingsyou don't think about until
you're faced with thedifficulty, changing clothes;
did I want to help mom take herclothes off and then put new
(17:17):
clothes on? No, I didn't.
Bathing is an issue. I feltreally off when I knew that mom
needed a shower. The clothes hadto come off. You got to get her
into the shower. She did that tome. I wasn't thinking it was
something I should do, andfortunately, when she was in
assisted living, I did not needto do those things. One day, I
(17:40):
walked into her room, and therewas my caregiver that I had
hired, even separately to keepcare of her because, well, she
got up in the middle of thenight looking for my dad and
broke her arm. So I thought,"Okay, I need somebody sitting
in her room with her all nightlong to make sure that doesn't
happen again." That helper wasthere and a male caregiver was
(18:00):
changing her depends while shewas lying on the bed. I looked
into her eyes when I walked inand looking back, I should have
said, "Can we get a womancaregiver in here to do that?"
Because I could tell that fromher face, it didn't feel right
to her and I should have saidsomething. I also had caregivers
(18:21):
ask me, "Well, you can changeyour mom's depends, can't you?"
And my reaction was, it's not myplace. I don't want to. I will
help her sit on a toilet, butthat's kind of what they were
there to do. Thank God we couldafford- my dad had purchased
(18:41):
long term care insurance, andthat helped out tremendously
with the cost of her living andassisted living. But I didn't
feel that those things weresomething that I needed to do or
should do. It felt wrong.
Steve (18:57):
Yeah, I'll just segue off of your comment. I think that to
some degree that part's a littleeasier. I guess there's a
certain intimacy that you havewith a spouse that you don't
have as a child with yourparent. And you know, whether
it's you've seen each othernaked, or you've been in the
shower together, or whatever itis, I mean, certainly, handling
(19:20):
bodily functions is is not easy,but I went through that, and it
was okay because I gotaccustomed to it. I'd have to
say that the changing thediapers was the hardest thing to
do. I ended up having to do thatwith my mother for a brief
period of time, and I relate towhat you were saying. But I
think, to some degree, on thosekind of bodily issues, it was
(19:43):
easy. I think the part that'snot easy is this change in your
relationshipn from an intimatestandpoint- it's not there. It
sometimes happens, and youreally have to turn and let the
lead happen from your spouse.
That's what happened in ourrelationship. I mean, sex was
pretty regular. And Patty was inher early 60s, so it wasn't like
we didn't have sex. We did, butshe didn't want to have anything
(20:07):
to do with me. I mean, yes,hugging was good, and so I
actually changed the way we madelove together, and it became
much more of rather than kind ofa dual role, or, quote, unquote,
guys are in control. It became,she was in control, and there
was a lot more touching, andthere was a lot more hugging,
and all of a sudden it became avery special time for us. Didn't
(20:31):
happen frequently, but when itdid, I felt so good, and it was
just like, amazing. So I thinkyou have to change the way you
make love. I know this is maybehard to hear, but again, I think
it was a part of making thatrelationship continue and
finding a new way to connect.
Virginia (20:51):
I think it's so important that you just said
what you said, because everyoneout there thinks about it, but
no one really talks about it.
Steve (21:00):
Yeah, I remember in our men's group, if any guys
listening to this, I mean, amen's group, they're all like,
afraid to talk. And eventually,what happened is a few of these
kind of stories came out, and itwas amazing to hear guys kind of
take a deep breath and thenshare, and tears would flow, and
some would say, "Well, I don'tknow what to do. You know, we
(21:21):
used to have sex regularly, andnow we don't have it at all. And
what do I do about it?" And itrequired a change in behavior.
And I offered that story, and Ithink that it was like, how do I
say this? Women are differentthan men when it comes to sex
and finding a way for them toreally, really thoroughly enjoy
it, and you're really the personmaking it happen, not them. I
(21:44):
took great joy in that as I gotaccustomed to it.
Virginia (21:47):
Nice. Yeah.
Steve (21:48):
Well, I hope this was interesting for all of you. We,
Virginia (21:49):
Nope, I think we covered it.
I think, believe that this iswhat makes our Spotlight on Care
podcast sing is, is that we comeat this from different points of
view, and we thought we'd justshare some of our experiences
and some of those that we'veheard about. So don't forget to
subscribe, because this will bean opportunity for you to get
informed about when the nextpodcast is coming out, and when
(22:11):
you subscribe, we might even beout there asking if there are
topics that you'd like us totalk about and find someone to
interview. So thanks so much forlistening and anything you want
to add Virginia?
Steve (22:25):
Goodbye for now.
Spotlight on Care is produced bythe University of California
Irvine, Institute on MemoryImpairments and Neurological
Disorders, UCI MIND. Interviewsfocus on personal caregiving
journeys and may not representthe views of UCI MIND.
Individuals concerned aboutcognitive disorders prevention
or treatment should seek expertdiagnosis and care. Please
(22:49):
subscribe to the Spotlight onCare Podcast wherever you
listen. For more information,visit mind.uci.edu.
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