When Caregiving Calls

Melissa Smith

Well, I'll introduce you all to someone that I've gotten to know over the last couple of months, we've had several conversations and Aaron was a special guest in one of our recent caregiver wellness retreats. It was such an impactful conversation. A little bit more about our special guest. Aaron Blight is a speaker and a consultant on caregiving, aging and health care. And you've recently won a couple of awards and one as recent as this last week, I think an independent book award. And your book is called When Caregiving Calls. It's a guide as you care for a parent, spouse or aging relative. You also have a consulting firm called Caregiving Kinetics and it’s Caregiving Kinetics. That's K-I-N-E-T-I-C-S, and your website is a wealth of resources as well. I want to welcome you here today.  I've really been looking forward to this because I feel like your book is much like you are in person or at least online: super concise, practical, and also a lot of thought-provoking questions with a sense of curiosity.  Welcome.

 

Aaron Blight

That's exactly the kind of book I was hoping to write, Melissa.

 

Melissa Smith

I wanted to start out today, and I often asked our guests how they take care of themselves.  Because really our biggest mission with Caregiver Wellness Retreat is, yes, we provide resources for our caregivers, but most importantly, how are we taking care of ourselves so that we could care for another? And what do you do to take care of yourself?

 

Aaron Blight

Thank you for asking me, Melissa. I definitely like to exercise. I run. I go to the gym. And that allows me to just kind of recharge and remain healthier than if I didn't exercise. I also enjoy reading scripture and prayer and meditation. I've learned a little bit from you about meditation, and I think that's very valuable. But being able to engage in some spiritual activities also really helps me to keep focused and grounded and being in a position to try to help other people.

 

Melissa Smith

 I think that's a really important aspect. We had a recent guest, Dr. Jennifer Bute, I don't know if you're familiar with her work, but she is someone who has dementia. She's written a beautiful book. And we did a podcast with her not too long ago. She also talks quite a bit about the spiritual aspect and how that has sort of transformed her relationship with actually having dementia. I think it's some times before you came on, we talked about how the category you won your book award in. Do you want to say what it is?

 

Aaron Blight

The new one won a bronze medal IPI award in the category of aging, death, and dying.

 

Melissa Smith

Right. What a heavy topic. And yet, you know, we were commenting about how I wish it wasn't such a heavy thing. If we approached it with a sense of grace and we approached it with a sense of how essential that conversation is, just like spirituality is an essential conversation. Well-being is an essential conversation. Death should also be a part of our conversation. What I love about the title of your book, When Caregiving Calls. It's to me in reference to, it is not something you asked for.

 

Aaron Blight

Yeah, exactly right.

 

Melissa Smith

Yeah. It just comes upon you and your own story. You were caring for your mother in law who had cancer and then later developed some dementia. What was one kind of caregiving became a totally different kind of caregiving, and I'd love for you to speak a little bit about your own personal story and how that unfolded.

 

Aaron Blight

We're going back over 20 years now. I was relatively young when caregiving called me and my wife. Her mother was unexpectedly diagnosed with a brain tumor and she was given weeks to live, and they recommended immediate brain surgery. This was at Johns Hopkins University in Maryland.  They said that if she survived the OR, and if the surgery was successful, she might live six to nine months. She went ahead and had the brain surgery, it was cutting edge, innovative brain surgery at the time, and she moved into our home to recover from that brain surgery. She was supposed to stay with us for two weeks. She ended up staying in our home with us for two years. She had radiation, chemotherapy treatments while she lived with us. She had a second brain surgery. The cancer had spread through different parts of her body, but it eventually went into remission. She lived five and a half years after that original diagnosis. She was a miracle of modern medicine, but at the same time, she had cognitive decline for that entire time. Even though she eventually moved out of our house and into her own place, she was not able to be fully independent because of her cognitive challenges. We were constantly going over there to help her with all of her needs for the rest of her life. A few months prior to her death, the doctors said that they didn't know what they could do to stop or reverse her cognitive decline. My words, my words are she was going to become a full vegetable. She never reached that point because the cancer returned and came back with a vengeance. She did die of cancer, ultimately.

