September 17, 2024 • 26 mins
In this episode of Spotlight on Care, co-hosts Steve and Virginia are joined once again by caregiving expert Pamela D. Wilson to discuss the challenges adult children face when caring for parents who were absent, abusive, or neglectful. They explore emotional struggles, complicated family dynamics, the importance of setting boundaries, and the question of whether total forgiveness is necessary. Pamela also provides practical advice on navigating these difficult caregiving situations and emphasizes the importance of prioritizing your own well-being.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
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.
Virginia (00:21):
Welcome to Spotlight on Care. My wonderful co-host,
Mr. Steve O'Leary, and I areonce again happy to welcome our
guest today, who joined uspreviously to talk about caring
for a difficult parent. Today,we are going to talk about
caring for a parent who was nota good parent. Perhaps they
(00:43):
never wanted to be a parent.
They may have been physically ormentally abusive to the family
member who is now faced withcaring for them. Steve cared for
a spouse he loved very much. Icared for a mom who was a
wonderful parent. So we both hadthat going for us, but
caregiving is still a difficultjob. Our guest is once again,
(01:04):
Pamela D. Wilson. She is aninternational resource for
caregivers and has worked in thefield of aging and caregiving
since 1999. Pamela hassuccessfully managed care for
thousands of clients andsupports caregivers through
consultations, speaking andadvocacy. In our show notes, we
(01:25):
will again post links to herwebsite, her radio show, her
social media channels and whereto purchase her book entitled
"The Caregiving Trap (01:34):
Solutions for Life's Unexpected Changes."
Welcome, Pamela, we're glad youcould join us again to give us-
Pamela (01:48):
Thank you so much.
Virginia (01:49):
You bet, to give us- I know you're going to be full of
wonderful, helpful tips on avery difficult, another
difficult topic, right? Okay, sothe sad truth is that some of
our listeners may have had anunstable and chaotic childhood
with parents who had majorproblems and had no idea how to
(02:09):
be a good, nurturing parent. Nowthat child, who is now probably
a grown adult in their 50s or60s, is faced with caring for
that parent getting dementia.
Describe some of thosesituations and why it can be so
difficult to care for thatparent.
Pamela (02:28):
So there are two common situations that I've seen over
the years with the caregiversand the older adults that I've
helped. The first one is I referto it as ACEs. So it's adverse
childhood experiences, and theyresult from some of the things
that you mentioned. So familyabuse, physical abuse, sexual
abuse, emotional abuse, maybeliving with a parent who had
(02:51):
some mental health diagnosisthat maybe were undiagnosed or
substance use issues, maybe theywere involved in the criminal
justice system. There's alsochildren who witness domestic
violence between their parents,or children who are even
separated from parents and thenend up in foster care. So the
loss of a parent in any waygreatly affects these children.
(03:12):
And the second situation that alot of my adult caregivers talk
about is being forced to grow upquickly, and the term for that
is parentification. What itmeans is that these children
took on very adultresponsibilities from a young
age. So maybe they were caringfor their brother or sister or a
sick parent, doing householdduties. Some children serve as
(03:32):
translators for their parents iftheir parents don't speak
English. So it's almost likethis role reversal that happens
very early in life ,so somechildren under 10, some children
in their teens. And so these twosituations result in these
adults today having troublereconciling their emotions
throughout. Do I care for thisparent that I don't like? Do I
(03:53):
have to do this? Do I have tohave this relationship? And then
throughout these children'slives, they have experienced
more of their own mental healthand their own physical health
problems. So it's, it's really adifficult situation.
Virginia (04:05):
Yes, it would be. I've known people in situations where
they. It was in college when Iheard people say they didn't
like their parents, they didn'thave nurturing parents, and I
thought, "Wow, that's amazing."How important is it to
understand and admit and come toterms with the fact that you
didn't have a loving, nurturingchildhood with a caring parent.
Pamela (04:30):
For the adult children that I've worked with, it really
depends on if they want tocontinue to have a relationship
with that parent, or if they'rejust done, or if they're having
a relationship and they'resetting boundaries, and a lot of
this comes up with siblingrelationships. So a lot of
caregivers will complain abouttheir siblings. Maybe one
caregiver is helping with aparent that they really don't
(04:50):
like, and there's three othersiblings and they are not
helping out. Well, what happensis the caregiver who is usually
involved either has a sense ofresponsibility or duty. Or maybe
they had a better relationship,even though it wasn't great,
with that parent. And so thechildren who don't want to be
involved have kind of set thatboundary to say, "I didn't have
a good relationship with Mom andDad. I am not getting involved.
(05:12):
I'm not helping. It's all onyou." So it varies.
Virginia (05:16):
Yeah, and then you have to deal with those siblings
who are telling you, you know,you have to do it. No, you
don't. Yes, you do. It's, it'sgot to be a very tough situation
to try to figure out.
Steve (05:27):
I was just going to interrupt for a second. I had a,
not a perfect childhood, but Ihad no siblings, so it was, you
know, me or nobody. But what isit you suggest that you have to
kind of get your head around andaccept? Is it, you know, because
I- my son works in this space,and he talks about people who
just don't care. They just leadthem to society. So what do you
(05:49):
have to do as that child to getyourself into a place to do that
kind of care?
Pamela (05:53):
So I have a lot of children who didn't like their
parents, yet they were stillcaregivers. So like in any
relationship in our life, right,you have to accept the person,
the parent, as they are, andrealize that no matter how much
you want them to be, thatparent, you know, of your
dreams, or the parent that yourfriends had that was like,
really cool and really great,right? Your parent is never
(06:13):
going to be that. So it's thisacceptance of "This is the
parent that I have. I'm going todo my best, and I'm going to
help out the way that I can."Now, to your point, I've known
children too who favored oneparent or the other, and when
the parent that they favoredpassed away, they just
disappeared. They left thefamily, no more contact at all.
Virginia (06:33):
Wow. Do you recommend that these people in these
situations, do you recommendthey go to therapy or counseling
or something to help them kindof work through these issues?
Pamela (06:43):
First of all, you have to realize what's happened in
your family. So some of this isa generational issue, so your
parents' grandparents did thisto your parents, and so they're
doing it to you, and they may ormay not even realize that it's
happening. So until you, as thechild, grow up and see a pattern
or something, it's hard torealize that you want to get
(07:04):
yourself out of this pattern andlook at something else. And so
yes, a lot of children do go tocounseling.
