Hello, everybody. It's Nancy May and Doing it Best With Eldercare Success. And today's episode is one that actually started with a question I had myself. And it's all related around what happens to those of us that are not just caring for one parent or two parents, but three or four, or maybe even five family members over the course of time. And What happens with our own sense of identity and wellbeing? Do we forget who we are? Are we tied to that or not?
So on that front, I have a guest here today, Dr. Evan Plyes, who's a PhD and licensed clinical psychologist, board certified gerontologist. Psychologist at the Center for Health Outcomes and Internal Disciplinary Research at Massachusetts General Hospital in Boston, Massachusetts. He's also a faculty member at the Harvard Medical School and provides psychotherapy services to caregivers to improve their emotional health and wellbeing and does research on adults and caregivers as well.
So this is just such an important subject, Evan, that. Let's just dive in and get dirty in a good kind of way.
Yeah, well, thanks so much for having me. and, uh, yeah, so I, I do a lot of, work clinically with, caregivers. So, I'm coming at it from kind of like the therapist, doing psychotherapy angle. And, the issue you're discussing. If we think about caregiving as a role that we inhabit, just like many other roles in our life, it can be, you know, employee, uh, parent, child, uh, et cetera, caregiver is another role that we add, over the, the course of our life.
At different phases of life and at different circumstances, roles become bigger and, some roles emerge as, taking up more time. some roles also give more meaning and purpose. and so I think when we, when we think about that, like, feeling, very connected to being a caregiver. it, it's really being connected to that role, that you're inhabiting and how that has surfaced as something very important, and often time consuming for you.
One thing I feel is very interesting for us to even talk about is how many people, although we are caring for somebody that we love, especially we're talking about elder care right now, really elderly parents, it could be a spouse, it could be another family member, older people, that the term caregiver is one that so many of us shun.
I would even say I did that myself, even though I was not technically a physical hands on caregiver all the time with my folks, because I did this from 1200 miles away. I had a team of people that were working with me or aides to manage that. Daily getting out of bed, making sure they're physically clean and safe and mentally safe as well.
But that term caregiver is one that I personally shunned for a long time, and it wasn't until later on that I realized, you know what, taking care of everything else is what it is, and it's almost like, I hear people say, oh, that's almost beneath me, I'm not a caregiver. Do you find people are saying that or doing that or just quietly admitting or afraid to admit that caregiver can actually be a good thing?
Yeah, sometimes there's people who don't identify with, uh, the role of caregiver and, also there are language preferences. Some people prefer care partner, carer, or, defining it in some different way. I think that, in my experience, most people are okay with the term caregiver. I think. I think where it become where it can become problematic is, it is kind of negating all those other roles. so when people identify, like, as I am a caregiver, then, you know, people are multi dimensional.
It's like you lose your identity. I'm no longer a leader, an executive, I'm a caregiver, but we can be both.
Yeah, absolutely. And, where that gets people in trouble that I often see is when we actually think about a caregiver, like, that term is also used professionally, so it's a, it's a term that's coming from the field of medicine, and I think, inherently, I think sometimes we actually, when we name ourselves as caregivers, um, what are we comparing ourselves to, like, I think sometimes we're comparing ourselves to, what a professional nurse would do, what, people in the field of healthcare
would do, and we're simply not doing it. In that type of role,
And maybe I don't want to be a nurse and maybe I don't want to be a doctor or maybe I don't want to be an aide, but I'm, I don't want to use the word stuck, but it's the only word I can think of, like stuck in this role. It's my responsibility to do, well for somebody that I loved and who cared for me. But it's, it's almost hard to, adopt that the term, but it's really, I think the role in making that merge into now being the one that they are dependent on.
yeah, and it's, I mean, it's like, it's kind of like,
It's scary.
yeah, and setting yourself up for a job with, you know, hopefully do get training,
was about to say, John, with no training, you just, sometimes you're just like, Oh my God, like this, you know, it's hit the fan. I gotta jump in and fly down or fly out to somewhere to, to pick mom up off the floor.
and again, from the mental health, kind of emotional health side of things. It's more of that comparison. So I'm making comparisons of myself and my performance to that of a professional.