 

Melissa Smith

Throughout the book, one of the things that really strikes me that you come back to that is kind of almost an underlying theme is relationship. Whether in your chapter on emotions, you talk about getting support and then also just the many roles that we have, and I just think for a caregiver that this is huge. In fact, you have an entire chapter on the loneliness.  I don't know if you're at the current surgeon general, Vivek Murthy. I don't know if you're aware of this. Did you hear? Did you know? Yeah. So he actually did a tour. Of the United States and talked about loneliness.

 

Aaron Blight

Well, he's labeled loneliness as an epidemic in our society right now, that we are experiencing loneliness in epidemic proportions. There are different reasons for that, I think, in our society as a whole. Among caregivers, loneliness is a very, very common challenge because the more enmeshed that you become in caregiving, the more time that you spend in caregiving, the less that you're able to go out and interact with other people and do the things that you used to do and associate with the circles of friends and family members, extended family members that you used to talk to. You can have a growing sense of isolation and loneliness and that can contribute to further withdrawal, actually.

 

Melissa Smith

It is such a systemic issue and we don't, I think, often recognize how powerful. This is but also the other theme that I get from your book is just this thread of almost normalization of these things, meaning I'd love for you to speak a little bit about your chapter on emotions, if you're willing.

 

Aaron Blight

That word normalization. I love that word because I do think that we need to normalize caregiving, and we need to recognize that caregiving is ubiquitous; it's so common, but most people don't think about it until it's right in front of them. You're busy with your day to day life and responsibilities, and you may have in the back of your mind this knowledge that, oh, one day I might have to be a caregiver for a loved one. But you don't really think about it past that until that day arrives and then now it's in front of you and a lot of people are not prepared for it and family caregivers are invisible. They are, in my opinion, the unsung heroes of the long-term care delivery system in America. There's so much focus on the needs of the patient in the health care system, rightfully so. The patient is the one that's getting the treatment and the care. But the family caregiver is the one that is making sure that all of their needs are met at home. And the family caregiver provides not just physical support, but also emotional support and love and tenderness and patience and presence. All of these things are what the family caregiver offers their loved one.  They do it because of love. They do it because of duty. They don't seek fanfare. They don't even really seek help for themselves, even though this situation has been thrust upon them.  It can be overwhelming the needs of the care receiver as those needs grow. They are relentless. Often family caregivers feel alone. They're overwhelmed.  I do think that they deserve to be recognized and supported more fully. On the emotional side of it, Melissa, you know, caregiving is an emotional roller coaster.  When I was writing my book, I mention this in the emotions chapter. I did a list. I mean, I did a Google search on list of emotions, and I discovered that psychologists often use lists of emotions with their patients to try to help their patients process their feelings. By the way, lists of emotions online, they are copyrighted. I would have thought, you know, I I didn't know that I actually went to an organization that had a list of emotions online. And I asked if crediting them if it would be OK if I cited that in my book, and they said, no, I was like, OK, well, others come up with my own list of emotions.

 

Melissa Smith

They're human and universal.

 

