Dr. Kandi Schmidt 0:00
People that are living in families with a lot of chronic illness are really dealing with so much more than you ever think about. So some of the things that can help are first and foremost remembering that self care is not selfish. And so I have this quote that I say to a lot of my patients who are having a hard time with taking care of themselves because they're worried about their aging parents. And it's not my quote, but I got it somewhere and I say it it is. You're not actually required to set yourself on fire to keep others warm.

Dr. Regina Koepp 0:42
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.

Dr. Regina Koepp 1:25
When we talk about caregivers, we often think that caregivers are super healthy. But there are actually quite a lot of caregivers with chronic and life threatening illnesses themselves, and are in the role of caring for a loved one with a chronic and life threatening illness. So today, I invited my dear friend, Dr. Kandi Schmidt on the podcast to share her wisdom about this really really complicated situation of caring for an older loved one when you yourself have a chronic or life threatening illness. Let me tell you a little bit about Dr. Schmidt. Dr. Kandi Schmidt is the Director of Transplant Behavioral Health at Emory University School of Medicine, and is an assistant professor in the Department of Psychiatry and Behavioral Sciences at the Emory University School of Medicine. Dr. Schmidt specializes in the assessment and care of organ transplant patients and working with patients and their caregivers across solid organ groups, including heart, liver, lung, kidney, as well as with living donors. She's also co chair of the patient and family Advisory Council of the Emory Transplant Center, which works to ease the journey of the patient and family navigating the transplant experience through education, communication, advocacy, and collaboration. Now that you know who Dr. Schmidt is, let's jump right into the interview.

Dr. Regina Koepp 3:08
Thank you so much for agreeing to be on the show to talk about caring for aging parents, you offer such a unique perspective in caring for aging parents, because you work with a group of folks who have probably been cared for by their parents for much of their life, and then now might be in a position of caring for their parents, but also having pretty significant medical needs of their own. So can you talk a little bit about who you are, what you do and who you provide services for?

Dr. Kandi Schmidt 3:45
Yes, so I work at the Emory organ transplant center with patients who are seeking or have received solid organ transplants which covers kidney, liver, lung and heart or kidney, pancreas. I work primarily with adults and some young adults who are transitioning from trauma but all of them have struggled with coping with chronic illnesses throughout their life and have either received transplant or need a transplant.

Dr. Regina Koepp 4:20
And so what is the role of their parents providing care for them throughout their lifespan? What's that typically look like?

Dr. Kandi Schmidt 4:27
So many of the my patients were diagnosed at some point during their childhood or adolescence, early adulthood, and so their parents were ultimately caregivers for them throughout the journey of their illnesses, and this often extended well beyond the normal caretaking age for adult children because of the chronic illnesses. So many of the patients that I see have been dependent on their parents much well into adulthood in a lot of different ways. Some of them ended up living with them for a long time. Some of them are well into their 50s and still live with their parents or rely on them for financial support if they weren't able to work. Some of them have even received an organ or a piece of an organ from their parents.

Dr. Regina Koepp 5:24
Wow, what percent? Do you know what percentage of folks actually receive tissue or organs from their parents?

Dr. Kandi Schmidt 5:31
Oh, I don't know the general statistics. I have had. Gosh, I've had five or six patients in the last two years who have received an organ from one of their parents. The number is much greater for individuals receiving organs from family members in general, but Hmm, and that's kidney and liver that these folks have received.

When a Child Who Has a Life Threatening Illness Becomes an Adult and Begins to Care for their Older Parent

Dr. Regina Koepp 5:58
Great Wow. So now, if you're working with adult children, and they are largely often dependent on their parents, then what what starts to happen when the parent gets older, like goes into older adulthood and then there's your patient is the adult child, then what do the dynamics kind of look like then?

Dr. Kandi Schmidt 6:23
That's when it usually gets a little messy. It's pretty confusing for them to transition roles. There's a lot of emotional there's a sense of indebtedness, or that they owe them something. But then that comes with guilt and shame if they're not able to be as involved in their parents care as they'd like to be. There's a lot of variability depending on the siblings involved, but I tend to see a much closer bond between the aging parent and the adult child who had struggled with chronic illness throughout their life, so it the burden of responsibility often falls on that individual, even if they're not the best able to provide that care.

