Spotlight on Care: Alzheimer's Caregiving

Navigating Relationships with a Parent Who Was Abusive or Absent with Pamela D. Wilson

• UCI MIND • Season 1 • Episode 44

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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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Steve:

From the University of California, Irvine. This is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.

Virginia:

Welcome to Spotlight on Care. My wonderful co-host, Mr. Steve O'Leary, and I are once again happy to welcome our guest today, who joined us previously to talk about caring for a difficult parent. Today, we are going to talk about caring for a parent who was not a good parent. Perhaps they never wanted to be a parent. They may have been physically or mentally abusive to the family member who is now faced with caring for them. Steve cared for a spouse he loved very much. I cared for a mom who was a wonderful parent. So we both had that going for us, but caregiving is still a difficult job. Our guest is once again, Pamela D. Wilson. She is an international resource for caregivers and has worked in the field of aging and caregiving since 1999. Pamela has successfully managed care for thousands of clients and supports caregivers through consultations, speaking and advocacy. In our show notes, we will again post links to her website, her radio show, her social media channels and where to purchase her book entitled"The Caregiving Trap: Solutions for Life's Unexpected Changes." Welcome, Pamela, we're glad you could join us again to give us-

Pamela:

Thank you so much.

Virginia:

You bet, to give us- I know you're going to be full of wonderful, helpful tips on a very difficult, another difficult topic, right? Okay, so the sad truth is that some of our listeners may have had an unstable and chaotic childhood with parents who had major problems and had no idea how to be a good, nurturing parent. Now that child, who is now probably a grown adult in their 50s or 60s, is faced with caring for that parent getting dementia. Describe some of those situations and why it can be so difficult to care for that parent.

Pamela:

So there are two common situations that I've seen over the years with the caregivers and the older adults that I've helped. The first one is I refer to it as ACEs. So it's adverse childhood experiences, and they result from some of the things that you mentioned. So family abuse, physical abuse, sexual abuse, emotional abuse, maybe living with a parent who had some mental health diagnosis that maybe were undiagnosed or substance use issues, maybe they were involved in the criminal justice system. There's also children who witness domestic violence between their parents, or children who are even separated from parents and then end up in foster care. So the loss of a parent in any way greatly affects these children. And the second situation that a lot of my adult caregivers talk about is being forced to grow up quickly, and the term for that is parentification. What it means is that these children took on very adult responsibilities from a young age. So maybe they were caring for their brother or sister or a sick parent, doing household duties. Some children serve as translators for their parents if their parents don't speak English. So it's almost like this role reversal that happens very early in life ,so some children under 10, some children in their teens. And so these two situations result in these adults today having trouble reconciling their emotions throughout. Do I care for this parent that I don't like? Do I have to do this? Do I have to have this relationship? And then throughout these children's lives, they have experienced more of their own mental health and their own physical health problems. So it's, it's really a difficult situation.

Virginia:

Yes, it would be. I've known people in situations where they. It was in college when I heard people say they didn't like their parents, they didn't have nurturing parents, and I thought, "Wow, that's amazing." How important is it to understand and admit and come to terms with the fact that you didn't have a loving, nurturing childhood with a caring parent.

Pamela:

For the adult children that I've worked with, it really depends on if they want to continue to have a relationship with that parent, or if they're just done, or if they're having a relationship and they're setting boundaries, and a lot of this comes up with sibling relationships. So a lot of caregivers will complain about their siblings. Maybe one caregiver is helping with a parent that they really don't like, and there's three other siblings and they are not helping out. Well, what happens is the caregiver who is usually involved either has a sense of responsibility or duty. Or maybe they had a better relationship, even though it wasn't great, with that parent. And so the children who don't want to be involved have kind of set that boundary to say, "I didn't have a good relationship with Mom and Dad. I am not getting involved. I'm not helping. It's all on you." So it varies.

Virginia:

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's got to be a very tough situation to try to figure out.