Virginia (07:09):
And it can help.
Pamela (07:10):
It can help greatly. You gain all these insights about,
"Oh, that's why that happened,"or "That's why mom and dad were
that way. That's, that's whatall that meant." You don't
realize it in the moment, but20, 30 years later, it becomes
crystal clear.
Virginia (07:23):
Okay, all right, that makes sense. A person may have
had a parent who never gave themapproval. They were led to
believe they were never goodenough no matter what they did.
It would seem to me, it would bepretty hard to be a caregiver
for a parent who made you feellike you couldn't do anything
Pamela (07:40):
You know, it's very interesting. So I have helped
right.
families where there werechildren who were in this
situation, they felt like theycould never do anything right
and the parents nevercomplimented them. But on the
other hand, their siblings had avery different relationship. So
I think it depends on-- so myfamily, for example, 17 years
between the youngest and theoldest, and we had good parents,
(08:02):
so I have no complaints, but ifyou can imagine, the life
experience of my brother with myparents was very different than
mine. So in a family, theredefinitely are situations like
this, but some children willmove out of the house, get jobs,
become self sufficient, and it'snot an issue. Some children
struggle with doing that. And sowhat happens is they are seeking
(08:23):
approval. So they may be thecaregiver, and I call these
people caregiving martyrs,because they give up everything
in their life to the exclusionof, you know, no career, not
getting married, no friends, orif they're married, their
marriages break up. Everythingis to try to gain the approval
of this parent, and they neverrealized that they're never
going to get that.
Virginia (08:44):
Right.
Steve (08:45):
You know, I had a guy that I was counseling, and his
sister asked me to talk to him,and we spent several
opportunities together, and shewas frustrated because he wasn't
providing the care that shethought she should do. But he
was so involved believing thathe was the instrumental
caregiver that he couldn't hearand was at odds with his sister
(09:06):
over the issue, because to him,it was the thing that he felt
like he was finally able to do,and he didn't want to lose that
control. Have you experiencedthose kind of situations? And
what do you recommend?
Pamela (09:17):
So there are some situations where a caregiver, a
sibling, child, becomes socontrolling that they they
almost drive away their siblingsbecause they're so controlling.
For example, you can come andvisit Mom and Dad, but it's
Tuesday between three and five,and Mom eats at six o'clock, so
never call at six o'clock. Theover controlling caregivers are
(09:40):
almost like obsessive about thiscare relationship, and it places
a parent in a very vulnerablesituation. So those are very
abusive situations where I'veseen Adult Protective Services
and attorneys and the policehave to get involved because
family members will reportsuspected abuse or neglect.
Virginia (09:55):
Yeah, when you say adults, we're we are talking,
you know, 50s. These are notchildren taking care of parents.
These are grown adults withdefinite opinions.
Steve (10:05):
Correct
Pamela (10:06):
Yes
Steve (10:06):
Yeah
Virginia (10:06):
You have said before that people can feel like
they're trapped in caring for aparent who may have taught
codependency. Can you explainwhat that means to us?
Pamela (10:20):
So I've had some situations where an adult child
has lived in the home of aparent and they're still living
there 50 years later, and theparents never really supported
that child. They never reallysay, "Go out and get a job and
make friends and do all of thesethings." And so these adults who
are 50-year-old children lack alot of life skills. They don't
(10:44):
know how to get a job. Maybethey went to high school, but
they didn't do anything beyondthat. They lack social skills,
because the only people thatthey have contact with are their
parents, and some of thesechildren may be slightly
disabled. So you know, in asense, the parents really are
doing a disservice to theirchildren by making them
codependent, and at the pointwhere that relationship changes
(11:04):
and that caregiver can't be thecaregiver anymore, or the
parents die, it really is adifficult situation for that
adult child who doesn't realizethat they never had the
opportunity to create a life.
Virginia (11:14):
They don't have confidence to do that.
Pamela (11:16):
They don't even have the skills, the life skills
sometimes.
Steve (11:20):
That's got to be a very difficult situation for both the
person with the dementia andalso for the caregiver. The
caregiver is feeling, "I didn'tsign up for this, and I don't
know what to do," and at thesame time, the parent is saying,
"Help," or maybe saying, "Help,"or is argumentative and reacting
to the fact that this personnever developed their own skills
(11:43):
themselves. I could see thatbeing really very challenging.
Who steps in at that point intime, or is that where a sibling
has to step in? And what youdescribed before, what happens?
Pamela (11:53):
Sometimes, in many cases, a sibling does have to
step in. And in, most of thebrothers and sisters that I've
worked with, they're veryhesitant to quote, "upset the
apple cart," but yet, they knowthat they have a responsibility
and a duty to to the parent. Sowhat I say to these children is,
you know, "If this was you, ifyou were the parent with
dementia, and you had this childin your house who was trying to
(12:14):
take care of you but couldn't,wouldn't you want somebody to
step in?" And they're like,"Yes, I would. I don't want to
do this, but I'm going to doit." It causes a lot of
difficulties in families,especially when they have to
move that child who's beenliving in the home out of the
home, sell the home, so they canmove their parents somewhere
else where they can get care.
It's almost like, I mean,imagine being 50 years old and
(12:35):
having to learn how to cook andtake a bus and you're going to
school again, and you have tofigure out how to figure out how
to get a job, and you're 50years old, you could have done
this 30 years earlier. It's sucha struggle for these adult
children who have been placed inthese situations.
Virginia (12:51):
Kind of wasn't their fault.
Pamela (12:52):
It wasn't their fault, and it's, it's so difficult, so
difficult.
Virginia (12:57):
What happens when in a family, a parent picks a
favorite child or pits one childagainst a sibling. What are the
family dynamics there? And howdo you handle that?