Dr. Regina Koepp 7:15
And then there's this dynamic that there is an indebtedness, but then a physical limitation. I imagine even financial limitations if...

Dr. Kandi Schmidt 7:24
A lot of these folks have often been dependent on their parents for financial support or supplementing things along the way. They also have a lot of physical limitations, not just in terms of strength and being able to transfer a parent but they have, depending on the chronic illness, they have their own energy and illnesses, energy issues and illnesses that interfere with how they're feeling each day. They also are immunosuppressed. So they're not necessarily The ones who should be taking their parents to the doctor or the hospital, or in lots of cases even to the grocery store. And then they also have cognitive limitations from the immunosuppressant medications so they don't always have the best memory to remember the appointments or help their parents manage medications.

Dr. Regina Koepp 8:21
Okay, now just define immunosuppressed.

Dr. Kandi Schmidt 8:25
Anytime someone receives an organ, they have to take anti rejection or immunosuppressant medications for the rest of their lives so that their body doesn't reject the organ. And those medications have a lot of side effects, but the primary one is that it's completely suppressing a person's immune system. So they're much more susceptible to catching bugs, colds, viruses, bacterial infections, anything and everything that's out there.

Dr. Regina Koepp 8:58
...for the rest of their life.

Dr. Kandi Schmidt 9:00
The rest of their life and then it's also much more difficult for them to fight that off. And so they just have to really adapt their lifestyle the best they can to avoid being in high germ infected areas.

Dr. Regina Koepp 9:17
Okay, so now, now this is a family then where the adult child has received care from their now aging parent, and in this role of indebtedness, or in this dynamic of indebtedness, and it's probably a strong desire to give back, all that's been given. And then, with all these limitations, like high risk of infections, even the smallest little infection could have a big impact because the person's on immunosuppressant medication that decreases their ability to fight off germs or viruses. And then the medication also provide has a side effect of cognitive side effects. So like a memory deficit, or what kinds of...

Dr. Kandi Schmidt 10:04
Usually mild memory deficits and attention or concentration problems, a lot of times patients will describe it as like a brain fog, or they're just not thinking as clearly as they see, which is very frustrating. Because it in some cases doesn't really go away. It varies depending on how much medication they're taking, which can vary depending on their health. Well, the long term after they've received the organ.

Dr. Regina Koepp 10:34
Okay, so then if they're foggy and the aging parent needs assistance with medications or managing appointments or managing finances or driving, it's gonna get messy, and maybe they're not the best candidate to help with that. And then there's guilt and shame because my aging parent did all of this for me, and now it's my turn and then I can't because of my medical problems.

Dr. Kandi Schmidt 10:57
Yes. Even in cases where the patient who's received an organ is pretty healthy and has their own family. Just the burden of their own medical appointments, how frequent they are and managing their own medications on top of a family, it really limits their ability to then also help their parent.

Psychological Impact of Having a Chronic Medical Illness While Caregiving

Dr. Regina Koepp 11:19
Yeah. Wow. So that's pretty sticky. So then what happens then psychologically for the adult child, the transplant recipient, like how do they tend to cope with that or kind of navigate those waters with these role transitions?

Dr. Kandi Schmidt 11:37
Unfortunately, they tend to experience like I mentioned a lot of guilt and shame which can lead to depression or anxiety related to being limited and restricted in their own bodies. Because mentally they want to be there and emotionally they have a strong connection with their parents. So it results in A lot of mood issues, and difficulty just navigating boundaries within the family. I see a lot of folks who tend to overextend themselves and then end up sicker medically and emotionally because they're afraid to say no or they feel like they're letting them down if they don't take them to that appointment, but then they end up subjecting themselves to more risks.

Dr. Regina Koepp 12:25
And then there's the emotional risk of failing your loved one and a time of need when your loved one's always been there for you.