Steve:

I was just going to interrupt for a second. I had a, not a perfect childhood, but I had no siblings, so it was, you know, me or nobody. But what is it you suggest that you have to kind of get your head around and accept? Is it, you know, because I- my son works in this space, and he talks about people who just don't care. They just lead them to society. So what do you have to do as that child to get yourself into a place to do that kind of care?

Pamela:

So I have a lot of children who didn't like their parents, yet they were still caregivers. So like in any relationship in our life, right, you have to accept the person, the parent, as they are, and realize that no matter how much you want them to be, that parent, you know, of your dreams, or the parent that your friends had that was like, really cool and really great, right? Your parent is never going to be that. So it's this acceptance of "This is the parent that I have. I'm going to do 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 one parent or the other, and when the parent that they favored passed away, they just disappeared. They left the family, no more contact at all.

Virginia:

Wow. Do you recommend that these people in these situations, do you recommend they go to therapy or counseling or something to help them kind of work through these issues?

Pamela:

First of all, you have to realize what's happened in your family. So some of this is a generational issue, so your parents' grandparents did this to your parents, and so they're doing it to you, and they may or may not even realize that it's happening. So until you, as the child, grow up and see a pattern or something, it's hard to realize that you want to get yourself out of this pattern and look at something else. And so yes, a lot of children do go to counseling.

Virginia:

And it can help.

Pamela:

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 what all that meant." You don't realize it in the moment, but 20, 30 years later, it becomes crystal clear.

Virginia:

Okay, all right, that makes sense. A person may have had a parent who never gave them approval. They were led to believe they were never good enough no matter what they did. It would seem to me, it would be pretty hard to be a caregiver for a parent who made you feel like you couldn't do anything

Pamela:

You know, it's very interesting. So I have helped right. families where there were children who were in this situation, they felt like they could never do anything right and the parents never complimented them. But on the other hand, their siblings had a very different relationship. So I think it depends on-- so my family, for example, 17 years between the youngest and the oldest, and we had good parents, so I have no complaints, but if you can imagine, the life experience of my brother with my parents was very different than mine. So in a family, there definitely are situations like this, but some children will move out of the house, get jobs, become self sufficient, and it's not an issue. Some children struggle with doing that. And so what happens is they are seeking approval. So they may be the caregiver, and I call these people caregiving martyrs, because they give up everything in their life to the exclusion of, you know, no career, not getting married, no friends, or if they're married, their marriages break up. Everything is to try to gain the approval of this parent, and they never realized that they're never going to get that.

Virginia:

Right.

Steve:

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 she was frustrated because he wasn't providing the care that she thought she should do. But he was so involved believing that he was the instrumental caregiver that he couldn't hear and was at odds with his sister 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 experienced those kind of situations? And what do you recommend?

Pamela:

So there are some situations where a caregiver, a sibling, child, becomes so controlling that they they almost drive away their siblings because they're so controlling. For example, you can come and visit 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. The over controlling caregivers are almost like obsessive about this care relationship, and it places a parent in a very vulnerable situation. So those are very abusive situations where I've seen Adult Protective Services and attorneys and the police have to get involved because family members will report suspected abuse or neglect.

Virginia:

Yeah, when you say adults, we're we are talking, you know, 50s. These are not children taking care of parents. These are grown adults with definite opinions.

Steve:

Correct

Pamela:

Yes

Steve:

Yeah

Virginia:

You have said before that people can feel like they're trapped in caring for a parent who may have taught codependency. Can you explain what that means to us?

Pamela:

So I've had some situations where an adult child has lived in the home of a parent and they're still living there 50 years later, and the parents never really supported that child. They never really say, "Go out and get a job and make friends and do all of these things." And so these adults who are 50-year-old children lack a lot of life skills. They don't know how to get a job. Maybe they went to high school, but they didn't do anything beyond that. They lack social skills, because the only people that they have contact with are their parents, and some of these children may be slightly disabled. So you know, in a sense, the parents really are doing a disservice to their children by making them codependent, and at the point where that relationship changes and that caregiver can't be the caregiver anymore, or the parents die, it really is a difficult situation for that adult child who doesn't realize that they never had the opportunity to create a life.

