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When Aging Parents Need Help: Family Caregiving Roles & Impacts

Episode #52March 23, 2021

When older adults begin to experience physical or mental health changes, like with dementia disorders, it can be difficult to know the steps to take to be helpful.

It can be particularly difficult for family caregivers to know how to balance independence with concerns for safety.

And, to top it off, you may worry that insisting that your loved one see a doctor may rupture your relationship with them, push them away, or undermine their rights and dignity.

In situations like these, it’s essential that we have experts to guide us, people like, Dr. Sara Qualls, Clinical Geropsychologist and Kraemer Family Professor of Aging Studies at the University of Colorado at Colorado Springs (UCCS).

, Dr. Qualls discusses:

  • Common role transitions in older families
  • Tips for balancing safety and autonomy
  • Strategies for having tough conversations with aging loved ones while preserving dignity and respect
  • Steps to take when aging parents need help, but are refusing care.

Here’s a peek into my interview with Dr. Qualls:

  • [10:04] What are some of the common role transitions in older families?
  • [13:34] Worried about your aging parent’s safety or capacity to make decisions? Steps to take when your aging parent needs help.
  • [20:11] Feeling guilty about caregiving decisions? How to repair ruptures in the relationship with your older loved one.
  • [22:59] Learn how to balance your older loved one’s safety with autonomy
  • [27:04] Every family is unique and will make changes in line with their patterns as a family. Learn more here.
  • [33:12] Why you may want to reconsider your use of the term, “parenting your parents”
  • [37:51] How to invite your older loved one back into the relationship while you’re caring for them?
  • [45:27] Important considerations for families with a history of toxic or painful relationships.
  • [47:55] Interested in caregiver family therapy? Tips for finding a family therapist.

Watch this brief video clip of the interview where Dr. Qualls shares the steps to take if you’re worried about an aging parent (listen to the full episode on the podcast):

About Dr. Sara Qualls

Dr. Sara Qualls is a Kraemer Family Professor of Aging Studies & Interim Director of Clinical Training at the University of Colorado at Colorado Springs (UCCS).

Since 1984, Dr. Qualls has been a member of the Psychology faculty. She served as Department Chair (1993-2000), Director of Clinical Training (1987-96; 2004-07) and Director of the UCCS Aging Center (2016-2018). She teaches primarily at the graduate level, maintains a lab of research mentees, and conducts research on the caregiver program within the department’s training clinic, the UCCS Aging Center. Other campus roles include Director of the Gerontology Center, and Faculty Director of the Lane Center for Academic Health Sciences. Dr. Qualls is currently serving as the Interim Director of Clinical Training.

Sara Qualls’ book, Caregiver Family Therapy

Resources mentioned in this interview

  • Find your local Area Agency on Aging here

Dr. Sara Qualls 0:00
Sometimes families downplay, "Well, you know, yeah, she has some serious memory problems. But basically she's doing okay. Well, she just drives in the neighborhood." You know, they have all kinds of ways of downplaying the seriousness of what they're seeing. And be partly because they are afraid that the elder won't respond to them. I sometimes use the example of families that if you left here today, and you went to your loved ones home, and she was on the floor, and she's coming in and out of consciousness, when she's conscious, she says, "Do not call 911." And then she goes back out of consciousness, what would you do? And everyone says, "Well, I would call 911." And I remind them that they did that, because they saw it as an emergency. And I want to tell you that what you're describing for me, is someone who probably no longer can call 911 independently, and explain what's going on. And if they can't, then in my mind, that's an emergency about to happen. So you, you do need to step in, and it's okay now, to be a good wife, or husband, or son or daughter in a new way. To Be respectful, to be kind, and to be firm. This is what needs to happen. I know you don't agree. It's what needs to happen. And I'm going to make it happen.

Dr. Regina Koepp 1:27
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the psychology of aging podcast to answer some of the most common questions I get about aging, questions about mental health and wellness, changes in the brain like with dementia, relationships, and sex, caregiving, and even end of life. Like I say in my therapy group, no topic is off topic, we just have to have a healthy way of talking about it. So if you're an older adult, or caring for one, you're in the right place. Let's get started.