Dr. Kandi Schmidt 12:34
And there are very messy dynamics with siblings who didn't have a chronic illness or need an organ transplant. They often feel like the patients have always been treated extra special and so then they have this resentment that they end up putting the burden of caregiving on the patient who's dealt with chronic illness their whole life because they feel like well, you always had mom's special attention, so you can take care of her now. Mm hmm.

Dr. Regina Koepp 13:11
And I imagine there's a familiarity with the healthcare system that maybe other siblings don't have. And with medication management that other siblings don't have with insurance claims, all of all of that language that's kind of acquired with exposure and experience...

Dr. Kandi Schmidt 13:30
With those kinds of things I suggest, you know, or I highlight, as these are the things you can help with that don't put you at risk. You can help call the insurance company or call the pharmacy, because you're already knowledgeable about that. And maybe don't go take them to the hospital. Let your brother.

Dr. Regina Koepp 13:50
So now, one of the things that stood out to me as you were talking was this experience that the person living with the transplant might have had limitations in their life for so long, and then get to a point where you have a transplant and there's a wish that life is going to be very different. And then after the transplant, you realize that now you're immunosuppressed. And you're going to be on all these medications that are going to limit you still And isn't that why I get an organ anyway, and now my life is like still limited, and then moving into a role of caregiving. And then there are limitations on life that come with caregiving in high demand potentially, and I just think of all of the challenges I don't know if people describe the transplant experience of kind of being hostage to their body, but their body is like holding this organ ransom and, and they're kind of being held hostage and like kind of caught. I wonder what that's like.

Dr. Kandi Schmidt 15:02
I often end up wording it like their body betrays them, no matter what they do no matter, you know, the people who are as healthy as possible and take their medications, some of them experience rejection later on years after the transplant. And so it often feels pretty hopeless and helpless. And so it's just a different version, like post transplant, it's a different version of being limited in a lot of ways.

Dr. Regina Koepp 15:34
So, some of your work is to help manage expectations of what comes after the transplant. Mm hmm.

Dr. Kandi Schmidt 15:41
That's a lot of it. And it's not very meaningful to really try and manage those expectations before transplant because people are in what I always call survival mode, and it doesn't matter. I mean, you can tell them the worst possible side effects and it doesn't matter because it's life or death. So Yeah, okay, sure I'll have stomach distress for the rest of my life, that's fine, better than dying. And then on the other side of it when, you know, it's months after, and they should be feeling better, but they're still nauseous every morning when they take their medications. And every evening when they take them again, it really starts to wear on them. And that's where the issues with just not feeling well, some days come in, and it's really unpredictable. And it's hard for even the aging parents but other family members to understand, well, why aren't you feeling well, today you got a transplant, you should feel better, right? And speaking to what you mentioned, in terms of having the knowledge of the healthcare system and the competency to navigate it. This is how the responsibility often falls on the transplanted patient. Coupled with the lack of understanding, why aren't you all better? I have one patient who cracks me up because he refers to his life as the longest trimester, first trimester ever, because he's always nauseous. And it's been years and so...

Dr. Regina Koepp 17:11
his morning sickness. Yeah.

Dr. Kandi Schmidt 17:14
And a lot of people have lost patience with him like, oh, you're always feeling ill. And the reality is, it really interferes with his day to day functioning.

Dr. Regina Koepp 17:24
Yeah, just thinking of the, you know, the term allostatic load, just the level of stress just is compounding on top of them. Um, I just imagine there are high rates of depression and anxiety. And it's so important to have somebody in your role to help navigate all of these complicated dynamics. And I just, I just imagine that the rates of depression or anxiety are very high.

Dr. Kandi Schmidt 17:55
Very high. And a lot of times the aging parent resists the role. Change as well. I mean, obviously, as they're losing their independence, they're going to resist that. But it's so unfamiliar to have that adult child be in charge, that there's resistance on both ends

Legacy of Chronic and Life Threatening Illness in Families

Dr. Regina Koepp 18:15
So as we were preparing for this interview, you had mentioned something to me that was really profound, which was that you see a lot of families where the aging parent might have the same chronic illness as the adult child that you're working with. Can you talk a little bit about that?

