Aaron Blight – When Caregiving Calls, Caring for a Parent, Spouse, or Aging Relative

Dr. Aaron Blight, Ed.D., is the author of a new book, “When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative”, which was just released last month. Dr. Blight is the Founder of Caregiving Kinetics, a consulting firm dedicated to those who care for the aging population. He’s also an Adjunct Professor at Shenandoah University. He has served as a family caregiver, home care company owner, caregiving scholar, and leader at the Centers for Medicare & Medicaid Services.

BOOKLIFE REVIEW: 
Editor’s Pick: BookLife Reviews named When Caregiving Calls an editor’s pick. 
From BookLife Reviews: “This outstanding guide will be a lifesaver for anyone saddled with these immense responsibilities and seeking peace of mind…[C]aregivers for loved ones will benefit greatly from this empathetic and informative guide.”

Topics:

• How did caregiving enter your life?
• Why did you write your new book, “When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative”?
• How does your book assist caregivers?
• What is one important piece of advice you’d give a family caregiver who’s listening?
• What do you do as a speaker and consultant with Caregiving Kinetics?

Hanh Brown: [00:00:57] I’m excited to welcome dr. Aaron Blight. Dr. Blight is a lecturer author consultant in a formal care giver himself.

Dr. Blake. Thank you so much for being here to share your experience with us, both personal and professional.

Aaron Blight: [00:01:28] Thank you Hanh, for having me. It’s a pleasure to be here.

Hanh Brown: [00:01:32] Wondering if we could start by having you share a little bit about yourself, where you’re from your work experience and you’re working on right now.

Aaron Blight: [00:01:41] I live outside of Washington DC and the Northern Shenandoah Valley of Virginia. And I own a company called caregiving kinetics. I do speaking and consulting in the caregiving space. I talk to groups all over the country about caregiving, both paid caregivers, working in care organizations, as well as family caregivers.

[00:02:02] Who are helping their loved ones at home. In my career previously, I owned a home care business and provided help with activities of daily, living to seniors all over the 3000 square mile territory. And I used to work at the centers for Medicare and Medicaid services. I teach a couple of classes at Shenandoah university now, and I just wrote a book, which I’m super excited to share with you called when caregiving calls guidance as you care for a parent spouse or aging relative.

Hanh Brown: [00:02:34] Great. Thank you. I’m excited to learn more about that too. So your big passion point that runs throughout your career is caregiving. And how did caregiving. Enter your life.

Aaron Blight: [00:02:46] It goes back actually more than 20 years, I was working at the centers for Medicare Medicaid services in the federal Medicaid program.

[00:02:54] I was in the disabled and elderly health programs, group writing policy for disabled and elderly people in America. But if I’m being honest, Hanh, I didn’t really know too much about what it meant to be elderly and disabled back then. All of that changed very quickly when my mother-in-law was diagnosed with cancer.

[00:03:13] She had a brain tumor and our lives were upended immediately. We became her family caregivers, and we fulfilled that role for her for five and a half years. And it was really a turning point in my life because it helped me to understand and learn so much about caregiving, what it means, not only for the individual who needs care, but also for the entire family who are serving as caregivers.

Hanh Brown: [00:03:39] I know many people enter a caregiving role, but very few choose to make it a career out of it. When did you know that you were going to dedicate your career to caregiving?

Aaron Blight: [00:03:50] It was probably a year or so after my mother-in-law passed away, I was in a different role at the centers for Medicare Medicaid services.

[00:03:59] I was the director of the division of financial operations for the Medicaid program. And I’m really not a finance person, but that’s where I was at the time. And my wife suggested that since her mother had passed away, things were a little bit different in our lives. Maybe it was time to think about owning my own business.

[00:04:18] And I immediately thought of home care because my mother-in-law had been a home care client. The last couple of months of her life, when she was in hospice care. There was a non-medical home care company that supported her during her final days. And they were a godsend for us. We wish that we had signed up with them earlier.

[00:04:39] And because of that personal experience, I really gravitated toward the home care industry. And so I took the leap and became a, an owner of a, a home instead senior care franchise. And my goal was to help families that were just like mine. And over the course of the years, my company was able to help thousands of elderly people and their families.

[00:05:05] And through that experience, I got to see firsthand, so many of the. The common challenges that families face in caregiving, but also the unique experiences and perspectives that they shared. And I learned a lot about caregiving. I also decided to go back to school and received my doctoral degree in which I studied caregiving as a phenomenon of social science.