Celebrating one year of the Psychology of Aging Podcast

Dr. Regina Koepp 2:09
This is the 52nd episode of the Psychology of Aging podcast. That means I've been doing this podcast for one year, each week for one year, I come to you with an episode on mental health and ageing, caregiving, Alzheimer's disease and dementia disorders, how to prevent dementia disorders, Diversity, Equity and Inclusion among older adults, and so many other topics. I want to thank you for showing up with me for listening each week for doing your part to raise awareness around Mental Health and Aging. There are many of you who are caregivers. There are many of you who are graduate students in gerontology and learning about Mental Health and Aging and the experience of aging in the United States. I have listeners in Australia and Ireland and England, even India. So thank you, thank you for joining me each week in my mission to increase awareness around Mental Health and Aging. And what's very exciting, is in the next several months, this year, I am going to be doing my part to increase access to mental health care. I'm not ready to spill all the details on that yet, but I am working hard on it. And I'm so excited to share what's in store with you. So thank you. Thank you for being here. And thank you for joining me in the mission to promote mental health for older adults in their families.

About today's guest, Dr. Sara Qualls

Okay, let's jump into the podcast episode for today. So today you are in for a treat. Today I interviewed Dr. Sarah Qualls, who is a Kraemer family professor of aging studies and the interim director of clinical training at the University of Colorado at Colorado Springs, where she has been for the majority of her academic career. I'm not going to go into all of the details about her career because we'd be here all day. She is quite impressive, though she does have a book that I'll link to in the show notes called caregiver family therapy. And this is one of the greatest books that I have used in providing therapy to older adults in their families. So today on the podcast, Dr. Sarah Qualls will will talk about role transitions and changes when health care issues mental health issues dementia issues affect the older family. She'll talk about how families change and older adulthood and steps to take if you're concerned about In older adults safety, this is one of the most common questions I get. And Dr. Qualls really walks us through what to do if you're concerned about an older adult safety and they're refusing to go to the doctor. And then further along in the caregivers journey, Dr. Qualls will share ways to invite the care recipient into the caregiving relationship. And she talks about her own experience with that with her own mom. So like I said, you're in for a treat. Let's jump in to the interview with Dr. Sarah quolls. Dr. Thera calls. Thank you so much for joining me on the psychology of aging podcast today. Will you tell us a little bit about who you are and what you do?

Dr. Sara Qualls 5:46
Sure, thank you for inviting me. I am a clinical geopsychologist, I can say that now it didn't exist when I came into the field. But I'm a clinical psychologist who specializes in work with older adults. And I have been for my whole career at the University of Colorado, Colorado Springs, where I am a Kramer family professor of aging studies and a professor of psychology. And I direct the gerontology center there. So what that all means is that I spend my time training students in a doctoral program to become Jarrow, psychologists, and innovating around new service approaches and studying those trying to do research about those to figure out what works and why it works, and also then to reach out in the community and try to apply what we've done.

Dr. Regina Koepp 6:38
When you say reach out in the community, what does that entail?

Dr. Sara Qualls 6:43
We've built our program around community partnerships. So our students can engage in integrated care, integrating mental health into social services, into housing, and into primary care, and end of life care, actually, so we have students in a variety of settings. And each of those settings gives us an opportunity to test out our ideas and to build out ideas that actually apply appropriately to that setting.

Dr. Regina Koepp 7:14
And that such a wide range of settings from medical to social, to housing, end of life care...

Dr. Sara Qualls 7:24
And add legal to that, because our most recent project, we were doing an integrated project with the Adult Protective Services, around capacity evaluations, and integrating that with social services and the evaluation process. So trying to figure out how to better meet the need of adult protective services in the community.

Dr. Regina Koepp 7:46
Part of what you do also is with family therapy with older families, can you speak a little bit about that?

Dr. Sara Qualls 7:52
Yes, I've had an interest in my career began actually started in graduate school with how families change in later life. And that interest led me into well, under what conditions do they need help with those transitions. And I came into the field in the early 80s, caregiving was starting to be a great interest. And in many ways, caregiving sort of became the primary lens through which people looked at family members who were providing services. And the field really adopted a stress a coping framework, which has been very useful to help us think about the stresses that come with providing care to the senior I began with a different lens, my lens was how our families adapting and under what conditions are they changing and what creates change. And it turns out that in later life, families really have a reasonably smooth set of transitions through empty nest and retirement. I mean, there's work to be done, but most people do fine with it. The challenge that really is hardest for families is when there are major healthcare challenges. And through my family lens, that particular way of seeing the world, I began to think of those challenges as often including a component that had to do with family structure and functioning. So families had been functioning in a particular way for a long time. And now that way, wasn't working. When there was an illness, with an illness, and often with a change in roles. So the person who becomes ill ends up being having to either adapt the way they've done the roles or unable to do those roles, especially if it's a cognitive impairment. Yeah. So that led me into thinking about what do we need to do to help families make those role transitions that then empower them To effectively provide the care that's needed.