Dr. Kandi Schmidt 18:35
Yeah, so in many cases, there are diseases of the kidneys or the heart that run in families, I mean with all of the organs but I predominantly see it with the heart and kidneys, and sometimes the aging parent had received a transplant themselves sometimes one of the parents Had the disease and either received a transplant and died, like did not survive it or never made it to transplant. So there's these underlying complicated histories that obviously influence people's fears as they age. And when the aging parent has a similar disease and starts to decline, it can really invoke a lot more fear for the adult children who can logically realistically assume that that will be coming to them one day as well...

Dr. Regina Koepp 19:48
Their fate.

Dr. Kandi Schmidt 19:49
Their fate. So a lot of the time our work is about how to live your life fully. Now, before that, those issues start to limit your ability to live. And a lot of talk about exploring how fear can run away with you, if you don't get some control over it, and how your story might be different, it might not affect you in the same way. So you know that it will be that way. But there are a lot of issues even with some of the heart diseases that run in families where the aging parent is dying of the disease. The adult child has received a transplant and then their children have just been diagnosed with the same condition.

Dr. Regina Koepp 20:42
Oh my god, the tragedy, the legacy of illness and families and the tragedy that families have to live with. And so you're helping folks navigate the fear, create a life worth living, and then it also sounds like trying to find reasonable hope, in the midst of a lot of illness and decline and loss.

Dr. Kandi Schmidt 21:07
It's really difficult when someone has already received a transplant because it's known that your life is shortened. And so then, especially with kidneys, if they want to pursue another transplant, and how they might manage that, depending on their parents status, and I'm talking about diseases other than dementia, then when you add dementia, and it's really difficult to help people manage that fear, because they've already struggled with the physical limitations of their body and then if their mind goes, that's the ultimate.

What About Dementia and Chronic Illness (e.g., illnesses requiring organ transplants)

Dr. Regina Koepp 21:45
Is there a high rate of dementia and folks that have transplants?

Dr. Kandi Schmidt 21:49
Yes, there is. There's a high rate of the more general cognitive impairment and then the long term use of immunity suppressants and anti rejection medications, and then all of the just general wear and tear that the body takes, like as a result of unmanaged high blood pressure or diabetes that comes on as a result of the immunosuppressant medications like all of these factors, just compound and generally really contribute to the loss of cognitive functioning.

Dr. Regina Koepp 22:35
Yeah. And then depression and anxiety. As we know, chronic depression, anxiety also increases the risk for dementia, and so does Post Traumatic Stress Disorder. And so I wonder, you know, these folks are living with high levels of stress, so their cortisol levels are going to be high. And that has been shown to also correlate with the... I mean, okay, so we're talking about a lot of doom and gloom, and the cruel reality of what a lot of families living with life threatening illnesses are living with. Now, I want to switch gears because you were talking about something really important, which is how to make a life worth living now, and how to find meaning and hope in the life that you have. And so how do you do that then? When families legacies of illness and families are living with this cruel reality? How do you help them do that? How do you help them find meaning and hope?

5 tips for caregiving when you have a chronic illness yourself.

1. Self-care is NOT selfish

Dr. Kandi Schmidt 23:44
Well, I should also say it's not all doom and gloom because the individuals that survive these kinds of chronic illnesses are incredibly resilient, and they generally tend after having a life threatening experience of receiving an organ generally have a very different perspective and outlook on life and appreciation for life that allows them to live more fully in each moment, every day, and appreciate the small things that many of us who are healthy take for granted. So it's definitely not all doom and gloom.

2. You are not required to set yourself on fire to keep others warm

It's just very complicated. And people that are living in families with a lot of chronic illness are really dealing with so much more than you ever think about. So some of the things that can help are, first and foremost, remembering that self care is not selfish. And so I have this quote that I say to a lot of my patients who are having a hard time with taking care of themselves because they're worried about their aging parents, and it's not my quote But I got it somewhere and I say it, you're not actually required to set yourself on fire to keep others warm.

