Spotlight on Care: Alzheimer's Caregiving

Caring for Difficult Parents with Pamela D. Wilson

• UCI MIND • Season 1 • Episode 42

Share episode

Virginia and Steve are joined by Pamela D. Wilson, MS, BS/BA, NCG, CSA.– an international resource for caregivers with over two decades of experience in aging and caregiving– known for her consultations, advocacy, and her book, "The Caregiving Trap: Solutions for Life's Unexpected Changes," as well as her own podcast called “The Caring Generation.” Together, they discuss the challenges of caregiving for parents with dementia, where Pamela delves into common issues such as resistance to advice, navigating difficult conversations, and managing complex family dynamics. She also emphasizes the importance of involving parents in planning, setting boundaries to maintain emotional well-being, and understanding the reasons behind a parent's unwillingness to cooperate. Pamela’s links to her social media and programs are provided below: 

Social Media

Website, Consultations, Free Online Programs, Speaking, & Podcast


35th Annual Southern California Alzheimer's Disease Research Conference
Join UCI MIND, Alzheimer’s Orange County, and Alzheimer’s Association for the 35th Annual Southern California Alzheimer’s Disease Research Conference. This year’s conference will highlight the incredible advances being made in the diagnosis, treatment and care for people with dementia. 
 
For more information: https://conference.mind.uci.edu/

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. We are so lucky to have a caregiving expert with us today to talk about caring for a difficult parent who has Alzheimer's or other dementia. But before I introduce our guest, my wonderful co host, Mr. Steve O'Leary, would like to mention some information about our annual conference regarding Alzheimer's disease. So Steve, let everybody know what's going on.

Steve:

Yeah thanks, Virginia. Please join UCI MIND for the 35th annual Southern California Alzheimer's Disease Research Conference that will be held on Friday, September 6, at the Hilton near Orange County Airport. This year, the conference will be focused on advances in dementia care. And we'll highlight the latest breakthroughs and advances in the diagnosis, treatment and care for people with dementia. Spotlight on Care, Virginia and I will be there at this year's conference. So register and come by and say hi, we'd love to meet you in person. If you don't attend in person, please join us virtually on Zoom and indicate that on your signup. Thanks so much for considering being a part of the conference. Back to you, Virginia.

Virginia:

We'll put that link in the show notes so it's easy to find information about that. All right. So our guest today is 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, and has a website with information that every caregiver would find helpful, called pameladwilson.com. She has written a wonderful book called

"The Caregiving Trap:

Solutions for Life's Unexpected Changes." Along with her book and website, she has a podcast radio show called 'The Caring Generation', many social media platforms, and even has hundreds of helpful videos on her YouTube channel. We will include the links to these resources in our show notes. So welcome, Pamela, we're glad you could join us.

Pamela:

Thank you for that very gracious welcome.

Virginia:

Well, if I really read your bio, it would take up all the time we have for podcasting. So I did the best I could to chop it down.

Pamela:

You did great.

Virginia:

Well, let's start today by having you tell us a little about yourself, and how you became such an expert on caregiving.

Pamela:

You know, I had an interest in helping people, older adults from a very young age, I can't explain why. I think it was because I spent so much time around older people in my family and they doted on me, and they were so kind to me. So early in my career, I worked for corporations and did marketing and sales things. And then life started to happen. My oldest sister was killed in a car accident, my parents died, my brother died. And you know, earlier in life, I had a social work scholarship that I didn't take. And I thought why didn't I do that helping people thing, right? So changed course, and started a company back when these companies didn't even exist, right? So going into the homes of elderly to take care of the elderly and the disabled. And then that transitioned into a care management company and a professional fiduciary company, which really is where the bulk of my experience comes from. So I was a court appointed guardian for people with Alzheimer's or dementia or cognitive problems, a trustee, a medical and financial power of attorney, personal rep of the estate. And so that gave me such an amazing experience that is just so rare, that I'm able to help people because I've lived their experiences. I've lived their lives through helping all of these clients over the years. And through my family experience.