Aaron Blight

The list of emotions and When Caregiving Calls is actually more comprehensive than that one. There are one hundred and forty-eight emotions, and the caregiver is invited to go down the list and circle ten emotions that they feel the most frequently in the caregiving in the caregiving role. As I was compiling that list of emotions, I realized that I have heard caregivers express all of those emotions at one time or another.  Some of those emotions are happy and euphoric.  Other times they are they're depressed and anxious and negative. I think that getting back to your word, normalization, Melissa, I think it's so important for caregivers to realize that those negative emotions, those anxious emotions- it doesn't mean that you're a bad human being or a bad caregiver, that's just part of caregiving. It's very natural. It's very normal. There's nothing wrong with you if you're feeling negatively about the situation with your loved one. There's no judgment here about those negative emotions. They just exist. I felt them with my mother-in-law. I try to be very open with that in my in the book, because on the one hand, I wanted to be there for my mother-in-law. I wanted her to live in our home. I wanted to provide all of the support that she needed. I felt that she deserved that. I loved my mother-in-law. She treated me wonderfully from the moment that I first started dating her daughter. I was a son to her. She actually kept a picture of me by her bed until she died in a Halloween costume. But at the same time, I resented her being in our home. I hated that she was there. And I felt this internal conflict about the whole situation. When she was in our home, I grew to resent it so much that I actually got to the point that, you know, I'd have a long day at work and I would come home from work, tired, and I'd sit down at dinner with the rest of my family, my wife and kids and my mother in law was right across the table from me every single night. And I I got to where I could not look at her. That's how I that's how negatively I felt about the situation, but she didn't ask to have cancer, I'm sure she didn't want to be in this situation either. I'm sure that living with us was not her ideal situation. And so these emotions that I was feeling, I had never felt things like this before. They were disorienting for me. And I did not do a very good job as a family caregiver with her because I just didn't have a clue. And but it happened to me at a young age, you know, I was twenty-nine years old, she was young and I've had over 20 years to work with family caregivers to study caregiving. And I understand it's so much better now. And that's why I wrote the book, really, because I know that family caregivers are feeling these things and it can be a lonely road, but they don't have to be alone and they don't have to struggle in the same ways that I did.

 

Melissa Smith

I so appreciate just the transparency with that. And I'm sure I'm seeing a few other caregivers not it's just that that is such a reality and we don't often vocalize it or have or feel we have a safe place to vocalize those frustrations. And so I know one thing you mentioned in your book and in fact, one of the things I really appreciate about it is you do the questions for reflection at the end. And I and I hope and I would encourage those caregivers that that do get the book that you really spend time with, that I know you encourage it. It's so easy just to scam, but there's so much value in being able to sit with when that emotion pops up. There's a Jetson Brewer is a doctor who has written a book. You wrote a book called The Mind Craving. And there's another book on anxiety that he wrote. And one of the things he talks about in it is this idea of how does how do we handle emotions? How do we deal with anxiety? How do we deal with the habit? Kind of a similar thing. It's like there's a trigger and then there's the behavior and there's a response. And what we do is we sort of just think we have this behavior reaction and we get a chemical response out of it. But then we loop back around to it over and over again and that and it doesn't change the way to shift that. Is to be with it physically, experience it semantically, and one of the ways your suggestion in terms of journaling and other ways that people kind of process or be with specific emotions, that's the way through versus. Yeah. Versus letting it be this loop.

 

Aaron Blight

Absolutely. In all those loops, I think, are a result of our own schema, that our own way of thinking about the world and seeing the world and the patterns that we've experienced in our lives. And we it's our taken for granted assumptions about how the world works. And we but we also know through research and learning. And by the way, I'm not a medical doctor. My doctoral degree is in learning. But we know that transformative learning can happen through intentional reflection. And so that's why those questions are in the end of every chapter in the book, because if you really do intentionally reflect deeply on those questions and apply them to your individual situation, you're going to gain insights about yourself, about your loved one, about your relationship with your loved one, about the world around you. And it will allow you to experience caregiving in a different way. I was on a we had a session a month or two ago was this was in April. It was a group in New Hampshire that read the book. And we had a follow-up discussion like this online, and there is a lady there, she was probably seventy-nine, eighty years old, something like that. That's just my guess. And she said that she read the book and she engaged with the questions for reflection with journaling. She said she wrote every single question she thought about and she spent a lot of time writing these answers. She had been caring for her husband for six years. And before that, she had cared for her mother for 14 years. So 20 years she spent caregiving. And she said that she has never, ever learned as much about herself and about caregiving as she did by journaling her responses to those questions, and she said she said, I don't want to share what I wrote with anyone. So that's totally fine. It's not for us it's for you. This was for you. And I could see that she was a changed person from that process. And so that's really what I hope people do. I mean, the chapters, they're informative, they're helpful. They're concise, as you said, and practical. But if you really start to dig into your own experience, sometimes those prompts, those question prompts will cause you to think about something that you never really considered before.