Dr. Regina Koepp 25:09
Whew, say it again, that is good.

Dr. Kandi Schmidt 25:13
You're not actually required to set yourself on fire to keep others warm. Really good. It's a good one. I don't know where I had found it, but I started using it and people... that really resonates with them and helps them shift their perspective to what they're doing and how they might be over functioning for a parent or whoever in the family and not taking care of themselves. So that's the one major take home I can't emphasize enough.

3. It's okay to say no and set boundaries

Along with that is it's okay to say no and set boundaries and the aging parents typically is pretty understanding of that. You don't have to say no to everything, as we spoke about a little earlier, there are ways that you can be involved and support them participate in caregiving without taking a major toll on your own health. People need a lot of help with that, because, well, I understand it because they feel so indebted to their aging parent. And they care for them so deeply because they have such a strong bond. They often don't want anyone else to be caring for them because they don't trust them or they know their parent might be uncomfortable. But the reality is that if they would, and when they do have conversations with their parents, about their own limitations, the aging parents are generally the most understanding because they've been there the whole way and fully understand the limitations. And so one question I often ask people, when they're clearly overwhelmed and trying to navigate, getting all the appointments in a day and picking up the groceries and running the errands and doing every thing I'll ask them is this what - if it's their mother, for example - Is this what she would have wanted for you in your adult life? Is this why she devoted her life to caring for you and making sure that you know, you stayed healthy and were able to flourish and thrive? And that's often a question that helps them just take a pause and think about it. Of course, you want to help your parent but they wouldn't necessarily, if you ask them, they wouldn't necessarily want you to stop living your entire life to care for them,

Dr. Regina Koepp 27:52
or set yourself on fire to keep them warm...

Dr. Kandi Schmidt 27:53
or set yourself fire. Yes. So those are The main tips that I really emphasize and come back to time and time again.

4. Ask for help

Another tip that I have is that it's so important to ask for help. These patients that I work with, like we mentioned, are the ones who know how to access resources better than anyone. And they often find themselves not utilizing the resources available, because they get so caught up in doing everything themselves and a lot of people are afraid to ask for help. But I see it time and time again. When they do the outcome is generally better. And that extends as far as making the decision to move an aging parent into an assisted living facility or a nursing facility where there are people available who understand the aging parents needs and Are reliably there to provide better care. So that goes along with some of the more difficult conversations I have with people about making those decisions. But people, as you know, all too well often don't understand, don't take the time to sit back and think about how their parent might be better off in a facility like that. They might have better care or a healthier environment, a safer environment. So a lot of times it's focusing on asking for help and using resources, using that grocery delivery service or having someone come in and clean your parents house instead of doing it yourself. Those little things that I then also usually follow with you're not abandoning them or disappointing them or letting them down. You're taking care of them. This is what caregiving looks like. It's not just doing everything yourself.

Dr. Regina Koepp 29:57
Oh, I really like that because we're giving messages about caregiving that are often very unreasonable. So, in society, we're given these messages like how could you move your aging parent into a long term care community? How could you? I would never, you know, people with the sort of righteous indignation like I would never do that, or, and then they get into the throes of it and they're realizing, oh, my parent with dementia is wandering, or my parent post-transplant has all of these health care needs, and I have all these health care needs, and I physically can't do it. And and I think in society, we could do a better job giving permission for lots of different styles of caregiving. So I really appreciate what you're offering is that it's actually not denying care, it might actually be enhancing care. And what's the point if you have two people who are needing care now because you're not prioritizing your own health? Were you're going to share another one or you...

5. Find Support & Connect with Others Going Through Similar Concerns

Dr. Kandi Schmidt 31:05
Yeah, my last tip is I just can't emphasize enough how important it is to find support to find other people who are navigating the same challenges as each patient is I have a support group that really is it's post transplant recovery. But ultimately what it is it's a group of individuals ranging from 45 to 65, who are transplant recipients, managing their own health issues, managing their own families, and then dealing with their aging parents who have a whole range of their own health issues. And a lot of what they really take away is just knowing that they're not alone in having to make these decisions or not alone and feeling guilty for not being able to do as much as they'd like to for their parent, but that doesn't mean that you don't appreciate or love your parent or there are other ways you can show them that.