And what if I fail?
What if you fail? Then I feel like the stakes are a little bit higher, but also it's not really a fair comparison, not just because of the training, but people who are professional caregivers have shifts. And so that's a huge difference.
Family members don't. We're always on. Whether it's physically there or emotionally there, right?
exactly. And, and one of the things that I mentioned people as well, if you are a nurse in a hospital and your spouse comes into that hospital, likelihood is they're not going to give you that assignment because that's a conflict of interest.
Mm hmm.
So, you're really not a truly professional caregiver, the field of medicine and healthcare has identified that, you being in this dual role is not the best way to provide care. and yet people find themselves in that dual role. That's not to say that caregiving is bad. like a bad thing by any means, or that people don't care. I think it's the, the way that you set your expectations up of that role. So I'm holding myself to a standard that really, I shouldn't have to hold myself to.
So one of the things that I like to do with some folks is rename what caregiver is. So,
That is.
about, well, it really depends on the individual, like, what is that role? because caregiver, again, that is a healthcare professional,
But what does caregiver look like to them? Is that cleaning up and helping mom and dad cook meals or driving them to the doctors or helping them stay physically safe and well, or is it from 1200 miles away, paying bills and making sure that they do get to the points that they have the right care, that, that the people who shouldn't be there are not there. And the people who should be there are there kind of thing.
yeah, is it the, the present son? Is it the, loyal spouse? whatever, whatever. Make sense for you and in that role in that relationship, but I do think redefining it, can be powerful for people because again, when we were adopting these names and these roles that are preset. It also kind of comes with this preset, expectations for how we're supposed to do our own baggage. Yeah,
so, there are a couple of different things I want to discuss, just quickly, starting out in the role as a quote unquote caregiver, whatever that might look to the outside world. One of the things that you're suggesting is that you sit down with yourself and maybe a parent or siblings or a spouse and say, this is my definition of caregiving. Is that true to you? Or just do you do it for yourself to say, this is what my expectations are.
This is where I'm going to be And this is how the role is going to evolve over time
Yeah, having that conversation with yourself,
is the thing to do. Yeah. So you don't just get into, I call it the head trash, a non professional term, but another term I, to it as like the itty bitty, you know, shitty committee. I'll, I'll bleep that one out.
I guess then, I would become the, uh, like a professional head trash man.
Oh, so yeah, you, that turns you into human sanitation collector.
yeah, and see what I did. I renamed it and now I have a different set of expectations myself as a, as a mental trash
As a mental trash collector versus a geropsychologist. So one of the reasons why I wanted to have this discussion to begin with, and we had talked about the other week was. Really looking at people that I have gotten to know over the years who have been in this role of, we'll use the term caregiver here, for multiple people over time.
they start with a mom, then it goes to mom passes, then it's the dad, then it's the spouse, then it's, an in law or some, so now they're in this role for such an extended period of time. And. I'm not a psychologist, but there are certainly those, those highs and lows that we get addicted to. Right? it's the endorphins that come into play, the highs of the great joys and the success and even the emergencies, that adrenaline that, goes through you.
And then the lows of when things don't necessarily go the way you had hoped they would. and then when those, that, that role as quote unquote caregiver ends because there is nobody else that needs your help and your family. There are two things that I've seen.
It's a sense of extreme grief because now the identity of who that person is has been, and this is the exact term that I had originally heard, and which is why I reached out to you, was -codependent on that role and responsibility that you have.
Not as the role and responsibility of being a leader in a corporate world or as an employee someplace else or even a cashier at Walmart, but you have become so attached to that role as the caregiver where somebody else is dependent upon you all the time. And now, poof, they're gone. And the change in personality, the grief, the wondering of who am I anymore and how to build relationships again in a way like you might have done before. Which may not be possible.
I mean, how often does that happen? And, beyond the people that I've seen, is that something that's more prevalent than we realize, even as, as individuals, because we're the ones going through it.
Yeah, it's very common. I would say in my experience that folks do grieve losing the, you know, the caregiving activities and and caregiving role.
Not just the loss of the person, but the loss of the role, uh, the need to, the, the desire to, to help somebody or the need to be there for someone.