Pamela (13:09):
It's really, it's a disservice to the children. It
happens, though, and again, I goback to these generational
habits that are passed down. Somaybe the grandparents did that
to the parents now, who aredoing this to their younger
children. What happens is, thechildren who aren't favorites
feel like they have noself-esteem, and they can be
depressed. The favorites,though, can feel like their
(13:29):
siblings don't like them,because their siblings are
probably angry that you get thebicycle, you get to go do this,
I don't get to do anything. Sothere's all this resentment
between siblings, but a lot oftimes, families don't talk about
it, and so what happens 20 yearslater when these parents need
care is maybe the favorite isthe caregiver, and again,
they're angry at theirnon-favorite siblings for not
(13:51):
helping, but they don't realizewhat emotional state those
siblings were in when they wereyoung, and how they felt that
they weren't important andwhatever they did didn't matter
to the parents. They were justchecked off the list and put
aside. And so these childrenthen don't get along when
they're caring for elderlyparents, and the children who
are helping have no idea howthose younger children felt. And
(14:12):
at this point, the youngerchildren, you know, who were the
unfavored so not going to bringit up. They're just going to let
it go. They don't want to talkabout it anymore, nor do they
want to talk with theirsiblings.
Virginia (14:21):
I imagine sometimes maybe a parent wanted a girl and
they had a boy, or they wanted aboy and they had a girl, it just
didn't start off well.
Pamela (14:29):
Or the parents were good at sports, and this poor child
can't hit a baseball bat. It's,it's all these expectations,
right?
Steve (14:35):
When you when you're talking about this whole sibling
interaction, what do yourecommend to siblings that are
in disagreement. You know, theycan't come to consensus. Whether
they're at odds or they havesome of these deeper problems
that you're describing, or justthe general idea that they're in
disagreement, and as a result,nothing's happening, or they're
fighting, or whatever. What doyou recommend in those
(14:56):
situations?
Pamela (14:57):
I have had groups of siblings come to my office and
talk about what they believe isbest for a parent or why they
disagree. And the goal is to tryto get everybody, nobody is ever
always going to agree, but ifthey can at least agree on some
things about who can dosomething and who can't do
something, and how they canparticipate. So there's, I say,
(15:19):
to make a sibling agreement. Soput it on paper. There's six
kids. This is what I can do.
This is what I can't do, andeven if I disagree, I'm going to
be supportive of everybody else.
So you kind of have to stop the,you know, favoritism or the
triangulation, so that at leasteverybody's even if they don't
agree, they're supporting theplan for the parents.
Steve (15:37):
That makes a lot of sense. And I can see that roles
would be established then, andthat helps kind of
differentiate, well, I'mresponsible for food, or I'm
responsible for taking them tothe doctor, or whatever it might
be, and, oh, okay, that's mypart of the job. So I feel like
I'm involved, and it's defined.
That helps.
Virginia (15:55):
Yes, yes, I've talked to some families where there's
somebody whose strength isfinances, so they take that
portion and somebody else ismore nurturing, and they take
medical care, whatever. But ifeverybody has their own role, it
Pamela (16:05):
Makes it much easier.
can clarify things I wouldimagine
Virginia (16:13):
That leads us into another question for you, what
if you have a blended familywhere there are two parents and
then two sets of children withseparate and different interests
about their inheritances orcaring for the parent with
dementia?
Pamela (16:29):
That happens mostly when what I call in remarriages or
separations. So when parentsmaybe remarry and the children
have already been out of thehouse on their own, then you do
have two sets of parents and twosets of children. That kind of
goes back to the siblingagreements of we will take care
of our parent. You take care ofyour parent. But if the couple
(16:51):
didn't do a premarital agreementor spell out how money was to be
used for whose care and eitherequally or all the care goes to
one person. I mean, that's kindof where these children get into
huge disagreements, becausethey're saying, "Well, that
mother, who is not our mother,is sick. Dad's spending all the
money on her, which is eithergoing to affect Dad's care or
(17:13):
our inheritance." So the parentshave to really bring these
children together, and theyshould set the stage before they
get dementia, to say, "Look,this is the way it's going to
be. Each of us, as spouses, aregoing to get the care that we
need. This is how the money'sset up. This is who our power of
attorneys are." You kind of setthe lay of the land if you can,
to avoid very litigious familysituations when these things
(17:33):
happen.
Steve (17:34):
You know, I did remarry.
I lost my wife, and I remarried,and I was told, encouraged, to
do a prenuptial agreement, whichfrom my generation, was like,
"What? What are you talkingabout?" This is something we'll
just discuss. And, you know, Igot a lot of great advice, and I
did it, and I think that it's anecessity if you're going to
remarry, because it eliminatesthese things. My kids weren't
(17:56):
thrilled about the fact that,you know, all of this stuff, but
everybody knew. Now I have amuch better relationship with my
wife's children, because it'sall clear. In fact, one of the
things we agreed upon was I'mliving in her house, and so,
well, what happens if she passesbefore I do? Do I have to move
out? You know, all of thesekinds of things. So in our
agreement, there's time in theagreement for me to stay here
(18:17):
for a period of time before Ihave to do anything. So I think
that's really important, gettingall this stuff decided upon in
advance.
Virginia (18:27):
Very smart.
Pamela (18:28):
It's so wise, so wise.
Virginia (18:30):
No it is. And I think sometimes it's just
uncomfortable, but it's muchbetter if you do those things.
We have two questions for you.
Is total forgiveness necessary,and what if you decide that you
need to prioritize your own wellbeing and you just cannot be the
caregiver for that parent? Isthat okay?
Pamela (18:52):
For the children that I've worked with, I always say
that forgiveness is anindividual choice. You honestly
don't have to forgive somebodyto help them, if you can look
beyond all the bad things in therelationship. And again, I've
known a lot of children who dothis to say, "You know what, my
parents were not good. I have aduty and a responsibility to
care for them. I'm going to."Then I know other children who
just say, "I can't do it. I'mstill living through all the
(19:15):
trauma of the childhood thingsthat happened. I don't want to
do it, but what I will do is Iwill either pay somebody else to
help, or I will pay somebody tocreate a plan for my parents
about how they can go get thecare they need without me being
involved." So it's definitelyokay to say that you can't be
the caregiver, because somepeople should not be caregivers.
Virginia (19:34):
Great. It's one of the hardest jobs in the world. It
really is. If you decide thatyou do want to take on the
responsibilities of being thecaregiver, how important is it
to set boundaries? And how doyou do that?
Pamela (19:46):
Extremely important.