[00:05:30] So I’m not a medical doctor. I’m a doctor of learning. My doctorate is actually an education, but caregiving teaches us a lot about ourselves, about the world, about our relationships with others, about what it means to be a human being. I’m happy to share that knowledge now.

Hanh Brown: [00:05:48] Bless you for your heart, your dedication and teaching and sharing your knowledge and caregiving very much needed.

Aaron Blight: [00:05:59] Thank you. I do think that it’s needed. I know that a lot of family caregivers find themselves. As you said in this situation, they weren’t. Seeking it, but they also have a real hard time dealing with it. There are a lot of reasons for that, but caregiving can be very disorienting and very challenging in your life.

Hanh Brown: [00:06:18] I agree. I’m speaking personally here. I think some of the words that come to mind are the emotions that we go through is I think confused and maybe inadequate and shameful, because there’s so much that we don’t know. And we get into this mode that we’re not ready. We’re not adequate. To care for our loved ones.

And then the frustration and the shameful it’s like, where do we go to get help? It’s not something that is mainstream or people brag about. It’s very. Under their table. Maybe I don’t know what the right word is. There’s not enough awareness and education around that.

Aaron Blight: [00:06:54] Absolutely. Right on. And that’s one of the reasons that I wrote the book is to try to help family caregivers that experienced those feelings.

[00:07:02] Those are very normal. And even though you have in the back of your mind, this awareness that you may become a caregiver one day for a loved one. You don’t really focus on that because you’re so busy with all of the other things in your life, all of your day-to-day responsibilities. And so often it’s not until caregiving is just staring at us that we realize that we have to do something.

[00:07:27] And some family members never even really think about themselves as caregivers. The book helps caregivers think about this process that they’re going through. Think about the tasks that they’re performing for their loved one. And wrap their heads around. What does this mean for me in my life?

Hanh Brown: [00:07:45] I sure wish there was this book five plus years ago when I was going through it personally, again, a lot came to my mind and it was not readiness.

[00:07:56] Like I said, it was more denial. Frustration and shameful because when you’re facing, let’s say dementia on the horizon, you’re really so unprepared. And I think that’s one of the driving force behind the podcast is to bring folks like yourself, educate, share, and inspire folks who are on that journey of caring for their loved ones.

[00:08:20] That it’s something to celebrate when you can get to that place. I think that would be, there’ll be awesome because it doesn’t matter what age you are in life or perhaps acuity level. You ought to honor celebrate and respect that with dignity.

Aaron Blight: [00:08:34] I agree. I think caregiving allows us to appreciate the present moment, what we have together with our loved one, the time that we have left with them.

[00:08:43] And to your point about. Not being prepared to be a caregiver. Most family caregivers would agree with you. And even, you know, I’ve worked a lot with health care professionals, physicians and nurses who do this with strangers, but when it comes to their own family, they always tell me it’s very different.

[00:09:03] I wasn’t prepared for the emotional roller coaster that caregiving is presenting to me. As I’m taking care of my mother or my father or my husband or wife. And so one of the things that I think is really important to realize is they don’t have a handbook to be a family caregiver. It’s like being a parent.

[00:09:20] Right, right. You are put into this role and there often are no easy answers. And so it’s really through a process of trial and error through practicing. That you grow into the role of being a caregiver. And part of that role involves adapting to your loved ones, changing health conditions over time. So that’s also a very challenging part of being a caregiver because you start and your loved one’s condition is at a certain place, but six months from now, 12 months from now, it’s going to be different.

[00:09:55] And as a caregiver, you need to adapt to their situation and their. Their health challenges. So it’s not a static effort. It’s something that you’re constantly learning over the course of the caregiving experience.

Hanh Brown: [00:10:10] So true adapting to the changes in your loved one’s life. And I think another component is adapting to the family dynamic, right?

[00:10:20] Often decisions have to be made and how to care for your loved one. And to reach to that consensus about the, how can be challenging because the more family members you have, the more it can get really sticky.

Aaron Blight: [00:10:34] Absolutely. So in when caregiving calls, I do talk a little bit about there’s a chapter on family.

[00:10:41] And on those different relationships that exists within the family. Oftentimes there is a primary caregiver or maybe one person who is taking the lead on caring for the elderly relative, but other family members also have a role to play and input and decisions can be made by the entire family with of course, the input of the loved one.

[00:11:05] It’s so important to recognize. Their wishes, their goals, their aspirations, their desires, and their decisions about the type of care that they want to receive, who would be delivering that care. And how are you going to pay for that care? That’s another important decision to be made. So the family often is involved in these decisions with the input of their loved one.