Virginia:

They don't have confidence to do that.

Pamela:

They don't even have the skills, the life skills sometimes.

Steve:

That's got to be a very difficult situation for both the person with the dementia and also for the caregiver. The caregiver is feeling, "I didn't sign up for this, and I don't know what to do," and at the same time, the parent is saying,"Help," or maybe saying, "Help," or is argumentative and reacting to the fact that this person never developed their own skills themselves. I could see that being really very challenging. Who steps in at that point in time, or is that where a sibling has to step in? And what you described before, what happens?

Pamela:

Sometimes, in many cases, a sibling does have to step in. And in, most of the brothers and sisters that I've worked with, they're very hesitant to quote, "upset the apple cart," but yet, they know that they have a responsibility and a duty to to the parent. So what I say to these children is, you know, "If this was you, if you were the parent with dementia, and you had this child in your house who was trying to 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 do it." It causes a lot of difficulties in families, especially when they have to move that child who's been living in the home out of the home, sell the home, so they can move their parents somewhere else where they can get care. It's almost like, I mean, imagine being 50 years old and having to learn how to cook and take a bus and you're going to school again, and you have to figure out how to figure out how to get a job, and you're 50 years old, you could have done this 30 years earlier. It's such a struggle for these adult children who have been placed in these situations.

Virginia:

Kind of wasn't their fault.

Pamela:

It wasn't their fault, and it's, it's so difficult, so difficult.

Virginia:

What happens when in a family, a parent picks a favorite child or pits one child against a sibling. What are the family dynamics there? And how do you handle that?

Pamela:

It's really, it's a disservice to the children. It happens, though, and again, I go back to these generational habits that are passed down. So maybe the grandparents did that to the parents now, who are doing this to their younger children. What happens is, the children who aren't favorites feel like they have no self-esteem, and they can be depressed. The favorites, though, can feel like their siblings don't like them, because their siblings are probably angry that you get the bicycle, you get to go do this, I don't get to do anything. So there's all this resentment between siblings, but a lot of times, families don't talk about it, and so what happens 20 years later when these parents need care is maybe the favorite is the caregiver, and again, they're angry at their non-favorite siblings for not helping, but they don't realize what emotional state those siblings were in when they were young, and how they felt that they weren't important and whatever they did didn't matter to the parents. They were just checked off the list and put aside. And so these children then don't get along when they're caring for elderly parents, and the children who are helping have no idea how those younger children felt. And at this point, the younger children, you know, who were the unfavored so not going to bring it up. They're just going to let it go. They don't want to talk about it anymore, nor do they want to talk with their siblings.

Virginia:

I imagine sometimes maybe a parent wanted a girl and they had a boy, or they wanted a boy and they had a girl, it just didn't start off well.

Pamela:

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:

When you when you're talking about this whole sibling interaction, what do you recommend to siblings that are in disagreement. You know, they can't come to consensus. Whether they're at odds or they have some of these deeper problems that you're describing, or just the general idea that they're in disagreement, and as a result, nothing's happening, or they're fighting, or whatever. What do you recommend in those situations?

Pamela:

I have had groups of siblings come to my office and talk about what they believe is best for a parent or why they disagree. And the goal is to try to get everybody, nobody is ever always going to agree, but if they can at least agree on some things about who can do something and who can't do something, and how they can participate. So there's, I say, to make a sibling agreement. So put it on paper. There's six kids. This is what I can do. This is what I can't do, and even 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 least everybody's even if they don't agree, they're supporting the plan for the parents.

Steve:

That makes a lot of sense. And I can see that roles would be established then, and that helps kind of differentiate, well, I'm responsible for food, or I'm responsible for taking them to the doctor, or whatever it might be, and, oh, okay, that's my part of the job. So I feel like I'm involved, and it's defined. That helps.

Virginia:

Yes, yes, I've talked to some families where there's somebody whose strength is finances, so they take that portion and somebody else is more nurturing, and they take medical care, whatever. But if everybody has their own role, it

Pamela:

Makes it much easier. can clarify things I would imagine

Virginia:

That leads us into another question for you, what if you have a blended family where there are two parents and then two sets of children with separate and different interests about their inheritances or caring for the parent with dementia?