I've seen adult children whohave done this, and at first
they help as they can, andeventually there's a point where
they just hit a wall and they'relike, "Oh my gosh, I can't do
this anymore." And they realizethat they have to start setting
boundaries. So it may be call mymom or dad once a week, and I'll
visit this much. They limit theamount of contact, because the
(20:07):
contact with the parent is justhorrible. And you know, if a
parent has dementia, that's awhole different thing, because
then is there a power ofattorney? So is one of these
children power of attorney? Theydo have a legal responsibility
to be involved. They can'treally say, I'm not going to do
this. If they accepted thatresponsibility, they have to do
it. And then the familycomplications come in. So you're
(20:29):
caring for a parent withdementia who you don't like, and
you're married, and your spouseis saying, I need more time with
you. I realize you're spendingthis time with your parents. So
then you kind of have to choosewho you're going to spend your
time with, who's the mostimportant relationship, and not
to say that the parents are not.
But I believe that people whoare married should stick to
their marital relationships andtheir duties to themselves and
(20:51):
their children, even over andabove a parent, because a
parent's care can be arrangedthrough Medicaid programs and
other things. It doesn't alwayshave to be that child doing it.
Virginia (21:02):
Okay, okay
Steve (21:04):
Yeah, I think you raise a really good point. I mean, you
have your own life, and you haveto fit in this caregiving role,
but it should not damage oreliminate your role as a parent
or a spouse or whatever it mightbe. And you lose that part of
Pamela (21:17):
It happens well, and the children have to be the ones to
your life, you can't give thatup. Of course, we see
occasionally this marriagebetween two people, and they
become so, so codependent. I'mtalking about the parents now
that once one goes the other onegoes immediately after, because
they don't know what to dowithout the other one, which is
(21:37):
sad, but it happens.
break these cycles of theexpectations of the parents.
Otherwise, it just gets passeddown from generation to
generation to generation.
Steve (21:47):
So a little transparency is a good idea, and a little
conversation is even moreimportant.
Pamela (21:52):
Conversation is extremely important, even if
it's extremely uncomfortable.
Virginia (21:56):
And the sooner, the better, right? Early as
possible, I know it's hard. Itreally is the smart thing to do.
Steve (22:02):
I don't know if you've experienced this, but when I was
putting together the paperworkin terms of my first wife's
illness, and just making sureeverything was in order, and
having conversations with mychildren about the paperwork and
taking them through it, wasdifficult because it brought up
the idea that their loved one,mother, or even in my case, I
was going to pass awayeventually. And so it was
(22:24):
challenging. What would yourecommend to some of the adult
children who might be listeningto say that I didn't go to
college, that there's no classfor this? But in reality, this
is something that you need toexpect and figure out ways to
embrace.
Pamela (22:36):
In a perfect world, if you can do it before anybody is
sick, that's the best thing.
Most people don't though,unfortunately, they don't do it
until somebody has an illnessand death may be coming. It's
never easy to have theseconversations, but it's
important to your point. You'vegot to be able to talk about it
with your children, and maybeyou set the stage to say, "I
really want to talk to you aboutsomething very uncomfortable.
(22:56):
Can we schedule time? These arethe three things that I want to
talk about," so that they're notcoming into a conversation
thinking it's going to besomething else and it's totally
something else, so kind of likefair warning about what we need
to talk about and the importanceof why we need to talk about it.
Steve (23:12):
Yeah, I even had my attorney have a conversation,
that I was there for with them,just because it was somehow a
third party and it was abusiness discussion, whereas
with me, it was more personal. Idon't know if that's a good
suggestion or not, but it workedwell in our situation.
Pamela (23:27):
It does help if you can have an independent party do
that, and sometimes, in somesituations, depending on the
family assets, money, it's goodto have a witness, and it's
actually good to videotape theconversations, because I've been
in some knockdown, drag out,will contests where parents were
very clear about what theywanted, and the children were
fighting over it. These are justtough discussions to have, and
(23:51):
the more that you can do themout in the open and be
transparent and again, videotapethem if you need to, the better.
Virginia (23:56):
Are you ever in a discussion with the adult
children and the parents, wheresomebody says "You are a lousy
parent, you didn't take care ofus."` I mean, does that does
that occur? Do they just try notto bring that up?
Pamela (24:09):
In meetings where the parents and the children have
been present, usually, I speakto both parties before we have
the meeting, so I kind of knowwhat's going on in the
background, and I really dosuggest not going there. I mean,
while that may be the way thatyou feel, that's better on a
one-to-one conversation insteadof in a group conversation, and
then, if you're going to have aone-to-one conversation, what do
you really want from that? Doyou just -- are you trying to
(24:30):
get the parent to acknowledgethat they were a bad parent? And
what difference is that going tomake at this point in life, if a
parent has dementia, they can'tchange, they probably don't even
remember that they were a badparent.
Virginia (24:40):
So true. Before we wrap up, do you have any other
questions for Pamela, Steve?
Steve (24:45):
No, I just like to say thank you again for appearing
here, but thank you for what youdo for others. I think that
sometimes we don't always getthat little, maybe you get
enough, but I think that you'redoing special work. I would even
say you're following the Lord'scalling.
Virginia (25:01):
I agree.
Steve (25:01):
So well done, Pamela.
Pamela (25:03):
Thank you. I appreciate it. Well, and thank you for
sharing your story about yourpremarital discussion and all of
that, because I think people doneed to hear that. You know,
while people didn't do thatyears ago, it's really something
that it's okay to do.
Virginia (25:15):
Yes, that is so true.
And you know, with you now, thisis the second podcast we've
talked about some reallydifficult topics, but you always
seem to give us such goodinformation and good advice, and
we do appreciate it.
Pamela (25:28):
I've been blessed to be able to help a lot of people to
have the experience to do this.
Virginia (25:32):
Must be fulfilling.
Pamela (25:33):
It is.
Virginia (25:34):
Yeah, Steve's right.
Again, Pamela's website ispameladwilson.com and her book
is called "The Caregiving Trap: Solutions for Life's Unexpected (25:37):
undefined
Changes," and we'll put thelinks to all of her resources in
our show notes. And to ourlisteners, thank you again for
tuning in today and join usagain soon for another episode
on Spotlight on Care.