What are some of the common role transitions in older families?

Dr. Regina Koepp 10:04
What are some of the common role transitions that you see?

Dr. Sara Qualls 10:08
I think the most, the most common one that I see is families, recognizing that there's a difference in an older adult, and being unable to name that difference in family members aren't clinical psychologists or physicians, they just see the difference. And they keep incorporating the different behavior or the difference in functioning into the existing framework they had, which is usually personality or some other kind of attribution that they make, that they've made their whole lives. And now here, they are watching change, and they keep attributing it to those same factors, when in fact, it's a new cause. So families end up seeking help, relatively late in many cases, because they have been uncertain whether what they're seeing is different enough to require them to step in. And in cases of cognitive impairment, or major neurocognitive disorders, it's very common that the person experiencing it isn't aware or can't see, or at least can't see the scope of the change. And so they decline, the offers and the invitations in the nagging and the encouragement to go be evaluated. And so that puts the family in an interesting dilemma, whether they're going to continue the roles they've been in forever, or they're going to shift those roles in very significant ways. And many family members resist that, because they fear that if they push or force the elder to do something that he or she doesn't want to do, that they're being disrespectful, or being, they're undermining the dignity of the other, or, quite simply, the other will get so angry that it will be a breach in relationship. Yeah, it's very early process of figuring out is something different. And if it is, how do I get it evaluated, is actually a really huge family issue. Often an adult child is calling and saying, Would you see my mother or father for depression? And when I ask a few more questions, you know, does he or she have memory problems? Oh, no, nothing like that. Well, my next question almost always is, so I'm just curious, is she managing her own finances? Oh, goodness, no, we took that over five years ago. And that, for me is is almost a verbatim phone call. I just have repeatedly that, that then signals to me, this family has made some really big adaptations. And they're making an attribution around motivation, that my loved one isn't doing things that he or she used to do because she's depressed or he's depressed. And depression is a perfectly appropriate assessment to do, one should assess for all factors that could be contributing to those changes. But I, my observation is that by the time family members have taken over finances, or helping with shopping for reasons other than mobility, or helping with med management or appointments, there's something going on, families don't step in and do that typically, without there being a gap in functioning on the elders part. Yeah.

Worried about your aging parent's safety or capacity to make decisions? Steps to take when your aging parent needs help.

Dr. Regina Koepp 13:38
Now back to that dilemma of does the adult child step in for even with the fear of overstepping pushing their loved one away or rupturing their relationship impeding on the love older, older adults dignity, what what is generally in your in your purview recommended then in those situations?