Exactly. And, you, you hit on it early on of, you know, we know that caregiving is met with stressors and challenges and. Exactly. Profound insights, it, it is not all negative. There's a lot of positive that comes from caring for somebody, there's, individual growth. There's, uh, being able to restructure a relationship in a meaningful way. And, and there's also kind of this, like, Transhuman kind of meaning that can be, taken from the act of caregiving.
It's, it's very powerful and it gives you meaning and purpose because it's a very powerful thing, rooted in love. And, it was a very strong emotion. So it makes sense that, we get a lot there's these really positive things that we're getting. and so it is difficult to, change that role. I, I would say, I'm hesitant to to say, kind of losing that role or abandoning that role.
Because I, I think that the things that, the love, the, helping others that, generativity or family, whatever the kind of source of meaning and purpose that you're taking from the caregiving role, that persists. if, somebody in your family passes away, you, it's not that you no longer value family. it's just the particular behavior. That was scratching that itch for you.
The day to day activities have changed, but the experience has ideally made you a, a more rich human being or person, not just to yourself and your family, but maybe to, to others in society that just cause how you react to them differently now.
Exactly. And, again, the thing about you, I would call it like a value about your value system.
Do they change, you think?
I don't think the values change. I think the behaviors that scratch the itch of those values change. So, I may still value helping others, or I may still value, respecting my elders, even after the, caregiving role for an aging parent ends. I just need to now find another way. Another behavior to enact that's what happens in the grieving process of you're having to adapt, you're having to find new behaviors to maintain that sense of identity. Yeah. So
Okay. So I'm, I, I'm going to need a little forgiveness here because that almost sounds like an addictive personality. It's like you go from, from one habit to another, to another, you know, not that I'm a drinker, although I do enjoy a glass of wine on a Friday night every day, most Friday nights. But How do you replace that? That one desire, that driving desire that you're so ingrained in now that has become a day in and day out habit with something else. Is that a fair assessment or not?
Yea, so it's a little extreme in saying that's an addictive personality.
You know, why, why do I, why do I smoke?
I'm not a smoker. I've never had a cigarette. So, but I know other people who do, and it's everything I've heard is it feels good. You know, it makes me feel good. It's that sense of whatever it is. It's, it's a euphoria that makes me feel happy. my mom who is a smoker for many years, when she quit, even after she quit, she says, Oh, I could light up tomorrow,
So, so maybe it's,
self soothing with
you know, it, it could be relaxing, could be activating, could be, so there's something you're getting something from that behavior. So, if I choose then to quit smoking, I would presumably have to replace, you know, whatever I was getting with a new
something else, right,
Or, or it becomes very challenging and, I'm not setting myself up to be, you know, for sustainability of, of quitting smoking. Um, so you can think of life changes that way. if I'm dropping the identity of being a smoker, there is a behavior that I was previously doing to get a benefit and that's why I kept doing that behavior. Now, I'm changing the behavior. And I need to do something new, replace that with a new behavior that's doing the same thing. So I might go for a walk.
Um, I might stretch. I might, do something that makes me really happy. a jolt of, serotonin. so, but I'm, I'm continuing to do something in my life that is for the express purposes of. self soothing.
right,
Behavior changes, and so it's similar in thinking about if one of the things that really has connected me to that caregiving role is being able to meet, being able to meet myself with somebody who's, at a vulnerable time. So now what that looks like might change. Yeah, I might, uh, volunteer. I might, find other ways in my life to, enact that need that I have. And I would say that's probably a little bit more specific.
I would, it's probably a little bit broader of like being caring family or whatever, but you're changing the, behavior. and that happens throughout life. You know, I, if I value my health, the way that I enact that. Behaviorally is going to look different from my 20s to my 40s to my 60s to my 80s.
So. In the caregiver role, because now we're going to, we're, we're no longer a caregiver, our role and responsibilities to somebody else in that. That might have been frail or need us for to survive, really, is what that is, is changed. And so we have to go back to what is a new norm and whatever that might be. You say, going back to habits that made us feel good, What if we forgot what those, because it was so long, we forgot what made us feel good. Because we do, we just don't know anymore.