Steve (25:58):
Spotlight on Care is produced by the University of
California, Irvine Institute onMemory Impairments and
Neurological Disorders, UCIMIND. Interviews focus on
personal caregiving journeys,and may not represent the views
of UCI MIND. Individualsconcerned about cognitive
disorders, prevention ortreatment should seek expert
(26:18):
diagnosis and care. Pleasesubscribe to the Spotlight on
Care podcast wherever youlisten. 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.
Virginia (00:21):
Welcome to Spotlight on Care. My wonderful co-host,
Mr. Steve O'Leary, and I areonce again happy to welcome our
guest today, who joined uspreviously to talk about caring
for a difficult parent. Today,we are going to talk about
caring for a parent who was nota good parent. Perhaps they
(00:43):
never wanted to be a parent.
They may have been physically ormentally abusive to the family
member who is now faced withcaring for them. Steve cared for
a spouse he loved very much. Icared for a mom who was a
wonderful parent. So we both hadthat going for us, but
caregiving is still a difficultjob. Our guest is once again,
(01:04):
Pamela D. Wilson. She is aninternational resource for
caregivers and has worked in thefield of aging and caregiving
since 1999. Pamela hassuccessfully managed care for
thousands of clients andsupports caregivers through
consultations, speaking andadvocacy. In our show notes, we
(01:25):
will again post links to herwebsite, her radio show, her
social media channels and whereto purchase her book entitled
"The Caregiving Trap (01:34):
Solutions for Life's Unexpected Changes."
Welcome, Pamela, we're glad youcould join us again to give us-
Pamela (01:48):
Thank you so much.
Virginia (01:49):
You bet, to give us- I know you're going to be full of
wonderful, helpful tips on avery difficult, another
difficult topic, right? Okay, sothe sad truth is that some of
our listeners may have had anunstable and chaotic childhood
with parents who had majorproblems and had no idea how to
(02:09):
be a good, nurturing parent. Nowthat child, who is now probably
a grown adult in their 50s or60s, is faced with caring for
that parent getting dementia.
Describe some of thosesituations and why it can be so
difficult to care for thatparent.
Pamela (02:28):
So there are two common situations that I've seen over
the years with the caregiversand the older adults that I've
helped. The first one is I referto it as ACEs. So it's adverse
childhood experiences, and theyresult from some of the things
that you mentioned. So familyabuse, physical abuse, sexual
abuse, emotional abuse, maybeliving with a parent who had
(02:51):
some mental health diagnosisthat maybe were undiagnosed or
substance use issues, maybe theywere involved in the criminal
justice system. There's alsochildren who witness domestic
violence between their parents,or children who are even
separated from parents and thenend up in foster care. So the
loss of a parent in any waygreatly affects these children.
(03:12):
And the second situation that alot of my adult caregivers talk
about is being forced to grow upquickly, and the term for that
is parentification. What itmeans is that these children
took on very adultresponsibilities from a young
age. So maybe they were caringfor their brother or sister or a
sick parent, doing householdduties. Some children serve as
(03:32):
translators for their parents iftheir parents don't speak
English. So it's almost likethis role reversal that happens
very early in life ,so somechildren under 10, some children
in their teens. And so these twosituations result in these
adults today having troublereconciling their emotions
throughout. Do I care for thisparent that I don't like? Do I
(03:53):
have to do this? Do I have tohave this relationship? And then
throughout these children'slives, they have experienced
more of their own mental healthand their own physical health
problems. So it's, it's really adifficult situation.
Virginia (04:05):
Yes, it would be. I've known people in situations where
they. It was in college when Iheard people say they didn't
like their parents, they didn'thave nurturing parents, and I
thought, "Wow, that's amazing."How important is it to
understand and admit and come toterms with the fact that you
didn't have a loving, nurturingchildhood with a caring parent.
Pamela (04:30):
For the adult children that I've worked with, it really
depends on if they want tocontinue to have a relationship
with that parent, or if they'rejust done, or if they're having
a relationship and they'resetting boundaries, and a lot of
this comes up with siblingrelationships. So a lot of
caregivers will complain abouttheir siblings. Maybe one
caregiver is helping with aparent that they really don't
(04:50):
like, and there's three othersiblings and they are not
helping out. Well, what happensis the caregiver who is usually
involved either has a sense ofresponsibility or duty. Or maybe
they had a better relationship,even though it wasn't great,
with that parent. And so thechildren who don't want to be
involved have kind of set thatboundary to say, "I didn't have
a good relationship with Mom andDad. I am not getting involved.
(05:12):
I'm not helping. It's all onyou." So it varies.
Virginia (05:16):
Yeah, and then you have to deal with those siblings
who are telling you, you know,you have to do it. No, you
don't. Yes, you do. It's, it'sgot to be a very tough situation
to try to figure out.
Steve (05:27):
I was just going to interrupt for a second. I had a,
not a perfect childhood, but Ihad no siblings, so it was, you
know, me or nobody. But what isit you suggest that you have to
kind of get your head around andaccept? Is it, you know, because
I- my son works in this space,and he talks about people who
just don't care. They just leadthem to society. So what do you
(05:49):
have to do as that child to getyourself into a place to do that
kind of care?
Pamela (05:53):
So I have a lot of children who didn't like their
parents, yet they were stillcaregivers. So like in any
relationship in our life, right,you have to accept the person,
the parent, as they are, andrealize that no matter how much
you want them to be, thatparent, you know, of your
dreams, or the parent that yourfriends had that was like,
really cool and really great,right? Your parent is never
(06:13):
going to be that. So it's thisacceptance of "This is the
parent that I have. I'm going todo my best, and I'm going to
help out the way that I can."Now, to your point, I've known
children too who favored oneparent or the other, and when
the parent that they favoredpassed away, they just
disappeared. They left thefamily, no more contact at all.
Virginia (06:33):
Wow. Do you recommend that these people in these
situations, do you recommendthey go to therapy or counseling
or something to help them kindof work through these issues?
Pamela (06:43):
First of all, you have to realize what's happened in
your family. So some of this isa generational issue, so your
parents' grandparents did thisto your parents, and so they're
doing it to you, and they may ormay not even realize that it's
happening. So until you, as thechild, grow up and see a pattern
or something, it's hard torealize that you want to get
(07:04):
yourself out of this pattern andlook at something else. And so
yes, a lot of children do go tocounseling.
Virginia (07:09):
And it can help.