Dr. Sara Qualls 14:04
So I pretty consistently encouraged family members to get more information. They should be concerned about dignity and rights. We shouldn't transplant a family member's rights, I don't care what age they are. And there's probably no topic that the that the disabilities movement has taught us more about the net one and it's been really useful. However, families are sometimes exhausting themselves and leaving their loved one in a genuinely unsafe situation. Out of fear around that fear of intruding or fear of disrespecting an older core annoying, and so information is needed. So here's what I tell people. I say you know, there comes a time when you say to a loved one, we just need to go get some More information, let's make an appointment. And if the loved one says no, no, no, no, I don't want that I don't need that. There is a time when you're seeing risk, where you need to need to move, you need to act to get an evaluation accomplished. I recently had a friend call and describe a mutual friend, in which that person was not getting out of bed now had not showered recently, newspapers were piled up, and was not prepared to go out for a dinner that was, you know, regular family dinner. I said, That's not okay, that's not normal, this person needs to be evaluated, you just simply say we're going to go, we need to go. And if there's nothing wrong, that's great. And if there's something wrong, we need to find out, because in that case, this person is is really declining, and something needs to be evaluated. So in that particular case, they actually went to the emergency room. And it turned out to be a very significant medical issue was happening that had been unrecognized. In the case where the person is depressed or perceived to be depressed by the family or difficult personality, but it's different, it's different from five years ago. At a minimum, the family needs to insist that the person contact their primary care physician, I remind families that they can email or fax or send in information to a physician. Often phone call information isn't recorded in the same way. But paper information pretty much makes it into the chart. And so you can express your concerns. And you can detail not what you think is causing it. Don't be a clinician detail what you're seeing that's different. Yeah, particularly the risks that you see. And make sure that gets in the hands of the primary care physician. In some cases, families have plenty of evidence that there's something cognitive going on, the person is just not thinking the way they did five or 10 years ago. And I always use that as a comparison. How is this different from five years ago, not yesterday, or not? How you think a 92 year old ought to behave? compare it to what it was in everyday behavior five years ago. And when you do that, if you come up with Wow, it really is quite different. You may go straight to a neuropsychologist and just sign up for a comprehensive evaluation of cognition, and neurocognitive functioning. And, again, it's very important that the family presents, the information they have, what has been observed, what are the errors this person's making? How is this person responding differently from five years ago, to the everyday world to interactions? And when that happens, you know, I'm aware that I'm asking a family members change the family. That's why I use the family lens. Just simply telling a caregiver to go do it doesn't do it. That's the what. It's the house that challenges families, I don't care if you're dealing with two year olds or 17 year olds, or aging parents or spouses. So we have to sometimes kind of coach people into the house. One of the factors, I think that's awfully important in that is helping the family feel confident that they can do this, and that it's important to do this. I call that raising the risk appraisal. Sometimes families downplay Well, you know, yeah, she has some serious memory problems. But basically, she's doing okay, well, she just drives in the neighborhood.

Dr. Sara Qualls 18:49
You know, they have all kinds of ways of downplaying the seriousness of what they're seeing. And be apparently because they are afraid that the elder won't respond to them. And I sometimes use the example with families that if you left here today, and you went to your loved ones home, and she was on the floor, and she's coming in and out of consciousness, when she's conscious, she says, Do not call 911. And then she goes back out of consciousness, what would you do? And everyone says, Well, I would call 911. And I remind them, that they did that, because they saw it as an emergency. And I want to tell you that what you're describing for me, is someone who probably no longer can call 911 independently and explain what's going on. And if they can't, then in my mind, that's an emergency about to happen. So you, you do need to step in, and it's okay now, to be a good wife, or husband, or son or daughter in a new way. To Be respectful, to be kind and to be firm. This is what needs to happen. I know you don't agree It's what needs to happen. And I'm gonna make it happen.

Feeling guilty about caregiving decisions? How to repair ruptures in the relationship with your older loved one.

Dr. Regina Koepp 20:11
I'm imagining being one of these family members. Because I think "okay, Dr. Qualls, well I agree. But you don't get my older loved one or you don't know how really hard it's going to be to get them there. They're going to dig their heels the whole way." Now with "the how", how do you recommend that the family deals with the fallout of that? Because that's the beginning.

Dr. Sara Qualls 20:37
Yes, it is. And so before we do it, we want to talk about that, we definitely want to talk about what's next. In my experience, it's rare that a family member and I, I would say I could count on one hand over 30 years, the family members who have sustained anger, to their loved one after an evaluation. Almost always, the elder either is unaware of how life could have been without the evaluation, they can't do that mental comparison anymore. Or they kind of lose track of how it all came about. Having said that, I would suggest that the family be prepared to think about how they're going to provide the support and the kindness to the care recipient, as he or she may face some big changes on the other side of whatever comes from that evaluation. And how they can simply and kindly reaffirm their love and their intention, even as they are doing things that now have to be done that are being driven by expert opinion. Right? I do. Let me go back to the decision about the How to even get someone to an evaluation for just a moment. In many families, we spend quite a bit of time talking about who has the most authority in this family from the perspective of the care recipient, who would be most likely to be successful. And there are many times that it's not a family member, that we decided to go through the primary care. And the family then organizes itself to get information to the primary care and follow through that way. So the primary care or a specialist that that person trusts, perhaps she or he has a psychiatrist or neurologist or a cardiologist who is highly trusted, then use that leverage. And the family along the way are the we want what's best for you, we absolutely want you to be safe and independent. And we promise we will not do anything to undermine your independence unless someone tells us we need to. And we want you we want to balance that safety and independence for you.

How to balance older loved one's safety with autonomy?