It's been 20 years and the friends that we had have disappeared because we don't have the chance to go out with them. And it's a job to keep relationships going, whether they're friends or family members, . How do we get over that hurdle and finding what that new norm might look like if we don't even know where to begin?
Yeah, so I guess it does rest a little bit on the assumption that we have a, a good sense of self and our identity. Um, and I would say it's probably a good thing to check in on yourself with that. There are a lot of websites out there that, help people kind of identify what their values are. Um, Yeah, that language again is used a lot.
but even just, having some check ins and this is why I also help people, make sure that they're naming all the roles in their life and not losing, that sense of who they are.
Not just having one, but having multiple, even in the course of caregiving to be able to say, you know, I like to knit. So even though mom and dad may not be doing it, I'm going to, order some yarn and watch a YouTube and get back into it because at the very least I can. Make a sweater for mom, even if it doesn't look perfect. Right.
Exactly, and, making sure that you, don't lose sight of, who you are and and also recognizing. I think 1 of the benefits of doing that kind of regularly with yourself is there might be times that that's not. Feasible that that has to take a back burner to other responsibility,
That's a practicality of, of when somebody else is so dependent upon you to live there every day.
yeah, if, if I'm taking care of a parent and they're in the hospital, it may be that I can't, like, while they're in the hospital, I'm not able to, do the, the baking that I love. Um, but, that doesn't change that. That's a big part of who I am and, how I, I get joy. It's just that this other role is requiring a little bit more time and nurturing right now. Um, but that doesn't mean that that other role isn't important to who I am anymore.
Well, and even we had, we had also discussed it at one point, a little bit about how you take, how you take the lessons that you've learned as a caregiver and create, I wouldn't say a new identity, but, um, A new sense of, or an additional sense of responsibility. Not that we want to pile on more responsibility. Sometimes we just like, at the end of it, just, I am so physically and emotionally exhausted that you end up being numb for a while.
And I think that's a normal reaction for many who have been so entrenched in, in doing this work for, I wouldn't say it's not work, but, but having the responsibility for somebody else. And the, the only outcome ultimately in, in an older person is when they pass and that versus when you've got kids and the outcome is they leave the nest, they go to college and, and they start their own family. So it's a little bit more positive than at the end of someone's life.
Although at the end of someone's life, if you make that life have more meaning at the, even at, I say even to the very last breath, then, uh. That's positive too. Creating a new, a new role or new responsibility or a new way to, to take those skills and leverage them is, is a good way to just at least make the transition, I would say. Is that correct?
Yeah, and, loss, grief, bereavement is. Really intense, and it may not be instant that you're, you're like, okay, now you wake up the next day and I'm starting this new
Life is all better. He's gone. Next.
Yeah, exactly.
Doesn't work that way.
Yeah. So, um, it, it takes time. I think. Also, the reality is it takes a lot of, legal and administrative time. I would say death does not mark, necessarily the end of caregiving. the way we set, have things set up is, there's still a lot to be done. and so, there's actually that role kind of continues, uh, for a while.
And continue for years. It was at the longest I heard of somebody 17 years. And, I've shared with a very close friend. I said, you know, every. As, as not just the POA for my folks, but also their, their executor, trustee, every piece of paper that I touched after the fact in my personal grieving process is. I feel like I'm going through that last day all over again. It's, it's touching one more thing. It's just a reminder that they're gone.
And that's, for those who are listening, I want to let you know that with others that I've spoken to, that's pretty normal. And since we have a geropsychologist here, I guess maybe you can either reinforce or tell me I'm full of, what, on that
that's normal. Yeah, no, that's definitely normal.
Okay, I was like, oh my God, I thought I was like losing my mind. I'm not like a whack job here going on, but thank you for reinforcing. I have, uh, I have not lost my mind. That is a pretty normal sense of, of feeling
Yeah, absolutely. And, and, you know, there, there's a lot of feelings that come with, that reminder of loss.
and that responsibility and other, other families, members who don't have that role will never experience that the way that you did.