Virginia:

You've really done it all. Well, I know you're going to be helpful today to a lot of people, even caregivers in general, not necessarily caregiving for dementia, but caregiving in general I think is going to touch on a lot of these topics. So let's start today by asking you, it seems to me that a lot of parents do not like taking advice from their children. What is that all about? And how, what do you suggest people do when they have a difficult parent who doesn't want to take advice from a child? Right.

Pamela:

Well, so just to give some context, it depends on what So there's a number of issues that could be going on the difficulty is. Is it that a parent didn't ask for advice, and the children are giving their advice? So like unsolicited advice, or is difficult that children are trying to help parents and parents are saying, "No, I don't want to do that, or you don't know what you're talking about." So there can be a number of reasons. One, the obvious is, when children see their parents as being difficult. And the parents didn't ask for the advice. The second part is that caregivers, who are not the age of their parents, could have a real gap in understanding what the parents are going through. So they may be offering advice. And the parents may be thinking, this doesn't relate at all to my situation. It's kind of like being a caregiver and having non caregivers talk to you. Right? And they're like, Oh, that's not that's easy. What do you sweat? And about? Why is it so hard? It should be you know, what do you what do you feel frustrated about? This is easy, right? So because caregivers have not been in the experience of their parents, parents may not want to take their advice, because parents are saying, You don't know what you're talking about. they're like, well, the kids have no idea what we're going through, and they're not listening. Right? I'm not going to listen to you. All of that comes into play.

Virginia:

A lot of times I don't think the parent knows yet that they need help, especially if dementia is involved, of course.

Pamela:

Oh, yes. Dementia takes all this off the table, because it depends on how, you know, the stage of the dementia. If somebody's very early in the process, they can understand that they're going to need help. But if that if those conversations didn't happen early on, and there was no planning, or if it's, you know, somebody has dementia, and they're well into the diagnosis before they're diagnosed, that causes all kinds of problems, too.

Virginia:

Yes, exactly. What are common caregiving challenges? I mean, is it the parents attitude? Is it the child who may be 55 years old? Is it attitude? What are some strategies for common caregiving challenges?

Pamela:

Sometimes it's just misaligned goals. And I'll use my family as an example. So the children right got together to talk about care for the parents. We didn't include our parents, right? Our plan was, well, Dad's gonna die first, we'll just move Mom around, she can live with us, and we'll take care of her. Well, that's not at all what happened. Because we didn't have a conversation with our parents about what they wanted. So part of it is if everybody doesn't sit down and have a conversation about Well, Mom or Dad, what happens when you need care? Or what kind of care do you want the children kind of go off on their own plan? And the parents are like, totally somewhere else?

Virginia:

Exactly. And it's not an easy conversation to have is it?

Pamela:

It's not. I have been in situations where parents say,"Oh, my gosh, I wish my kids would listen, you know, they need to hear this." And then I've been in situations where kids are saying, "We're trying to talk to the parents and our parents won't listen." So everybody on both sides has to kind of be ready to have these conversations.

Steve:

So it's not something Pamela that, you know, as a strategy, you would recommend to both, you know, dementia patients early on, you know, MCI kind of situation, as well as the children; Hey, have a conversation, as this all gets started, so that everybody gets hopefully on a similar page in terms of what the desires of the parents are, like, you know, I want to live in my house as long as we can. We know that's one of the issues. Is that what you're saying? Like early conversations.

Pamela:

Yes, have the conversation early, early, even before you have any health problems, or you get sick? You know, it could be the kid saying, "Gosh, Mom or Dad, you know, we're all young, we're all healthy. But what happens if? What happens if you get dementia? What happens if you get Alzheimer's? What happens if you get sick? What do you want? Because we're thinking about that for ourselves and our kids."

Virginia:

Okay. That's an easier, maybe it's an easier angle.

Pamela:

It's so much easier when there are no health problems because you're not emotionally distraught, right? You're not worried about what's going to happen tomorrow.

Virginia:

Right and no one likes to think about, I don't like to think about being in a care home.

Pamela:

Or getting old or getting sick

Virginia:

Or getting old!

Pamela:

Or die right? Nobody wants to talk about that.

Virginia:

It's true. No, very, very, very true. Speaking to a difficult parent, is there a way to make them listen, tone of voice or body language? How do those things come in?