Dr. Regina Koepp 22:59
I see that as a huge struggle for families is when to step in how much autonomy how much to lean towards safety. Is it that and is it unsafe and, you know, kind of teeter tottering.

Dr. Sara Qualls 23:17
Many families struggle with the balance of safety and autonomy. And unfortunately, many families are struggling with it all by themselves, without any data without any information to guide them. And I think they deserve information to guide them. If If I'm about to change roles in my family, the way I'm a daughter to my parent to the way I'm a spouse, I deserve to have data that makes me confidence that I'm doing the right thing. And I can tell you because as a as a family therapist, I've sat with some older adults who had been identified as being low enough in cognitive functioning that they really needed to move into assisted living. And, and some people have such high social skill. They've made me question my own judgment. And I've gone back to the reports, and said, Oh, wait a minute, you know, I remember one woman said to me, you look at me, I have balanced a $3 million budget every month for the last 30 years. Don't tell me I can't manage my finances. It did make me question myself. And I thought, oh my goodness, if I'm questioning myself, what's that like for the son and daughter in this case? So I encourage families to get information, they deserve it. And honestly, the elder deserves that it's not. The judgments aren't being made on a willy nilly basis. They're not being made out of someone's over paternalism, or over emphasis on independence. It's being made on some empirical data that say people who have this these kinds of cognitive difficulties face these risks. And when you've got those data If it makes it easier, I won't say anything makes it easy. But it makes it easier to then broach the older adult with, okay? Things are changing here. And I think you know, you're changing. And I want to help you navigate this with all the dignity we can muster. And it's going to be hard for both of us. But please know, I'm always loving him. When families, they just kind of get so anxious, sometimes they don't think to say those things, or the history of the relationship wouldn't allow it. We see plenty of families with very messy histories, where they come to this elder care, caregiving work in later life, having had having been harmed by the care recipient earlier in life, or having watched the care recipient, be mean to someone else in the family. Yeah. Or having just had a breach perhaps over a late life marriage that blends families in ways that are complicated. those factors make family caregiving very complicated. And that's if there's, if there's one thing that I've been trying to emphasize in my career, it is to locate the caregiving inside the family, don't dismember it, don't treat it as if it's this work, we can hire it, that's not what it is. I see caregiving is an evolution of the family. The family is evolving, much like it did in adolescence, from adolescence to young adulthood, the family, the family evolves in a variety of ways that are complicated, and confusing. And the sands are shifting back and forth day to day sometimes. And not surprisingly, we get a little anxious during that time. And sometimes we get a little over involved or a little under involved. The same thing is happening in later life to families as they try to figure out how to navigate this transition.

Every family is unique and will make changes in line with their patterns as a family. Learn more here.

Dr. Regina Koepp 27:04
When you say to "locate the caregiving inside the family", can you give an example of that?