Yes, the, caregiving, in the verb tense is, is not contained to 1 person, or very rarely is contained to 1 person. Um, but everybody does have a different experience. and that's true of, when the care recipient is alive and that's true after, the care recipient passes, everyone's caregiver role experience is, is different. And, it comes with different emotions, but I think pretty universally, loss is hard and, really challenging and, and.
Associated with a lot of negative emotion, I think prevailing, there's, it's not all negative emotions. There is, moments of, joy looking back on, the person or memorializing them, remembering them, um, hopefully being able to evaluate your, actions and role in a, in a favorable way, uh, relief, uh, a lot of times that, and that's a very normal. emotion, and a lot of it's sadness.
So, just before we wrap up, I want to talk about maybe three things that you would recommend people do to, to help them through this process and understand that even though you have become Well, the term I use when I reach out to you is, codependent. Maybe that's not the correct clinical term. But you have become so dependent on identifying in that role and the responsibilities that they become habitual. What are some things that you would recommend people do?
I mean, we talked and I said, one of the things that I did was create this podcast to really take all the years of learning and experience and share that with others, not just through my own life, but through people like yourself to bring together, to have that conversation and say, okay, it's, it's not necessarily a new identity. It's a, it's a different, different way of taking those life lessons and hopefully making other people's lives just a little bit better.
And I see people write books and some do different things. They volunteer, but what are some practical things that you would recommend? somebody do to at least honor the grief and come back to what I would term a new normal. So that, that weight of the grief is not so compressing,
So, I, I think 3 strategies, 1, is about memorializing the person. So, that person will continue to be in your thoughts, will continue to be in your world and your environment as well. you will get reminders. And so,
like your guardian angel kind of thing,
it, it could be that it could also be a picture, that you see, um, and, um, And so I think having some type of way that you're memorializing the person is kind of taking more control over that. and, being able to set up those thoughts and reminders and images in a way that kind of fits for you and is, respectful of the relationship that you had,
so memorializing somebody else, you taking the action to do so actually puts the control back in your hand versus the person who needs and need and care because they're gone. Is that, is that a correct, Description
I think it gives you more control over your grief process. it allows, you are constructing something for, a grieving process for, or and
being controlled by the grief.
exactly. So it gives you a little bit more power in that relationship. I would also say, abandon any timeline expectations you have around the grieving process. Like, okay, it's been 6 months. I should be feeling this way, or I shouldn't be feeling this way, or it's been a year. So that
weeks, I should be going on.
Yeah, exactly.
The corporate world, like, okay, you've got your 10 days of grief, now get back to work.
Yeah, exactly. It's not like, uh, taking leave. Well, I mean, it shouldn't be like, taking leave where, you get an X amount of, time for grief. everyone's journey is different. And so there's no timeline when you have a timeline and you start to, evaluate your, your grief and your emotional response, then you're going to start to judge yourself and it's just going to make everything worse. So I would say there's no timeline.
And don't let other people tell you that there's a timeline. I've heard that too. It's like, it's time to get back out. If you don't do that, others are going to drop you as friends. Well, if they're going to do that, Then, screw it. They are not your friends. It's time to move on, is my attitude. They weren't your friend to begin with, if they've given you a timeline. Just, Next.
Yeah. It sounds like not a very supportive friend. Yeah, I'm a little harsher, so. Um, and then the other thing I would say is, kind of like what we were talking about around, reminding yourself of your values, and adjusting your behaviors to make sure that, you are, enacting those values.
So. the example that you raised of, doing this podcast, I'm, I'm assuming that, if you were to do a values, exercise that, generativity or, that might be something that you really value, and so, uh, you found a behavior to enact that value.
I think when people do consider, this new normal, and, thinking about what does life look like now, making sure that you're keeping those values in mind, and I think the reason why, and what makes it challenging, because it might seem kind of intuitive and natural, really intense sadness is Makes us want to avoid.
Makes us want to avoid what?
Do whatever we're doing. Yeah, I mean, it, and it makes sense from a body perspective. I don't want to, I don't want to do something that I know is going to make me feel really, really bad. So, if I took a walk after dinner every night for 50 years with my spouse, and then they passed away, and I cannot bring myself to go on a walk because it's too sad. It, the grief makes you avoid that behavior.