Pamela:

That happens mostly when what I call in remarriages or separations. So when parents maybe remarry and the children have already been out of the house on their own, then you do have two sets of parents and two sets of children. That kind of goes back to the sibling agreements of we will take care of our parent. You take care of your parent. But if the couple didn't do a premarital agreement or spell out how money was to be used for whose care and either equally or all the care goes to one person. I mean, that's kind of where these children get into huge disagreements, because they're saying, "Well, that mother, who is not our mother, is sick. Dad's spending all the money on her, which is either going to affect Dad's care or our inheritance." So the parents have to really bring these children together, and they should set the stage before they get dementia, to say, "Look, this is the way it's going to be. Each of us, as spouses, are going to get the care that we need. This is how the money's set up. This is who our power of attorneys are." You kind of set the lay of the land if you can, to avoid very litigious family situations when these things happen.

Steve:

You know, I did remarry. I lost my wife, and I remarried, and I was told, encouraged, to do a prenuptial agreement, which from my generation, was like,"What? What are you talking about?" This is something we'll just discuss. And, you know, I got a lot of great advice, and I did it, and I think that it's a necessity if you're going to remarry, because it eliminates these things. My kids weren't thrilled about the fact that, you know, all of this stuff, but everybody knew. Now I have a much better relationship with my wife's children, because it's all clear. In fact, one of the things we agreed upon was I'm living in her house, and so, well, what happens if she passes before I do? Do I have to move out? You know, all of these kinds of things. So in our agreement, there's time in the agreement for me to stay here for a period of time before I have to do anything. So I think that's really important, getting all this stuff decided upon in advance.

Virginia:

Very smart.

Pamela:

It's so wise, so wise.

Virginia:

No it is. And I think sometimes it's just uncomfortable, but it's much better 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 well being and you just cannot be the caregiver for that parent? Is that okay?

Pamela:

For the children that I've worked with, I always say that forgiveness is an individual choice. You honestly don't have to forgive somebody to help them, if you can look beyond all the bad things in the relationship. And again, I've known a lot of children who do this to say, "You know what, my parents were not good. I have a duty 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'm still living through all the trauma of the childhood things that happened. I don't want to do it, but what I will do is I will either pay somebody else to help, or I will pay somebody to create a plan for my parents about how they can go get the care they need without me being involved." So it's definitely okay to say that you can't be the caregiver, because some people should not be caregivers.

Virginia:

Great. It's one of the hardest jobs in the world. It really is. If you decide that you do want to take on the responsibilities of being the caregiver, how important is it to set boundaries? And how do you do that?

Pamela:

Extremely important. I've seen adult children who have done this, and at first they help as they can, and eventually there's a point where they just hit a wall and they're like, "Oh my gosh, I can't do this anymore." And they realize that they have to start setting boundaries. So it may be call my mom or dad once a week, and I'll visit this much. They limit the amount of contact, because the contact with the parent is just horrible. And you know, if a parent has dementia, that's a whole different thing, because then is there a power of attorney? So is one of these children power of attorney? They do have a legal responsibility to be involved. They can't really say, I'm not going to do this. If they accepted that responsibility, they have to do it. And then the family complications come in. So you're caring for a parent with dementia who you don't like, and you're married, and your spouse is saying, I need more time with you. I realize you're spending this time with your parents. So then you kind of have to choose who you're going to spend your time with, who's the most important relationship, and not to say that the parents are not. But I believe that people who are married should stick to their marital relationships and their duties to themselves and their children, even over and above a parent, because a parent's care can be arranged through Medicaid programs and other things. It doesn't always have to be that child doing it.