Pamela:

So a couple of things come into play. Getting someone to listen to you means that you listen to them first. Right? So it's about asking questions saying: "Mom or Dad. Hey, how are you today? What's going on? Do you have any concerns? Are there things I can help you with?" Now obviously, if you're caring for somebody with dementia, they may not be able to answer those questions. But my belief about people with dementia is they kind of have horse sense. Horses know if you're upset. They know if you have a smile on your face. They know if you're like gritting your teeth or your holding your fist, I mean, any kind of body language, anything that is out of the norm can be very upsetting for someone with dementia who that's all they can see. They can't really understand what you're saying, but they sure can see your body language.

Virginia:

Yes, and they react to it.

Pamela:

Yes.

Virginia:

It's not easy to look how you want to look. But you're approaching a difficult topic. You can tense up, and it's all over your face, that there's something that's not going to be pleasant to talk about.

Pamela:

It is. And that's why it's so important to prepare, you've got to have, if you're going to have a difficult conversation, you want to have it when you're going to be in the best mood that you can be. You want to plan for it. And you always want to have a plan B. So if this conversation doesn't go well, this is what I'm going to do. I'm gonna say: "Hey, let's just come back to this. We'll talk about it in a couple of days." You got to have an exit strategy for when it doesn't go the way you think it's gonna go.

Virginia:

Okay, maybe it's something as simple as, let's just stop and have a bowl of ice cream.

Pamela:

Or gosh, you know what, there's a TV show here. Let's go watch that.

Virginia:

Right.

Pamela:

Just kind of redirect the conversation.

Virginia:

Redirect. That's a big one with dementia. Definitely.

Steve:

Pamela, do you, I've heard people who are caregivers kind of reiterate all the issues, like "Well, you know, Mom, or Dad, you've got this. This is not right. This is not right. This is not right. This is not right." And I've always counseled that you don't start with a litany, you just start with your concern, if it's personal: "Hey, I love you, and I'm just worried about your care. And let's talk about your worries," and then sit back and listen. And I think that's what you're also saying, right?

Pamela:

It's to ask more questions and to give less observation. So none of us like to be told right that we're, you know, not bathing, not eating not following doctor's advice. That's like nagging right? So it could be something like: "Hey, Mom or Dad, I noticed that you you seem to be losing weight. Is there something going on?" Or "I noticed that this happened? Tell me about that" and just leave it. S`o instead of being naggy

or judgmental, say:

"Hey, what's this about? I'm just curious?" and see what they say.

Virginia:

It's not confrontational.

Pamela:

Not at all. Because that does not work. As most caregivers know. I mean, it doesn't it doesn't work in normal life, right? It doesn't work with our friends or, or at work or anywhere.

Virginia:

That is so true. I've noticed while listening to a lot of your podcast that you talk about boundaries a lot. What how, why, when? How do you set them? How do you how do you know when to set a boundary for your loved one, yourself and your siblings even?

Pamela:

So a boundary comes up when you kind of feel uncomfortable about something right? It's like, that doesn't make me feel good, or that's not right. So it could be as simple as you know, your parents expect you to show up every Saturday, right? And you've kind of done it for a while, but you're dreading it and you're starting to be resentful, and you don't like your parents anymore, right? That's kind of pushing your boundaries. And so you may say: "You know, Mom or Dad, I know I agreed to do this, or I've been doing this, but I'm going to change it. And it's going to be every other week, right? So that I can have a weekend to myself." So our boundaries get pushed when you know, things trigger us or we feel uncomfortable about something or we keep saying yes, yes, yes. And we really want to say no, because we feel guilty. So we have to realize what our boundaries are and then look at what can I realistically do because caregivers think they can do everything and they have to do everything. And the problem is, and this this is kind of excluding parents with dementia or Alzheimer's right? The more that you do to help somebody, the more dependent you make them on you. And so then caregivers are taking over their parents lives. And yet they're complaining that they have so much work to do when they didn't ask mom or dad, if they could do this. They just took it over.