 

Melissa Smith

Absolutely.

 

Aaron Blight

Now, in my situation, what does this mean for me?

 

Melissa Smith

Exactly. And coming at it from because it's so easy to come at it from a more of a judgmental perspective or like like, oh, I could have what I should have. Right. But instead coming from a sense of curiosity. So and when you do that, it takes a lot of the anxiety and some of those negative emotions and lightens, as you know.

 

Aaron Blight

That whole judgmental piece of it. You know, we were talking earlier about just death and dying. And I think we need to also get away from judging people. And I think that sometimes caregivers, people, people for our judgments about what should or should not be done, caregivers are told often by extended family or you should do this, you should do that for your loved one. And you know what? They haven't walked in your shoes. Hopefully, they're just trying to help. You know, those are those suggestions are delivered with a sense of love and with good intent. But as caregivers, there should be no judgment. And it just is this is what is happening in your life today, and sometimes caregivers are in denial. About what's happening. They don't want to recognize the reality that they're in, or sometimes they just get so busy they occupy themselves with busyness that they don't and they don't take time to reflect and to really make meaning of what's happening and process deeply the emotions that they're experiencing and things like that. So busyness can just be a cover-up for some deep-seated issues that you're having. And so the book really is is an invitation with no judgment whatsoever for you to explore your experience and to understand it better.

 

Melissa Smith

I think I really appreciate the principle of making meaning. And one of the, you know, what you just mentioned in terms of nonjudgment and family members haven't walked in your shoes is also another theme that you kind of pick out in terms of how roles are incorporated throughout all of this as you're looking back, because this is kind of this whole book really is a reflection of you kind of a conglomerate of what you've learned. If you had to distill that down into, you know, maybe someone who is fresh to caregiving or that's in your experience, how or maybe someone who isn't even a caregiver yet, what are some of the things that you would suggest for them? A couple of key takeaways that you've learned.

 

Aaron Blight

I think that one is that caregiving changes family relationships and in the relationship chapter, I do talk about some gerontology research from Gerontologist Rhonda Montgomery and Carl Kozlovsky and I discovered their work years after my mother-in-law passed away when I was doing my own doctoral research. And I was blown away by how they conceptualize family caregiving. And it gave me so many insights as to why I struggled as a family caregiver and why the families that I worked within my home care company were struggling. And it really has to do with the nature of the relationship between the caregiver and the care receiver. And so historically, if you're a family caregiver, you've always had a family role in that relationship. Let's say that maybe if you're a wife caring for a husband, historically wife has been your role and wife has all kinds of meaning and connotations. And the way that you interact with that man has always been wifely. Or if you're a child, an adult child, let's say that you're a daughter or son and it's your mother that you're talking about. Your relationship with your mother has always been marked by being the child of that woman. And so that historic relationship is very personal. Its very important to you, but it's defined so much of who you are in relation to them. And when caregiving now enters the picture, your loved one’s needs have arisen and because of the changing health conditions of your loved one. The nature of your interactions with your loved one will change. You'll start to interact with them differently. You'll start to think about them differently. You'll start to do different things for them and with them, the dialog will change. And so over time, as your loved ones’ needs grow and increase, you have to respond in kind because caregiving is a process of continual adaptation. You're always adapting to the needs of the care receiver. And so these roles, this historic family role is being crowded out by this new caregiver role and so as a caregiver, the things you're doing are different, the nature of your relationship changes, and it can be hard. It can be very disorienting for you to say, well, who am I now in this relationship? I don't think about my husband or my parent in the same way anymore. And I think they don't think about me in the same way either. Like, they're depending on me for things differently now. And so that's what happens when caregiving is introduced into the relationship over time. And so family caregivers can really struggle. Over the long trajectory of caregiving, just processing this whole relationship dynamic.