Dr. Sara Qualls 27:12
I recently was had the privilege of consulting with a family through tele-health, whose lives in the mountains in Colorado didn't have access nearby to expertise. And their care recipient in this case was a father of three adult children is pretty high functioning family actually. high functioning in the sense that they spoke directly about things, there wasn't a lot of baggage attached to it. They processed a disgust. Not exactly evenly but close to evenly around the family. There weren't big secrets. In this case, the father had been a fairly prominent person in the community and was declining. And when our consultations began, the siblings were struggling to decide whether to even have him evaluated, because in the view of one sibling that risked insulting his dignity in a way that he would never recover from. And other sibling is shoring up their father by doing a lot of work, and providing a lot of services and happy to do it, not not resenting it, but starting to worry, that was enough. And then there became the danger of driving. And the driving. All of the siblings agreed, was becoming risky, particularly because the father wouldn't accept boundaries on the driving, he would say what? And I think he probably forgot to be honest, or maybe he just intended to say, Yes, I will, and would, would engage in in pretty risky driving in the mountains in Colorado in the winter, and without boundaries. So when I approached this family, and began to hear the story, at first the story was debts changed a little bit, but not a lot. We met, we want to make sure he's, we support him the max possible. He's a really interesting, wonderful human. Within an hour and a half or two hours of conversation, it became clear to me that his functioning was much lower than they initially portrayed to themselves, not just to me, they weren't lying to me. They weren't seeing it. And as I probed more they told more stories. Pretty soon they're starting to see the stories they're telling, as reflecting more difficulty. And now the dilemma comes, how do we do this work, for our father with our father together, who's going to do What. And so I did a video consult with multiple family members, the siblings and their spouses, and it was quite touching. To be honest, everyone was pretty connected and pretty engaged and wanted the best for each other and the Father, and yet the different views on how to proceed, they had different ideas about how that could go. And I needed to pay attention to the dynamics in that family, as to how they were going to be able to work this out, there wasn't a single right way to work it out. There are many ways, my job was to ensure that they stayed clear about the data. That was first the need for data, that they get the coaching they deserved on how to go about making these transitions. And stay clear about the risk factors that they could hold on to and then forget, hold on to and then forget, yeah. So what I'm when I say locate the caregiving in the family, there were caregiving tasks, I can look at it, as from an industrial psychologists perspective of their their tasks, the jobs to be done here. In this case, as in every case, the task needed to be done by the family in a way that was congruent within the family. And as I was trained very early on, we are inevitably ignorant of every family, we join for a period to try to facilitate and foster their transition. We just don't know who they are when we walk in. Of course, we don't. So we come to find out who they are. And we help them think about how to use the roles and skills and gifts they have to move along this process. Now, in many cases, my work is with one family member, I'm just working with one caregiver, that case I just gave you was was a privilege to work with multiples, but often I'm working with one but I'm still thinking family, who is the set of people and what is their history? And how are they related? And what is their structure? And how do they function in areas like communication, or nurturance problem solving for conflict, when I can understand that, then I have a much better shot at helping the person sitting in front of me provoke or facilitate change in the system.

Dr. Regina Koepp 32:38
Now since we're speaking so much about families and role changes, one concept that I often hear, and I'm curious what your thoughts are about this is with the role changes and role reversals. So I often hear particularly adult children saying and this get reinforced by some professionals, that now you're parenting, your older loved one or now you're "parenting your parents", I'm curious what your thoughts are about that.

What a geropsychologist and expert in caregiver family therapy thinks about the term "parenting your parents"

Dr. Sara Qualls 33:12
I'm not a big fan of the phrase "parenting your parents". It's a confusing phrase to me, because it seems to me that it risks undermining dignity. I think what it's attempting to do is to validate the experience of the family member who's now taking over so much responsibility or another. And so I respect that goal. I just, I prefer some different language that I sometimes humorously say my mom just smacked my hands too many times, for me to forget that she's my mother, even when I diaper at her. And I literally did. So I've been through the transition, I get it. But I think families need to understand is that especially in the case of dementias, that that people lose their ability to do complicated skills before they lose the ability to do simple skills. So there's a sense in which we sometimes watch our older loved ones, blues abilities that they've had their whole life and become, even struggle sometimes to do simple tasks that we trained very early childhood. So there's a sense of which cognition goes backwards in the same sequence or the reverse sequence that it was acquired in childhood up through adolescence and young adulthood. However, a parent or a spouse is always a parent or a spouse. So I it's really a quite complicated tasks, to figure out how to relate to another in a way that honors the history that most people especially if they Don't have any cognitive impairment, and they're needing help, because of vision impairment or mobility difficulties or severe physical illness. But even in the case of cognitive impairment, we've remembered that history that history is who we are. And now here we are needing to take on roles that have shifted us in some important ways. So I had about 11 years in which I had the chance to intermittently sit beside my mother, she had a massive stroke, recovered some and then went into a vascular dementia. And I had the opportunity to sit by her and think about how to have a conversation that was meaningful to both of us that honored our history, and incorporated the assistance I needed to provide to her. How do I do those things at the same time, it is winning, when you wrestle with it, and you find your way, it is so beautiful, it's touching. However, it's a wrestling, it takes work to figure out how to, for the fifth time, or the 10th time or the 30th time, unravel, confused finances and unpaid bills in a way that doesn't demean the person that you're doing it for? Or how to answer the question that's been asked 40 times today, in a way that doesn't demean the person that you're caring for. It takes a lot, and in our personal history, inevitably will be tied up in that. I know so many families who have created a kinder and gentler relationship in their caregiving care recipient roles than they could have before because of difficult personalities. I know other people who find it that they have to move into a more almost clinical detached role in order to accomplish those tasks. Because the care recipient is so her grumpy, her grumpy, irascible. And so there's not again, there's not a right way to do it. I just really invite families to sit with the experiments that have to be run every day, as we try to interact with someone who needs care in a way that is a typical of adults.