Virginia:

Okay, as the dementia progresses, a lot of times I think caregivers don't really have much of a choice. Although what you're saying is, you got to really think seriously about this hiring help to help or even going into assisted living.

Pamela:

Yes. And in a perfect world. You know, if these discussions happened before the dementia, you would have a plan. But in the event that you don't you really have to look at you know, what is your health as the caregiver? Do you have a family? Are you married? Do you have children? Are you working? Do you have all these things to do? And how is this caregiving affecting you? So that you can kind of look forward and say, you know, when this happens when mom or dad need this much help, we do need to look at a care community or bringing caregivers into the home or other options for care because I can't do it all.

Virginia:

Right. We talked before about finding out what the parents financial situation is just in case they do need to eventually hire help or do a placement in a community because it is not inexpensive.

Pamela:

No, it's very expensive. And so in the, in a perfect world in the planning stages when you're having these conversations about money and health, I always recommend, especially if there's an Alzheimer's or dementia diagnosis to investigate Medicaid. In California, it's It's true, it seems like it shouldn't be that much. But it Medical. It's different different names in different states, right. It's a state by state program, but it's a program for elderly who are low income and need care. So investigate that long before you need it so that you know, what documents you need to apply, what the qualifications are. You know, in some cases, if parents were veterans in wartime service, there may be some benefits from the VA, investigate all sources of ways to pay for that care, because it's very expensive, especially for people with Alzheimer's or dementia. is. What do you do if your parent really refuses help? And you know, they need it. So two scenarios, parent without Alzheimer's or dementia, parents have a right, if they are cognitively able, everybody has the right to say no, everybody has the right to choose. Now, that doesn't mean that they're making good decisions. We all have the right to make bad decisions as we all have done at some point in our life. Okay? So sometimes adult children just have to be okay with you know what, Mom or Dad disagree. They're refusing help. But then you say: "Mom, or Dad, I'd really love to help you with this. But you're refusing. So I'm going to back off and let you do this yourself." And then you kind of wait to see the consequences, right? And let your parents live with the consequences and see if at that point, they're going to ask for help. Now, if somebody has Alzheimer's or dementia, I'm hoping that by this time, you are the medical power of attorney, or the financial power of attorney or the guardian. Because at that point, you have a legal responsibility and a duty to get them the help they need, whether they want it or not.

Virginia:

Is that right?

Pamela:

Yes.

Virginia:

Okay.

Pamela:

Yes. I mean, that's what you sign up for a lot of people. And I've two courses on my website about power of attorney and guardianship people accept these responsibilities, and they don't understand their legal duty. You cannot let a parent for example, stay at home, if they're wandering out of the house at 2am. You know, every night and the neighbors down the street are finding them right. It's not a safe situation, you have to do something, you either have to bring somebody in to stay with them all night, look for a care community, find options, it's your legal responsibility to keep them safe, and healthy, and well. And that's hard for children. That's why I used to be appointed by families, because they didn't want to be the bad guys. They didn't want to be the one who made Mom move into the assisted living or into the nursing home or, you know, who told Mom or Dad, they had to do this? Right? It's hard when you're the children.

Steve:

That's an interesting point, sometimes a third party person can act and be helpful in terms of the debate between children and their parents, I found that the doctor was always the place that I went with my wife. And I would assume it's the same with with children, where you say, well, you know, this is what we heard, even if they don't remember the fact that you're repeating it makes it easier for someone else to accept if it isn't confrontational from person to person.

Pamela:

Well, and sometimes that people are at a point where they can't even understand what you're explaining, right? So honestly, there were situations where I had clients who were living in their homes, and I had to move them. And I told them once and that was it. I never told them again, and on moving day, we went to the grocery store, and we ended up somewhere else. Wow, because they cannot comprehend. And all you're doing is stressing them out by saying we have to do this. They just don't understand. There's a point where you just make it happen in the kindest, most possible way that you can.

Virginia:

That is so interesting. I hadn't thought about it from the responsibility obligation part. I thought of it as a privilege. When I had financial power of attorney for my Mom, I thought of it as a privilege that I had to oversee to make sure things were okay. I didn't really think I had a duty. But you do.