Dr. Regina Koepp 32:02
Yeah. And just the support group for just this unique population of folks who have been living with the chronic and life threatening illness their whole life, and potentially their whole parents life as well, just these legacies of illness and families and finding your community like finding your core group of people that are living a similar experience that you can relate to. Okay, so let's go through your tips. So the first is...

Dr. Kandi Schmidt 32:34
self care is not selfish. It's if you don't take care of yourself, you're not going to be there to take care of them. Which directly connects to you do not have to set yourself on fire to keep others warm. And I would argue generally your aging parent wouldn't want you to do that. So it is okay to say no and set boundaries and it is okay to ask for help and bring in other services, resources, individuals who can help you care for your aging parent, and yourself. And it's important to find your own network of support of individuals who can relate to what you're struggling with.

Dr. Regina Koepp 33:20
Wonderful. And then if somebody does all of these things, what's the general outcome?

Dr. Kandi Schmidt 33:26
If they follow these tips and take care of themselves, they will ultimately find that they are healthier and happier, and so are their parents.

How Dr. Schmidt and I Know Each Other
Dr. Regina Koepp 33:37
Dr. Schmidt, how do we know each other?

Dr. Kandi Schmidt 33:40
You were my supervisor. My favorite supervisor, that late life depression group really set a great foundation for my work now.

Dr. Regina Koepp 33:54
That warms my heart, and I'm sure they would be so proud to know that. A few of our group members that - we don't run that group anymore - A few of them have died. But they were together. The late life depression group, for any body who's interested, was together for seven years. And it was a group of older men living with probably chronic depression anxiety and met twice a month for an hour and showed up on time in their seats ready to work. And the work there was connecting with one another and finding deeper connection with each other. And then it had the benefit of reducing depression, anxiety, and it was a beautiful group. So I'm so glad that had a lasting impact because...

Dr. Kandi Schmidt 34:37
My group is basically structured just after that.

Dr. Regina Koepp 34:40
Oh, that's so meaningful. That's so touching.

Dr. Kandi Schmidt 34:44
We've been meeting and we have a solid core group, who really cares about each other now, all had very different illnesses, different organ transplants, and many of them started by saying, you know, I'm not a group person or I don't know, I don't want to be in group with people who have had other organ transplants. And as it turns out, they can all connect, regardless of their differences. And that's a really powerful group.

Dr. Regina Koepp 35:10
Yeah, well Bravo to you. You're offering such an important resource with that community, that group, because you're really creating a community of caring, and connection and camaraderie. It's so important. Well, thank you so much for your time and all of your emotional and concrete resources. Great. Thank you,

Dr. Kandi Schmidt 35:36
You're welcome. Thank you.

Dr. Regina Koepp 35:38
And congratulations on your role and the good work that you're doing. I can't wait to learn more down the road.

Dr. Regina Koepp 35:45
That's all for today. If you liked this episode, be sure to subscribe and leave a review. subscriptions and reviews help people to find this show. As always, the information shared in this episode is for educational purposes only and should not take the place of licensed medical or mental health care. I'll see you next week. Same time, same place. Lots of love to you and your family. Bye for now.

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Be sure to subscribe and leave a review subscriptions and reviews help people to find this show. And here's why this is so important. You've heard me say it before, and I'm gonna say it again until older adults are included in conversations as much as middle aged adults and younger adults. But older adults are often left out of the conversation when it comes to mental health and wellness. So we have to do our part to include them. And you can do that by subscribing and leaving a review wherever you listen to podcasts.

As always, the information shared in this episode is for educational purposes only, and should not take the place of licensed medical or mental health care. I'll see you next week. Same time, same place. Lots of love to you and your family. Bye for now.