Hanh Brown: [00:11:29] Okay. Let’s talk about the book. Can you tell us about your new book and. Why did you choose to write it?

Aaron Blight: [00:11:36] Sure. About three years ago, I accepted an unsolicited offer to sell my business, my home care company, and I wasn’t planning to do that, but the offer came and I did, and then I’ve asked myself, what should I do now?

[00:11:50] And I realized that I really need to go out there and help support caregivers everywhere. So I started speaking to caregivers in different places. And this book was a result of that, a way to try to reach more caregivers and engage them in a learning process about their care experiences. So the book is written, it’s divided up into 18 chapters.

[00:12:17] Each chapter is pretty concise. It’s easy to read and what I’ve heard from so many caregivers that have read it is that it’s very relatable. These are chapters that are very common in the experiences that caregivers go through. And I’ll just Hanh, I’ll just read to you real quick, quickly the titles of the chapters, and they’re just one word chapters, the title, the titles, conversation, roles, relationship, family, time, stress, work, body, mind.

[00:12:53] Home independence, loneliness, emotion, providers, skills, rewards, faith, and next steps. All of those themes, like I said, are very important and caregiving. And as I was writing the book, I kept thinking about the caregivers who would be reading the book and asking myself, what do they need to really benefit from this experience?

[00:13:24] It’s one thing to read a book and gain information, but it’s another thing to be transformed by a book. And. As we said earlier, this is there’s no easy answers to caregiving, and this is not a comprehensive encyclopedic manual. This is more of a guide, but after each chapter, I decided to incorporate questions for reflection.

[00:13:50] And these are intended to allow the caregiver to think about what they just read and then reflect upon how those things apply to their own life, to their own caregiving situation. And even write and reflect a little bit about that. And in adult learning, this is how we learn through intentional reflection.

[00:14:12] One of the early readers of the book character ever, she told me, she said, I really liked the quiz for reflection, but I did not like the questions for reflection. And I asked her, why is that? I guess I just really didn’t want to think about some of those things. But I know that I had to think about them.

[00:14:34] That’s precisely why those questions are in there because sometimes with caregivers, we as caregivers, we are, we don’t want to think about things. It’s easier to just ignore it or push it under the rug, not think about it, but if we confront the realities of caregiving, Head on as we understand them and we gain insights about them and we’re intentional about them.

[00:14:58] We can be more proactive in our caregiving experience. And so that’s, I think a very important part of the book.

Hanh Brown: [00:15:08] So you really get the reader, their caregivers really dig in deep in their hearts and their soul to understand all these components that come with caregiving that maybe it’s really hard to dig in for them because it’s very emotional.

Aaron Blight: [00:15:26] It is. And often there’s, you’re just so busy with the tasks of caregiving with the to-do list, the checklist that you really don’t. Reflect deeply about what it’s, what it means for you and your life and what it means for you and your relationship with your loved one, which is changing because of caregiving.

[00:15:45] And you’re really, we met, talked about your relationship with other family members, and we talked about your sense of who you are. Maybe you have a job at work and that you’re finding challenges, managing caregiving and being employed at the same time, but then all of those emotions, the roller coaster of emotions, one of the exercises and when caregiving calls is there’s a long list of emotions in the book.

[00:16:08] And the caregiver is invited to just look at that list of emotions and circle 10 or 15 emotions that describe how they feel about caregiving. And just doing that might bring some awareness as to how caregiving is really affecting you. And it can be very insightful.

Hanh Brown: [00:16:29] When reading your book, you don’t feel so much that you’re alone because a lot of the content that you laid out, cause the person reading to dig in deep and understand what they’re doing, the emotional side of it.

[00:16:45] That is a journey. And perhaps even pause. And think about the relationship with their loved ones with their family members, how that’s changing. And I think another component is so important is to stay in unify with your siblings and your family, because that’s what you’re going to need when your loved one leave you.

Aaron Blight: [00:17:08] absolutely. You’re exactly right, Hanh.

Hanh Brown: [00:17:11] Okay. It’s a tough topic. It’s hard to dive in deep. Without even digging in deep for yourself because everybody has their own journey. It’s a tough one. It’s a very necessary message, but it’s hard not to be emotional when sharing it because that’s what drives you to even speak and write about it.

Aaron Blight: [00:17:32] That’s right. Can I maybe try to say something about that again? I do think that one of the most important messages in when caregiving calls is that you’re not alone. And caregiving can be a lonely road. It can feel very isolating. You can feel yourself starting to withdraw potentially from social circles that you used to run in because your loved one needs you and is taking up more and more of your time.