Virginia:

Okay, okay

Steve:

Yeah, I think you raise a really good point. I mean, you have your own life, and you have to fit in this caregiving role, but it should not damage or eliminate your role as a parent or a spouse or whatever it might be. And you lose that part of

Pamela:

It happens well, and the children have to be the ones to your life, you can't give that up. Of course, we see occasionally this marriage between two people, and they become so, so codependent. I'm talking about the parents now that once one goes the other one goes immediately after, because they don't know what to do without the other one, which is sad, but it happens. break these cycles of the expectations of the parents. Otherwise, it just gets passed down from generation to generation to generation.

Steve:

So a little transparency is a good idea, and a little conversation is even more important.

Pamela:

Conversation is extremely important, even if it's extremely uncomfortable.

Virginia:

And the sooner, the better, right? Early as possible, I know it's hard. It really is the smart thing to do.

Steve:

I don't know if you've experienced this, but when I was putting together the paperwork in terms of my first wife's illness, and just making sure everything was in order, and having conversations with my children about the paperwork and taking them through it, was difficult because it brought up the idea that their loved one, mother, or even in my case, I was going to pass away eventually. And so it was challenging. What would you recommend to some of the adult children who might be listening to say that I didn't go to college, that there's no class for this? But in reality, this is something that you need to expect and figure out ways to embrace.

Pamela:

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 illness and death may be coming. It's never easy to have these conversations, but it's important to your point. You've got to be able to talk about it with your children, and maybe you set the stage to say, "I really want to talk to you about something very uncomfortable. Can we schedule time? These are the three things that I want to talk about," so that they're not coming into a conversation thinking it's going to be something else and it's totally something else, so kind of like fair warning about what we need to talk about and the importance of why we need to talk about it.

Steve:

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 a business discussion, whereas with me, it was more personal. I don't know if that's a good suggestion or not, but it worked well in our situation.

Pamela:

It does help if you can have an independent party do that, and sometimes, in some situations, depending on the family assets, money, it's good to have a witness, and it's actually good to videotape the conversations, because I've been in some knockdown, drag out, will contests where parents were very clear about what they wanted, and the children were fighting over it. These are just tough discussions to have, and the more that you can do them out in the open and be transparent and again, videotape them if you need to, the better.

Virginia:

Are you ever in a discussion with the adult children and the parents, where somebody says "You are a lousy parent, you didn't take care of us."` I mean, does that does that occur? Do they just try not to bring that up?

Pamela:

In meetings where the parents and the children have been present, usually, I speak to both parties before we have the meeting, so I kind of know what's going on in the background, and I really do suggest not going there. I mean, while that may be the way that you feel, that's better on a one-to-one conversation instead of in a group conversation, and then, if you're going to have a one-to-one conversation, what do you really want from that? Do you just -- are you trying to get the parent to acknowledge that they were a bad parent? And what difference is that going to make at this point in life, if a parent has dementia, they can't change, they probably don't even remember that they were a bad parent.

Virginia:

So true. Before we wrap up, do you have any other questions for Pamela, Steve?

Steve:

No, I just like to say thank you again for appearing here, but thank you for what you do for others. I think that sometimes we don't always get that little, maybe you get enough, but I think that you're doing special work. I would even say you're following the Lord's calling.

Virginia:

I agree.

Steve:

So well done, Pamela.

Pamela:

Thank you. I appreciate it. Well, and thank you for sharing your story about your premarital discussion and all of that, because I think people do need to hear that. You know, while people didn't do that years ago, it's really something that it's okay to do.

Virginia:

Yes, that is so true. And you know, with you now, this is the second podcast we've talked about some really difficult topics, but you always seem to give us such good information and good advice, and we do appreciate it.

Pamela:

I've been blessed to be able to help a lot of people to have the experience to do this.

Virginia:

Must be fulfilling.

Pamela:

It is.

Virginia:

Yeah, Steve's right. Again, Pamela's website is pameladwilson.com and her book is called "The Caregiving Trap: Solutions for Life's Unexpected Changes," and we'll put the links to all of her resources in our show notes. And to our listeners, thank you again for tuning in today and join us again soon for another episode on Spotlight on Care.

Steve:

Spotlight on Care is produced by the University of California, Irvine Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys, and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu.

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Steve O'Leary

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Virginia Naeve

Co-host