Knowing that what I got from that walk, is maybe companionship, I value health, knowing those things allows you to replace that behavior or rethink that behavior. So, you will want to avoid things, sometimes. again,
because they hurt. They're painful, right? You want to avoid pain, whether it's physical or emotional,
people rarely sign themselves up to, receive really painful, situations. So, yeah, we naturally avoid it. But making sure that, you know, the detriment of that is we could avoid behaviors that, give us meaning and purpose and then it creates this cycle of, now I'm not doing the things that give me meaning, I'm feeling even worse now. I'm just like stewing in those negative emotions and then we can downward spiral. So, very early on.
not even forget making behavior changes, forget, finding that new normal, just being aware of what are the things that give you meaning and purpose and that you value and that you want to make sure make it into that new normal. Just knowing that is very powerful. Because, eventually you will, find new behaviors that kind of fuel that. And so making sure that you're, scratching all those itches, doing things in line with your values and and you feel like yourself is going to be really important.
This has been a really fascinating discussion. And, I'd like to just add one, one point if, if I may, and you can correct me if I'm wrong, but we're talking about values and the values that we have And I guess reawakening or reidentifying what they are within ourselves after a loss, of a role or a person, whatever that might be.
And understanding and sort of reidentifying what's Meaningful to you is one thing, but I also think that it's important to let others around you know what those are so they don't try and impose their values or their sense of what you should be doing on you. And sometimes that takes a little bit of firmness to say, no, that's not what I want to do. That's not what I stand for. is that correct?
Yeah, I think it's great to share that with with other people. And I think it gives other people, kind of a framework also it helps them support you. so. the more concrete you can be with yourself, and identifying those values, the, the more, easier it will be to share that with other people.
thank you, Evan. This has been, truly, I think a very important conversation that we all need to have With Ourselves. And with other family members and our friends, not just at the end when it hurts, it hurts a lot, but throughout the whole process of caregiving so that when that day comes, it's, I don't want to say it's easier, because there's nothing that can truly prepare you for the loss of somebody that you love.
And, what I've learned is that each loss is different as much as somebody will say, ah, you know, it's kind of the same. No, I think that's, I think that's butkus. It's not true. because everybody's way that we exit this earth is slightly different too. Even if, The movies say otherwise, or somebody else tells you, but are there any sort of last parting words that you would want to share with my audience??
Yeah, to end on a, beautifully morbid note,
please, dig that hole, no pun intended.
if we think of, You had drawn the analogy of parenting and caring for, uh, an elder, I think that death, end of life, loss is very intimate. And yes, it's scary. Yes, it's sad. And it's extremely intimate, and that's, I think a valuable framework in, everyone anticipates grief, it, it becomes, you think about it. It's not, it's not something that, like, oh, I never expected this to happen. if you're caregiving for someone, you've had those thoughts.
And, I think that, appreciating the intimacy of it, will help kind of frame your experience around that. And so I think rather than viewing it as the, worst possible emotional experience, it may be the worst possible outcome, or the, the most challenging emotionally outcome, but also appreciating that it is, Truly the apex of intimacy on, on the caregiving journey.
Even if you're not there for that final breath of that final moment, there are so many little things that happen to lead up to that. I'd say, you know, please, if, if you have missed being with somebody that you love, that has, has passed just before you could enter the door of the or their room, whatever that might be, understand that you have played such a pivotal role in their lives and they in yours. And I hope that you, you understand that that's something to be cherished.
Absolutely. and thank you for, for clarifying that. It doesn't have to be that you're there at that moment. your physical presence is in, I would say, as important as your, general presence in the person's life.
Thank you, Evan. This has been a very, very special and I, I hate to use the word caring with it because I don't have the word around it to really give it a proper due diligence or the proper meaning. But I think it's, it's a very personal discussion that we all need to have with ourselves. And I really, really appreciate and thank you for being here today as my guest. And all the work that you do.
And for those who are listening, I will have a link to Evan's webpage so you can reach him and get more information on the work that he does. If you need some help, you can reach out to some of the work that's being done through Harvard and through Mass General Hospital up in Boston. And on that note, if you'd like to share a comment or a story that You think is important to us, to me and to others who are listening or just to
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