[00:17:57] These are all very normal outcomes that are associated with caregiving. But even though you may feel alone, I think that when caregiving calls helps you to realize that you’re not alone, there actually. Many caregivers out there that are experiencing similar things. In fact, a recent report that came out earlier this year from the AAR P and the national Alliance for caregiving indicated that 53 million Americans are in some kind of caregiving role in 2020.

[00:18:28] It’s a very common experience. That’s out there, but it’s not readily acknowledged in the world. And caregivers don’t necessarily receive the support that they need. So the book also encourages caregivers to seek out the support that they need, and that support can be really in one or two different areas.

[00:18:50] One could be sharing in the tasks of caregiving, finding other people to assist you in caregiving tasks. Can be extremely helpful for caregivers. The second way of receiving support is for you to receive the emotional support that you need. And that can be done with a friend who is willing to just spend some time and listen, it could be through counseling.

[00:19:13] It could be through caregiver support groups, where you get together with peers and share your experiences. But it’s so important that you seek out the help that you need, rather than just thinking, Oh, I have to shoulder this by myself. It’s not a sign of weakness to get help. It doesn’t mean that you love one, that you love your family member who’s receiving care any less because you get help.

[00:19:39] It’s really an acknowledgement that for you to be your best self for you to be the best caregiver that you can be, you need some support too.

Hanh Brown: [00:19:49] Absolutely. This ought to be a book that in families with parents loved ones. That are aging right at home at assisted living memory care for the staff. Cause I think it’s so important.

[00:20:05] So many aspects, so many components that if you’re not geared up, it can wear you down. And then on top of that, you add COVID over it’s it’s monumental.

Aaron Blight: [00:20:16] Well COVID I think has if there’s any positive that’s come out of COVID when it comes to caregiving. It’s that I think as a society, our collective consciousness.

[00:20:26] About caregiving has been elevated. The needs of caregivers have been highlighted more than ever. And just recently the Rosalyn Carter Institute for caregiving released a report about caregiving during COVID-19 and the report revealed that 86, 3% of family caregivers are feeling more stressed because of COVID-19 than they did before.

[00:20:52] And why are they stressed? The biggest, most obvious reason is the risk of infection. They’re concerned about getting COVID about their loved one, getting COVID about spreading COVID to their loved one. And so that affects so many of their decisions. When it comes to caregiving, they may be less inclined to have others come into the home to provide caregiving, which means they have to shoulder more caregiving tasks.

[00:21:19] And caregiving also is harder during COVID. They have to worry about when you’re going out into the public with your loved one, taking them just to the doctor’s office. Now you have all of the protective precautionary measures that have to be taken. And so it was maybe hard enough to just get your loved one into the car and to the doctor’s office.

[00:21:38] And now you have to worry about all of the COVID-19 precautions on top of that. Those are just a couple of examples, but it is. More challenging today to be a caregiver because of what we’re experiencing with the pandemic.

Hanh Brown: [00:21:52] Absolutely. I can’t imagine the weight that they’re carrying when telling a loved one, that they can’t see their mom or dad or spouse, and two, it’s seeing them through a window or perhaps their loved one is being treated.

[00:22:07] And family members rely on that caregiver to give them updates. You know, it’s traumatizing.

Aaron Blight: [00:22:14]In the senior living industry. If that’s been happening everywhere, there’s been lockdowns and family members have not been able to visit their loved ones who are residents in facilities, which has created a whole other host of challenges, mental health, and relationship challenges with.

[00:22:31] The residents and feeling lonely and isolated. And when you’re limited to a window visit with a family or even a video chat is great, but it’s just not the same as being able to hug your loved one. And I think people miss that.

Hanh Brown: [00:22:47] Can you tell me a little bit about the work that you do as a consultant for caregiving connects?

Aaron Blight: [00:22:54] Sure. So as a consultant for caregiving kinetics, I do go out and I speak to groups about caregiving. As I said earlier, I also do training on the care experience for workforce workforces in home care agencies in long-term care facilities, professional caregivers, whether that’s skilled care or, uh, unskilled care.

[00:23:18] And it’s a process of helping people to understand the social context of care care is delivered and physically, and there’s so much focus in caregiving on the physical tasks of caregiving professionally and personally, but there’s not a lot. That’s really done to focus on the social dynamics of care.

[00:23:40] And that’s really what I talk about with, and my training sessions. I also do executive coaching. For long-term care and for home care executives. And I do some team building exercises as well, organizational development type things.

Hanh Brown: [00:23:56] All right. Great. So you’ve done work. We garden caregiving in a wide variety of contexts.