 

Melissa Smith

Well, I think this is huge. And I and for those listening, you could probably relate to even just a time in which you like as a young adult leaving home. Right. So that separation and sort of navigating the distance and navigating a new kind of relationship with your parents or whoever it is you were you grew up with and applying what you learned with that to this idea of caregiving because it is just another phase or a season. And one way that's really helped me is because I've actually never lived in the same city as my father. And when my dad was caregiving for my stepmom, I was never there. I would only come back a few times a year and see the progression. And now I live a mile from my dad. And woah is it different! It's like I feel like a teenager all over again. It's like, oh, new boundaries and a whole new like, you know. And sometimes I feel like, you know, he still sees me as that teenager. So how can I navigate this in terms of just a broader perspective to prepare me for another caregiving role? Can I change how I view things even if the other person doesn't? Can I have a more expansive view? Can I instead of rejecting who I am as a daughter or rejecting you, I like if I'm caring for my husband, for example, instead of rejecting the wife role, can I instead look at it like, oh, like there's more. There's more.

 

Aaron Blight

And that's that is how a lot of caregivers that continue in the role over the long haul, that's how they hey do it, they redefine what that family role is. So if it's, let's say, using the example of a doctor caring for her father, you might say, well, historically, being a daughter has meant this. But now, because of my father's age or his health conditions or his stage of life, being a daughter encompasses caregiving responsibilities. And I'm still a daughter I'm just a daughter in a different way. And you're in that way. You're kind of assimilating your definition of who you are in a relationship to, to allow yourself space to continue doing these things and not feeling like it's an identity conflict for you and the relationship. And that's what Montgomery and Kozlovsky talk about. They talk about identity discrepancy, identity, conflict, where if there's if you're feeling dissonance, you're feeling a disconnect between who you are today and the relationship because of caregiving compared to who you think you should be or who you have historically been. That's a disconnect. And that's an identity discrepancy in the relationship. And you have to somehow come to terms with that. And there really are three ways that you do, and this is way easier said than done, Melissa. Is this going to be one of the hardest things that you do? But and we talked about this at the Calgary Wellness Retreat, actually, one, as you can redefine the meaning of being a daughter or the redefine the meaning of being a wife to encompass what you're currently doing as a caregiver. A second thing that you can do mentally in your mind is say, OK, I'm stepping away from that family role and I'm transitioning I'm pivoting into this caregiver role that's emerging. And I'm doing it because I love my loved one and because I have this historic relationship with them. I acknowledge that that historic relationship is changing now. And that's OK, I'm going to just pivot into this new relationship. Or the third way that a lot of family caregivers handle it is they offload the tasks of caregiving that are causing them the identity conflict that are causing them the dissonance. So they outsource caregiving to others to formal care providers. And there is no right or wrong way of handling this. There's no judgment here. It's not like this one is better than the other one. It just is. And you as a family caregiver need to be. The most important thing is that you are OK with how you're addressing your loved one’s needs and you can feel good about yourself in the relationship.

 

Melissa Smith

Yeah, well, there's one thing that you talk about in the book, caregivers do better and caregiver care receivers also do better. So this idea of when you know, well, maybe you can explain it much better than I do.

 

Aaron Blight

I think when caregivers do better care, receivers also do better. So the concept is the better he better state of mind, the better physical shape that you're in, the better your mentality and your mindset is as a caregiver, the happier that your loved one will be as well. You're going to do a better job with them. Your relationships are going to be better and you're going to be better able to fulfill the needs of your loved one.

 

Melissa Smith

Absolutely. And I think that really parallels what you just mentioned earlier. It's you have to make the decisions that are right for you in that moment as the caregiver and release whatever judgment, whatever everyone else is telling you and compiling into the situation. I think it's just to listen. I think you even mentioned that in your book. Just listening doesn't mean you have to take it.