Dr. Regina Koepp 37:34
Yeah. and maintain the dignity of adulthood. Yes, that's the struggle and the wrestling, internal wrestling, because the work is really on the caregivers shoulders. That particular work.

How to invite the care recipient back into the relationship?

Dr. Sara Qualls 37:51
It is. And I sometimes also remind caregivers to invite care recipients into the into the relationship, don't treat them as an object. The care recipient has a view as a voice, that can be often quite productive. So the caregiver can ask, you know, this is, this is challenging, I need to, I need to provide very personal care to you. And that's something that I've never done before in my life. And you've never had that for me before. And I wonder what we can do to make this more tolerable? Or maybe even meaningful? What would we have to do to do that? We could have that conversation. I can go into someone's kitchen and cook for them, and engage them in guiding me in ways that provide a role for that person. I'm not doing it for them or to them, I'm doing it with yet shared.

Dr. Regina Koepp 39:01
What's coming to mind are so many families I've worked with. And sometimes what I do is I meet with the family together, then I meet with individuals separately, then I bring them all back together. And when I oftentimes meet with the care recipient alone, the care recipient has so much to share and offer. But is is not invited. Or just that the there's an underestimation of what the care recipient is capable of offering often. And so this reminder that you're offering us, Dr. Qualls, to invite the care recipient to share in the process of caregiving as a way of making it meaningful and beneficial to both really what you're sharing today is that this is all relational. We don't care given a vacuum we care given a relationship and so how can both people contribute in that relationship I was remembering also a couple. I worked with The male member of the relationship had significant medical problems, two strokes up high, high functional care needs cognitive impairment, still able to communicate relatively, and the wife felt like she was doing everything. And then I inquired, well, what what did he provide before that wasn't physical. And she offered that he provided some spiritual opportunity for growth and connection. And so we discussed ways that he might offer some spiritual support and guidance to her while she was doing some of the more demanding physical tasks so that he could still contribute even if you couldn't physically move or couldn't communicate in the way that he used to before that, spiritually, he was still intact and could offer some some guidance and support. So I just I think that's a beautiful reminder.

Dr. Sara Qualls 41:00
I agree, I think I think that often, the caregiver may not notice what the care recipient is giving. And I think the caregiver may not feel like he or she can give anything. So sometimes just getting people to pause and be mindful of what's really happening, the kind words the having the caregiver, say to the care recipient, that really does matter for me, when you do X, or when you try to do why even if you can't do it, before you call me. Thank you for doing that. I think even in the more difficult conversations that families dread the most around driving or moving decisions that most of us would say we don't want to, we don't want someone to take those rights to make those decisions away from us. So we would fight about that. We anticipate that if we were care recipients, so we know as a caregiver, that we are dreading those conversations, even in those circumstances, getting really clear how the care recipient is an active and meaningful participant is important. So just a simple example is sometimes I will tell a set of siblings who are facing this about a parent, go look at three or four or five assisted livings and choose the two that you think probably serve your mother the best or the three, and then meet with her, and make it clear that staying in her home really isn't an option that this family can't afford the level of support or provided personally that she would need to have support 24 seven, so she's going to move into an apartment now. And I pay attention to that language most assisted living looks like an apartment, she's gonna move into an apartment now with some services. And so they want her to have the best choice for her. And they've done some groundwork and they want to go with her and share some some what they found, and see what matters to her. And if she doesn't like those, they'll find some others. The point is that often families get so anxious about those transitions, they prepare it and they prescript it and they sort of rush through it, instead of slowing down and thinking, Okay, we can imagine some parts of this that could be meaningful, and then we can invite her or him into joining us and thinking with us about what's important to him or her. And I've been surprised frequently by what's important to somebody, you know, having the bed near the window, could be of great importance or great offense to someone, you know, I just or it could not matter at all to someone. The point is, families can only do so much when they do want to protect the dignity. And then there is a point when they actually engage the the older adult in thinking with them about what could happen next, or how this could happen in a way that is most meaningful. I also think here recipients often feel a really important need to tell the caregiver that the care recipient fears being a burden. Yeah. I mean, seriously, who of us, does it? Yeah, we're a very autonomy organized culture. And so that's an important message and in teaching the caregiver not to poopoo it or just push it off or say no, no, no, no. But to think about it in a more thoughtful way can be really useful. So for example, inviting the caregiver to say, you know, here's why. It doesn't feel like a burden to me. And here's the condition under which it would start to feel like a burden. And I promise you that before we get there, I will talk with you about that, and we'll do something different. Again, it's, it's inviting this work of caregiving to be done within a relationship in a way that has integrity for the relationship, and actually fosters the relationship.