Pamela:

Oh, yes, you could end up in court at any time. That was that was the one thing about being a fiduciary. It was full transparency. I mean, family members could ask why I was doing something. The judge could say: "Pamela, why did you make that decision?" You have to make good decisions based on the information that you have and what the person would have wanted if they could have told you that before the diagnosis.

Steve:

Two questions. One, what about a multiple children in the discussion? And the second part of the question is what happens if there's a disagreement? If a disagreement occurs, and you're having a meeting with your parents, and all of a sudden there's a disagreement between two or three children about what it is the parent should do? What's your advice?

Pamela:

Ha you never go into you never go into a meeting with your parents unless you've had a separate meeting with your siblings.

Virginia:

Oh, good point. And why is that important to someone with dementia?

Pamela:

The advice is you have to have a united front. Now not everybody's always going to disagree. So the question is, Because it can be so confusing. You don't it's kind of like the can you come to some kind of consensus. Okay, if not, then who is that legally responsible party? Is it one of the children? Because you may be the child who has to say, look, you know, based on all of these facts, not emotions, this is the emotional aspect of right? So you have kids showing up and the choice I'm going to make. And I understand you may disagree with me. But can you support this? So what you don't want is you don't want what I call triangulation, right? You know, one sister person with Alzheimer's or dementia can tell somebody's saying, Oh, Mom or Dad, you know, Sherry's just horrible because she thinks this. You want to present as much of a united front as you can, even if people disagree. upset and they're uncomfortable, right? You want to make your parent as comfortable as possible, and their relationships as pleasant as possible. You don't want to bring your personal problems into that relationship. It doesn't belong there. But it's hard for family members to do. That's why the untied front is helpful, because it makes it easier on that person. I mean, let's face it, do you want to make things harder for your parent because of your emotional issues? Or do you want to make life easier for your parents? You have a choice to make.

Steve:

What about multiple people in the conversation? Is that a good idea or a bad idea?

Pamela:

It depends on the level of progression of the memory loss. If a parent can get three words at the beginning of the sentence, and by the time you get to the end, they can't remember, you don't even have the conversation. So it really is case by case. How much can my parent understand and how much can they participate? Because you don't want to overwhelm them either?

Steve:

No, I was thinking I was referring. So let's say there's four kids? Do all four kids show up for the meeting? Or is it one person? And what's the pros and cons of one kid being there? And then all of a sudden, the parent goes, well, I'm going to talk to Joey, instead of you Susie, or all four the kids are there and it is united front, I can see pros and cons of both approaches.

Pamela:

So again, it depends on each situation. So when I talk to children about how to approach parents, it's like, who does the parent have the best relationship with? Is there one children out of four that should approach the parent or just a parent prefer to have all four of them there? So you have to look at it case by case. And again, what you're trying to do is give the parent confidence and comfort that everything is going to be okay. What's the best way to do that?

Steve:

That sounds great.

Virginia:

I remember when we called a family conference together with my mom who had Alzheimer's to tell her that she shouldn't drive. And it felt a little like we were ganging up on her. But we ended up convincing her that it was the best idea. But the next day, she said: "Oh, well, it's time for me to go home where are my car keys?"

Pamela:

Driving is a hard one. That's a very hard one.

Virginia:

Yeah, it's a hard one. You know, Steve, ran a support group for men. And my next question has to do with the value of support groups relating to, does it help with caregiver stress and caregiver guilt? What are your thoughts about having the caregiver join a support group?

Pamela:

I think support groups are very good. Now I've had some caregivers get into the wrong groups. So it depends on what the caregiver wants to get out of the group. One caregiver

said:

"Pamela, I joined this group and it was just a it was negative. It was a complaint session, there were no solutions given, there was no positivity. It was miserable." Right. Okay. So it depends on what you want to get from a group. Do you want positivity? Do you want people to support you? Do you want suggestions? So kind of like, you know, parents not wanting children's advice. I run a support group too. And my

question is always:

Are you venting or do you want solutions? What do you want so that we can give you what you want?

Steve:

Yeah, my experiences, all support groups have both of those moments, there are the moments of venting and you just let someone sometimes it even involves tears. They just have to get it off their chest. And then you turn around into Okay, well, where do we go from here? What do you think we should do?