Pamela (07:10):
It can help greatly. You gain all these insights about,
"Oh, that's why that happened,"or "That's why mom and dad were
that way. That's, that's whatall that meant." You don't
realize it in the moment, but20, 30 years later, it becomes
crystal clear.
Virginia (07:23):
Okay, all right, that makes sense. A person may have
had a parent who never gave themapproval. They were led to
believe they were never goodenough no matter what they did.
It would seem to me, it would bepretty hard to be a caregiver
for a parent who made you feellike you couldn't do anything
Pamela (07:40):
You know, it's very interesting. So I have helped
right.
families where there werechildren who were in this
situation, they felt like theycould never do anything right
and the parents nevercomplimented them. But on the
other hand, their siblings had avery different relationship. So
I think it depends on-- so myfamily, for example, 17 years
between the youngest and theoldest, and we had good parents,
(08:02):
so I have no complaints, but ifyou can imagine, the life
experience of my brother with myparents was very different than
mine. So in a family, theredefinitely are situations like
this, but some children willmove out of the house, get jobs,
become self sufficient, and it'snot an issue. Some children
struggle with doing that. And sowhat happens is they are seeking
(08:23):
approval. So they may be thecaregiver, and I call these
people caregiving martyrs,because they give up everything
in their life to the exclusionof, you know, no career, not
getting married, no friends, orif they're married, their
marriages break up. Everythingis to try to gain the approval
of this parent, and they neverrealized that they're never
going to get that.
Virginia (08:44):
Right.
Steve (08:45):
You know, I had a guy that I was counseling, and his
sister asked me to talk to him,and we spent several
opportunities together, and shewas frustrated because he wasn't
providing the care that shethought she should do. But he
was so involved believing thathe was the instrumental
caregiver that he couldn't hearand was at odds with his sister
(09:06):
over the issue, because to him,it was the thing that he felt
like he was finally able to do,and he didn't want to lose that
control. Have you experiencedthose kind of situations? And
what do you recommend?
Pamela (09:17):
So there are some situations where a caregiver, a
sibling, child, becomes socontrolling that they they
almost drive away their siblingsbecause they're so controlling.
For example, you can come andvisit Mom and Dad, but it's
Tuesday between three and five,and Mom eats at six o'clock, so
never call at six o'clock. Theover controlling caregivers are
(09:40):
almost like obsessive about thiscare relationship, and it places
a parent in a very vulnerablesituation. So those are very
abusive situations where I'veseen Adult Protective Services
and attorneys and the policehave to get involved because
family members will reportsuspected abuse or neglect.
Virginia (09:55):
Yeah, when you say adults, we're we are talking,
you know, 50s. These are notchildren taking care of parents.
These are grown adults withdefinite opinions.
Steve (10:05):
Correct
Pamela (10:06):
Yes
Steve (10:06):
Yeah
Virginia (10:06):
You have said before that people can feel like
they're trapped in caring for aparent who may have taught
codependency. Can you explainwhat that means to us?
Pamela (10:20):
So I've had some situations where an adult child
has lived in the home of aparent and they're still living
there 50 years later, and theparents never really supported
that child. They never reallysay, "Go out and get a job and
make friends and do all of thesethings." And so these adults who
are 50-year-old children lack alot of life skills. They don't
(10:44):
know how to get a job. Maybethey went to high school, but
they didn't do anything beyondthat. They lack social skills,
because the only people thatthey have contact with are their
parents, and some of thesechildren may be slightly
disabled. So you know, in asense, the parents really are
doing a disservice to theirchildren by making them
codependent, and at the pointwhere that relationship changes
(11:04):
and that caregiver can't be thecaregiver anymore, or the
parents die, it really is adifficult situation for that
adult child who doesn't realizethat they never had the
opportunity to create a life.
Virginia (11:14):
They don't have confidence to do that.
Pamela (11:16):
They don't even have the skills, the life skills
sometimes.
Steve (11:20):
That's got to be a very difficult situation for both the
person with the dementia andalso for the caregiver. The
caregiver is feeling, "I didn'tsign up for this, and I don't
know what to do," and at thesame time, the parent is saying,
"Help," or maybe saying, "Help,"or is argumentative and reacting
to the fact that this personnever developed their own skills
(11:43):
themselves. I could see thatbeing really very challenging.
Who steps in at that point intime, or is that where a sibling
has to step in? And what youdescribed before, what happens?
Pamela (11:53):
Sometimes, in many cases, a sibling does have to
step in. And in, most of thebrothers and sisters that I've
worked with, they're veryhesitant to quote, "upset the
apple cart," but yet, they knowthat they have a responsibility
and a duty to to the parent. Sowhat I say to these children is,
you know, "If this was you, ifyou were the parent with
dementia, and you had this childin your house who was trying to
(12:14):
take care of you but couldn't,wouldn't you want somebody to
step in?" And they're like,"Yes, I would. I don't want to
do this, but I'm going to doit." It causes a lot of
difficulties in families,especially when they have to
move that child who's beenliving in the home out of the
home, sell the home, so they canmove their parents somewhere
else where they can get care.
It's almost like, I mean,imagine being 50 years old and
(12:35):
having to learn how to cook andtake a bus and you're going to
school again, and you have tofigure out how to figure out how
to get a job, and you're 50years old, you could have done
this 30 years earlier. It's sucha struggle for these adult
children who have been placed inthese situations.
Virginia (12:51):
Kind of wasn't their fault.
Pamela (12:52):
It wasn't their fault, and it's, it's so difficult, so
difficult.
Virginia (12:57):
What happens when in a family, a parent picks a
favorite child or pits one childagainst a sibling. What are the
family dynamics there? And howdo you handle that?
Pamela (13:09):
It's really, it's a disservice to the children. It
happens, though, and again, I goback to these generational
habits that are passed down. Somaybe the grandparents did that
to the parents now, who aredoing this to their younger
children. What happens is, thechildren who aren't favorites
feel like they have noself-esteem, and they can be
depressed. The favorites,though, can feel like their
(13:29):
siblings don't like them,because their siblings are
probably angry that you get thebicycle, you get to go do this,
I don't get to do anything. Sothere's all this resentment
between siblings, but a lot oftimes, families don't talk about
it, and so what happens 20 yearslater when these parents need
care is maybe the favorite isthe caregiver, and again,
they're angry at theirnon-favorite siblings for not
(13:51):
helping, but they don't realizewhat emotional state those
siblings were in when they wereyoung, and how they felt that
they weren't important andwhatever they did didn't matter
to the parents. They were justchecked off the list and put
aside. And so these childrenthen don't get along when
they're caring for elderlyparents, and the children who
are helping have no idea howthose younger children felt. And
(14:12):
at this point, the youngerchildren, you know, who were the
unfavored so not going to bringit up. They're just going to let
it go. They don't want to talkabout it anymore, nor do they
want to talk with theirsiblings.