What about families with a history of toxic or painful relationships?

Dr. Sara Qualls 45:27
Now, certainly, I'd be remiss not to acknowledge that I see families in which there are deep rifts have been deep rifts for a long time, and caregiving is feeding right into them, they've just incorporated it into a long term rift. Those are much more challenging. It takes a different kind of skill. And us honestly, sometimes, we simply set a different kind of goal for those families. The goal isn't to be one happy family. The goal is to accomplish this work that needs to be done in his respectful and non harming way as possible. There are moments that I've had with families in which some healing took place during caregiving, that wouldn't have taken place any other time. But because caregiving brought them back together, it was possible. I would say those are not frequent. They're maybe not rare, but there are occasional families that have are entrenched in a rift. And embedded in that are not probably going to show up, anxious to become a better family. However, we can often keep the care recipient from being upon and feeling like upon, or the caregiver being abused if there's a primary caregiver. So those the goals just shift a bit. Again, we're trying to help this family, do this work in a way that's congruent with this family in a way that does no harm and does good.

Dr. Regina Koepp 47:02
You have just laid so many pearls of wisdom, and I really this valuing the integrity of the relationship, and making sure that no harm is done to either party. And that good is done. Ultimately, whatever shape, shape, no harm and good takes. Part of part of my mission with this podcast is sort of to to remove some of the mystery around therapy, and especially therapy for older adults and older families, because there is a lot of stigma around mental health for older adults or therapy for older adults and older families. So now how, what would you say to families who might be considering should our family engage in some family therapy for older families? How do families go about making the decision if family therapy is right for them?

Interested in caregiver family therapy? Tips for finding a family therapist.

Dr. Sara Qualls 47:55
I think often families get advice from someone who's done an evaluation of some kind, that this is going to be a long road, it looks like your family is at the beginning. And you probably need some guidance along the way, for example, or you're struggling to do what you need to do. And there's some tough decisions lying ahead of you, I encourage you to get some help sorting that out. And I think that the helpers are best identified at the local level. I mean, you can go through a service like a Psychology Today kind of service to find people in your area. I often encourage people to go through their area agency on aging, the Area Agency on Aging and your region has maintains comprehensive list of services. And you can find the Area Agency on Aging in a region by typing in is the link that takes you to the the national triple A website and then you put in a zip code, you can find the Area Agency on Aging, they have a really good sense of who's in the community who can help families, whether it's a care manager or it's a clinical social worker or a licensed psychologist or licensed professional counselor. The resources vary so much across the country, and some lmft is our marriage and family therapist, of course are very well prepared to do this. Although I will say that most I think most Marriage and Family Programs kind of emphasize the first half of the lifespan, a child rearing more. So the fact that you get a marriage and family counselor doesn't suddenly mean they know how to navigate this space. So I would encourage a family to use the resources they have for referral if their particular area

Wrapping Up

Dr. Regina Koepp 49:46
Yes, and I can link to the eldercare locator for to find your local area agency on aging and the show notes since Great. Well, Dr. Qualls thank you so much for sharing all of your wisdom and insight about this caregiving relationship, and how to preserve both parties or all parties. So thank you so much for being here. I really appreciate it. And I have learned so much and just reinvigorated also my passion for family work. So thank you.

Dr. Sara Qualls 50:22
Thank you for interviewing me and letting me talk about my passion. Obviously, I do care a lot about it.

Free Download

Dr. Regina Koepp 50:26
If you are concerned about a loved one with memory loss, download my free memory loss guide. In it I talk about the signs to be mindful of. I talked about the benefits of early diagnosis of dementia and what to do if you're worried that your loved one is showing some of the signs and symptoms of dementia. So head on over to the show notes and download that free memory loss guide now. That's all for today. Now it's your turn. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation too. One last thing, a special thanks to Jhazzmyn Joiner, our psychology of aging podcast intern, for all you do. Lots of love to you and your family. Bye for now.

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