 

Aaron Blight

Right. You know, one thing that sometimes comes up, Melissa, in this is this decision about whether or not you are going to place your loved one into a long-term care facility. Yeah, and this can be a very gut-wrenching, heartbreaking decision. And so often people think, well the decision about placing a loved one is really based on their needs, their health conditions, and then also the facilities, amenities and the facilities services. And those are two important parts, your loved ones needs and the facility services. But there's really a third component here, which is the capacity of the family to meet those needs. And if your loved one’s needs are exceeding your capacity to meet them you can't run yourself into the ground as a caregiver. You have to realize that that part is the part that a lot of family members don't even want to acknowledge. But as your loved ones’ needs increase and get to the point that they are unrelenting. 24-7, you're unable to sleep, you're unable to do anything for yourself because your loved ones need to become so intense, and you're trying to do it all alone-You can't do that. I mean, they have teams of people in facilities to meet the needs of folks with more intensive health conditions. And it's OK if you reach that point that you can't do it all by yourself. It's important to recognize that.

 

Melissa Smith

Well, I think it's also important to recognize that this is also a very privileged conversation that we're having. Not everyone has the access to or the privilege to be able to afford or whatever their circumstances are. So I think it's super important just to simply acknowledge that.

 

Aaron Blight

And there are, you know, for folks that that are Medicaid does cover. There are public programs as well that will allow for long-term care facilities.

 

Melissa Smith

Exactly. So I was going to say, I think for those that that is a concern for there is some resources available and we have several of those on our website and people are welcome to email me. I'm happy to share resources. And I think it also goes back to what you talked about in several of your chapters, just asking for help, making those lists of people you can count on or seeking out people that you really probably may not even be aware of yet, who could possibly help you that don't have a lot of financial cost attached to that.

 

Aaron Blight

So one of the, when you’re talking about people like that, Melissa, one group that pops into my mind is caregiver support groups. And so if you're a caregiver and you have not reached out to a caregiver support group, you can find those online or you can find them in your local community. But these are people that I know with dementia care. There are a lot of Alzheimer's support groups, but there are Parkinson's support groups. But these are people that are caring for loved ones just like you. And they are in the support group to try to learn from each other, to provide moral support. There's understanding. Deep friendships are made in these caregiver support groups and I would not underestimate the impact that a caregiver support group could have on you.

 

Melissa Smith

I completely agree. I know in our family's case, I've had this conversation with my dad a few times, like, why? Why didn't you? Because he didn't go to a caregiver support group and in fact, didn't attend one of my retreats. So there was this idea that you know, he was like, I couldn't handle this thing. Other stories-mine was was hard enough. And I think it's OK to acknowledge that you're in whatever season of the caregiving you're in, that that's OK as well. And that there are different types of support groups, everything from just learning coping skills and meditation so you're not actually hearing a lot of other people's stories to preparing to plan. There's just so much support now that it doesn't look the same as it did, you know, 10 years ago when my dad was doing this. 

 

Aaron Blight

Right. Yeah. I think the Internet has really had a fundamental impact on that because there are so many different types of groups that you can find online now. And the participants report a lot of value in those different communities.

 

Melissa Smith

Absolutely. Well, I am so happy that you were able to join us today. I feel like we could probably talk quite a bit longer from the richness of this. I'll encourage folks to go back and listen to the Calgary retreat, because you definitely have some incredible insight that was just immediately impactful. One caregiver just wrote that she was just moved to make a big a big change in terms of garnering support for herself and for her loved one and that was huge. So I am so, so grateful that you were able to join us today, and I'm excited to continue this conversation a little bit offline. So if you are watching on Facebook, I'm so glad that you came. And if you're also listening to our podcast. Thank you. We hope that you will join us next time live because we do this on Zoom. We invite our caregivers that are on our mailing list to join us. There's no catch and no hitch it just means that you get a little extra couple of question times with our guest speaker.