Virginia (14:21):
I imagine sometimes maybe a parent wanted a girl and
they had a boy, or they wanted aboy and they had a girl, it just
didn't start off well.
Pamela (14:29):
Or the parents were good at sports, and this poor child
can't hit a baseball bat. It's,it's all these expectations,
right?
Steve (14:35):
When you when you're talking about this whole sibling
interaction, what do yourecommend to siblings that are
in disagreement. You know, theycan't come to consensus. Whether
they're at odds or they havesome of these deeper problems
that you're describing, or justthe general idea that they're in
disagreement, and as a result,nothing's happening, or they're
fighting, or whatever. What doyou recommend in those
(14:56):
situations?
Pamela (14:57):
I have had groups of siblings come to my office and
talk about what they believe isbest for a parent or why they
disagree. And the goal is to tryto get everybody, nobody is ever
always going to agree, but ifthey can at least agree on some
things about who can dosomething and who can't do
something, and how they canparticipate. So there's, I say,
(15:19):
to make a sibling agreement. Soput it on paper. There's six
kids. This is what I can do.
This is what I can't do, andeven if I disagree, I'm going to
be supportive of everybody else.
So you kind of have to stop the,you know, favoritism or the
triangulation, so that at leasteverybody's even if they don't
agree, they're supporting theplan for the parents.
Steve (15:37):
That makes a lot of sense. And I can see that roles
would be established then, andthat helps kind of
differentiate, well, I'mresponsible for food, or I'm
responsible for taking them tothe doctor, or whatever it might
be, and, oh, okay, that's mypart of the job. So I feel like
I'm involved, and it's defined.
That helps.
Virginia (15:55):
Yes, yes, I've talked to some families where there's
somebody whose strength isfinances, so they take that
portion and somebody else ismore nurturing, and they take
medical care, whatever. But ifeverybody has their own role, it
Pamela (16:05):
Makes it much easier.
can clarify things I wouldimagine
Virginia (16:13):
That leads us into another question for you, what
if you have a blended familywhere there are two parents and
then two sets of children withseparate and different interests
about their inheritances orcaring for the parent with
dementia?
Pamela (16:29):
That happens mostly when what I call in remarriages or
separations. So when parentsmaybe remarry and the children
have already been out of thehouse on their own, then you do
have two sets of parents and twosets of children. That kind of
goes back to the siblingagreements of we will take care
of our parent. You take care ofyour parent. But if the couple
(16:51):
didn't do a premarital agreementor spell out how money was to be
used for whose care and eitherequally or all the care goes to
one person. I mean, that's kindof where these children get into
huge disagreements, becausethey're saying, "Well, that
mother, who is not our mother,is sick. Dad's spending all the
money on her, which is eithergoing to affect Dad's care or
(17:13):
our inheritance." So the parentshave to really bring these
children together, and theyshould set the stage before they
get dementia, to say, "Look,this is the way it's going to
be. Each of us, as spouses, aregoing to get the care that we
need. This is how the money'sset up. This is who our power of
attorneys are." You kind of setthe lay of the land if you can,
to avoid very litigious familysituations when these things
(17:33):
happen.
Steve (17:34):
You know, I did remarry.
I lost my wife, and I remarried,and I was told, encouraged, to
do a prenuptial agreement, whichfrom my generation, was like,
"What? What are you talkingabout?" This is something we'll
just discuss. And, you know, Igot a lot of great advice, and I
did it, and I think that it's anecessity if you're going to
remarry, because it eliminatesthese things. My kids weren't
(17:56):
thrilled about the fact that,you know, all of this stuff, but
everybody knew. Now I have amuch better relationship with my
wife's children, because it'sall clear. In fact, one of the
things we agreed upon was I'mliving in her house, and so,
well, what happens if she passesbefore I do? Do I have to move
out? You know, all of thesekinds of things. So in our
agreement, there's time in theagreement for me to stay here
(18:17):
for a period of time before Ihave to do anything. So I think
that's really important, gettingall this stuff decided upon in
advance.
Virginia (18:27):
Very smart.
Pamela (18:28):
It's so wise, so wise.
Virginia (18:30):
No it is. And I think sometimes it's just
uncomfortable, but it's muchbetter if you do those things.
We have two questions for you.
Is total forgiveness necessary,and what if you decide that you
need to prioritize your own wellbeing and you just cannot be the
caregiver for that parent? Isthat okay?
Pamela (18:52):
For the children that I've worked with, I always say
that forgiveness is anindividual choice. You honestly
don't have to forgive somebodyto help them, if you can look
beyond all the bad things in therelationship. And again, I've
known a lot of children who dothis to say, "You know what, my
parents were not good. I have aduty and a responsibility to
care for them. I'm going to."Then I know other children who
just say, "I can't do it. I'mstill living through all the
(19:15):
trauma of the childhood thingsthat happened. I don't want to
do it, but what I will do is Iwill either pay somebody else to
help, or I will pay somebody tocreate a plan for my parents
about how they can go get thecare they need without me being
involved." So it's definitelyokay to say that you can't be
the caregiver, because somepeople should not be caregivers.
Virginia (19:34):
Great. It's one of the hardest jobs in the world. It
really is. If you decide thatyou do want to take on the
responsibilities of being thecaregiver, how important is it
to set boundaries? And how doyou do that?
Pamela (19:46):
Extremely important.