And we also talked about:

Don't tell, just relate. You know, the idea is, what's my story rather than, "Well you shouldn't do that, Steve" this and this and this and this and reasons rather

than:

"Well, here's what I learned." It's all in the approach.

Pamela:

It's very much in the approach, because because every, you know, like we talked, every situation is different. And it's like, so what is it like? What is it like to be you today? Is it a good day or a bad day?

Virginia:

Yeah, very good. We're just about ready to start wrapping up here. But I want to ask you, what do you do if you just decide you can't be the caregiver any longer?

Pamela:

So again, I'm gonna go back to the planning, right? If you've had the planning discussions, you might know about your parents finances and all of that, but if you do get to the point and you haven't had these discussions, I'm hoping you have. Again, it kind of depends on are you the power of attorney or not? Because, you know, if there is no power of attorney, if there is no guardianship, and your parent has dementia, and you can't do it, you're going to have to find a way to get some kind of legal permission to be able to make things happen. Right? If your parents still is at a point where they can decide they're still managing things, then it's a conversation saying, you know, Mom, or Dad, I can't do this anymore. I'm here, let's make a plan to have care come in, or have you go somewhere, you know, what are your preferences? What do you want? But again, it depends on the stage of the memory loss, which of those conversations you're having and what you're able to do. But it's okay to say that you can't do it anymore, because some caregivers, they don't give up their jobs. I've seen caregivers get divorced because of caregiving issues, or their kids are suffering in school. You know, you never want to, I hate to say the word destroy, but destroy your family life. Because you're a caregiver for a parent, and that is just taken over your life. Which sometimes it does.

Virginia:

I imagine it does.

Pamela:

It is okay to say no.

Virginia:

Yeah, it's the guilt factor that probably comes in and people just feel too guilty saying they can't do it. But it's wrecking their own family and their own peace of mind.

Pamela:

And it may not even be good for the parent. Because if you're that frustrated and angry, how are you coming off to your parent? Are you a good caregiver anymore?

Steve:

Very good point.

Virginia:

Exactly.

Pamela:

You may not be the best caregiver anymore.

Steve:

Yeah, I think I hear you saying and I'd be interested to get your comment. It's about acting sooner rather than later, this whole process of being a caregiver, waiting for the proper moment. I mean, certainly, the timing is important. But sometimes as a caregiver, you're like: "Well, gee, I don't, I don't want to make them uncomfortable. I don't want to deal with it. It's difficult. They're not happy. I'm going to just wait for another time." And all of a sudden, it doesn't get any easier being a caregiver. So the idea of planning and acting early is really critical.

Pamela:

And it's critical for the caregiver too, because as you all know, the caregivers many times have health issues because of caregiving, right? They're stressed, they have diagnosis. It's kind of like, whatever you're doing for a parent you should be doing for yourself, and respect to planning because you never know what tomorrow is gonna bring.

Virginia:

It's a tough job. Very tough job. Do you have any other comments or questions, Steve, before we wrap this one up?

Steve:

Well, I think this has been terrific. From my perspective, I learned some things, which is always great about these calls is, you know, it's there's so much to have and experienced, you know, that can be shared, and you obviously have a lot and I can tell from your tone in your approach that it's, this is a calling for you. This isn't a job.

Pamela:

No, it's not. It's it's been a long, almost 25 years now that I've been doing this.

Virginia:

Yeah, I think that's a really good way to describe it, Steve. It's a calling for Pamela.

Pamela:

Yeah, it is.

Virginia:

It really is. Well, thank you so much for joining us today and giving us so much good and useful information on caring for a loved one who isn't easy to care for.

Pamela:

Thank you for the opportunity to be here.

Virginia:

Sure. Again, Pamela's website is pameladwilson.com. And her book is called "The Caregiving Trap: Solutions for Life's Unexpected Changes," and we will be sure to put the links to those resources in our show notes today. And to our listeners. Thank you for tuning in and join us again soon for another episode of 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

People on this episode

Head Shot

Steve O'Leary

Co-host
Head Shot

Virginia Naeve

Co-host