I've seen adult children whohave done this, and at first
they help as they can, andeventually there's a point where
they just hit a wall and they'relike, "Oh my gosh, I can't do
this anymore." And they realizethat they have to start setting
boundaries. So it may be call mymom or dad once a week, and I'll
visit this much. They limit theamount of contact, because the
(20:07):
contact with the parent is justhorrible. And you know, if a
parent has dementia, that's awhole different thing, because
then is there a power ofattorney? So is one of these
children power of attorney? Theydo have a legal responsibility
to be involved. They can'treally say, I'm not going to do
this. If they accepted thatresponsibility, they have to do
it. And then the familycomplications come in. So you're
(20:29):
caring for a parent withdementia who you don't like, and
you're married, and your spouseis saying, I need more time with
you. I realize you're spendingthis time with your parents. So
then you kind of have to choosewho you're going to spend your
time with, who's the mostimportant relationship, and not
to say that the parents are not.
But I believe that people whoare married should stick to
their marital relationships andtheir duties to themselves and
(20:51):
their children, even over andabove a parent, because a
parent's care can be arrangedthrough Medicaid programs and
other things. It doesn't alwayshave to be that child doing it.
Virginia (21:02):
Okay, okay
Steve (21:04):
Yeah, I think you raise a really good point. I mean, you
have your own life, and you haveto fit in this caregiving role,
but it should not damage oreliminate your role as a parent
or a spouse or whatever it mightbe. And you lose that part of
Pamela (21:17):
It happens well, and the children have to be the ones to
your life, you can't give thatup. Of course, we see
occasionally this marriagebetween two people, and they
become so, so codependent. I'mtalking about the parents now
that once one goes the other onegoes immediately after, because
they don't know what to dowithout the other one, which is
(21:37):
sad, but it happens.
break these cycles of theexpectations of the parents.
Otherwise, it just gets passeddown from generation to
generation to generation.
Steve (21:47):
So a little transparency is a good idea, and a little
conversation is even moreimportant.
Pamela (21:52):
Conversation is extremely important, even if
it's extremely uncomfortable.
Virginia (21:56):
And the sooner, the better, right? Early as
possible, I know it's hard. Itreally is the smart thing to do.
Steve (22:02):
I don't know if you've experienced this, but when I was
putting together the paperworkin terms of my first wife's
illness, and just making sureeverything was in order, and
having conversations with mychildren about the paperwork and
taking them through it, wasdifficult because it brought up
the idea that their loved one,mother, or even in my case, I
was going to pass awayeventually. And so it was
(22:24):
challenging. What would yourecommend to some of the adult
children who might be listeningto say that I didn't go to
college, that there's no classfor this? But in reality, this
is something that you need toexpect and figure out ways to
embrace.
Pamela (22:36):
In a perfect world, if you can do it before anybody is
sick, that's the best thing.
Most people don't though,unfortunately, they don't do it
until somebody has an illnessand death may be coming. It's
never easy to have theseconversations, but it's
important to your point. You'vegot to be able to talk about it
with your children, and maybeyou set the stage to say, "I
really want to talk to you aboutsomething very uncomfortable.
(22:56):
Can we schedule time? These arethe three things that I want to
talk about," so that they're notcoming into a conversation
thinking it's going to besomething else and it's totally
something else, so kind of likefair warning about what we need
to talk about and the importanceof why we need to talk about it.
Steve (23:12):
Yeah, I even had my attorney have a conversation,
that I was there for with them,just because it was somehow a
third party and it was abusiness discussion, whereas
with me, it was more personal. Idon't know if that's a good
suggestion or not, but it workedwell in our situation.
Pamela (23:27):
It does help if you can have an independent party do
that, and sometimes, in somesituations, depending on the
family assets, money, it's goodto have a witness, and it's
actually good to videotape theconversations, because I've been
in some knockdown, drag out,will contests where parents were
very clear about what theywanted, and the children were
fighting over it. These are justtough discussions to have, and
(23:51):
the more that you can do themout in the open and be
transparent and again, videotapethem if you need to, the better.
Virginia (23:56):
Are you ever in a discussion with the adult
children and the parents, wheresomebody says "You are a lousy
parent, you didn't take care ofus."` I mean, does that does
that occur? Do they just try notto bring that up?
Pamela (24:09):
In meetings where the parents and the children have
been present, usually, I speakto both parties before we have
the meeting, so I kind of knowwhat's going on in the
background, and I really dosuggest not going there. I mean,
while that may be the way thatyou feel, that's better on a
one-to-one conversation insteadof in a group conversation, and
then, if you're going to have aone-to-one conversation, what do
you really want from that? Doyou just -- are you trying to
(24:30):
get the parent to acknowledgethat they were a bad parent? And
what difference is that going tomake at this point in life, if a
parent has dementia, they can'tchange, they probably don't even
remember that they were a badparent.
Virginia (24:40):
So true. Before we wrap up, do you have any other
questions for Pamela, Steve?
Steve (24:45):
No, I just like to say thank you again for appearing
here, but thank you for what youdo for others. I think that
sometimes we don't always getthat little, maybe you get
enough, but I think that you'redoing special work. I would even
say you're following the Lord'scalling.
Virginia (25:01):
I agree.
Steve (25:01):
So well done, Pamela.
Pamela (25:03):
Thank you. I appreciate it. Well, and thank you for
sharing your story about yourpremarital discussion and all of
that, because I think people doneed to hear that. You know,
while people didn't do thatyears ago, it's really something
that it's okay to do.
Virginia (25:15):
Yes, that is so true.
And you know, with you now, thisis the second podcast we've
talked about some reallydifficult topics, but you always
seem to give us such goodinformation and good advice, and
we do appreciate it.
Pamela (25:28):
I've been blessed to be able to help a lot of people to
have the experience to do this.
Virginia (25:32):
Must be fulfilling.
Pamela (25:33):
It is.
Virginia (25:34):
Yeah, Steve's right.
Again, Pamela's website ispameladwilson.com and her book
is called "The Caregiving Trap: Solutions for Life's Unexpected (25:37):
undefined
Changes," and we'll put thelinks to all of her resources in
our show notes. And to ourlisteners, thank you again for
tuning in today and join usagain soon for another episode
on Spotlight on Care.
Steve (25:58):
Spotlight on Care is produced by the University of
California, Irvine Institute onMemory Impairments and
Neurological Disorders, UCIMIND. Interviews focus on
personal caregiving journeys,and may not represent the views
of UCI MIND. Individualsconcerned about cognitive
disorders, prevention ortreatment should seek expert
(26:18):
diagnosis and care. Pleasesubscribe to the Spotlight on
Care podcast wherever youlisten. For more information,
visit mind.uci.edu.
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