[00:24:02] You’ve been a lecturer, a home care company, owner, author consultant. And of course you’re a caregiver yourself. How has seen caregiving from essentially all angles changed your perspective on caregiving and the best ways to practice it?

Aaron Blight: [00:24:20] I think that for me, the greatest insights that I received from caregiving about caregiving came when I, you started to get into the research, I exposed myself to apply gerontology nursing, social psychology, and some of these things, different lenses to examine the caregiving experience.

[00:24:43] And I came to realize how caregiving shapes, who we are. And how we perceive ourselves. And one of the most important scholars, I think one of those that influenced me the most was Rhonda Montgomery and Carl Kozlowski. They are applied gerontologists. They’re internationally known in the field of caregiving and they developed a theory called family caregiver identity theory, and it looks at caregiving as a series of role based transitions.

[00:25:15] That are precipitated by the changing health conditions of your loved one, so that as the needs of the care receiver evolve and change over time, you as a family member change in your role in relation to that person over time, you start to see yourself less and less as a. A spouse or a son or a daughter, and more and more as a caregiver.

[00:25:43] And the role of caregiver is a very different role than being a wife or being a son or a daughter. And so this conflict can potentially emerge in your mind. And the struggle that comes up to relate to your loved one now in a different way, it’s a way that your loved one requires. But it doesn’t make it easy.

[00:26:06] That is really, I think at the very core, why caregiving is so hard, it’s that you as a family member have to change who you are in this relationship over time to some people you go through it without even consciously thinking about it. And when I reflect upon my own experience for five and a half years taking care of my mother-in-law, I never fully made that transition.

[00:26:33] I didn’t even understand why I was struggling with family caregiving so much, but that’s why it’s because I wanted to be a son-in-law and I didn’t want to really fulfill or embrace this caregiver role. Now, if I was to do it all over again, I would be a much better caregiver to my mother-in-law, but I don’t have that opportunity.

[00:26:54] She’s gone. So I’m hoping that others can learn from when caregiving calls and do a better job than I did.

Hanh Brown: [00:27:02] Thank you so much for your book and your wisdom. And I hope that anyone going through this journey right now will listen and take these lessons learned and become better caregivers. So thank you.

Aaron Blight: [00:27:14] Thank you, Hanh. I really appreciate it.

Hanh Brown: [00:27:17] So I know we touched on COVID a little bit and the effect that it has on those caregivers and the people they’re caring for. So do you have any tips for caregivers to mitigate these negative effect ?

Aaron Blight: [00:27:29] I think that it’s important to realize too, to look at what you can control and what you can’t control.

[00:27:37] And you have to take care giving one day at a time and don’t be overwhelmed by the environment that we’re in right now at the end of the day, it’s you and your loved one. And you’re there helping them with their tasks that they need help with. And as long as you are doing everything that you can to keep your loved ones safe and to listen to the authoritative guidelines that are coming out from our public health officials, you should be okay for loved ones who are in facilities.

[00:28:11] I think that I’ve heard all across the country, people who are wondering should it, should I keep my loved one in the facility or not? That’s not an easy question to answer. I spoke with a gentleman who is 81 years old. And his, his wife is in a dementia care unit in a facility. And he said that to, despite COVID, he’s leaving her there because he knows that is the best place.

[00:28:38] For her to receive the support that she needs. He knows that he has his own limitations and he just cannot meet her needs. If he was to bring her home, the man told me that he was keeping his wife there, despite the fact that he couldn’t see her as much. And despite the risk of COVID in facilities, because he knew that was the best place for her to receive the support that she needs.

[00:29:05] He knew that if. He brought her home from the facility that he would be incapable of meeting her needs at home. And so it was clear to me that this man, he doesn’t love his wife less because he’s leaving her in a facility he’s trying to do what’s best for her. Given the circumstances that we’re in. And when you’re evaluating whether or not your loved one should be receiving formal care in a place other than home, you have to really think about, is there the capability for your loved one to receive the supports that are needed at home or not?

[00:29:41] So it really revolves around the conditions of your loved one and also your capacity to meet them.

Hanh Brown: [00:29:51] There is an absolute answer it’s case by case. And then I think depending on the safety component, we could talk all about the various scenarios that maybe you and I have gone through. But the bottom line is you’re going to have to evaluate what is best safety first and foremost for your loved one, and then roll it out from there for each of the families.

[00:30:15] But I appreciate your advice on that. Personally, have you given thought and how you want to experience your own aging journey?

Aaron Blight: [00:30:25] Thank you for asking me that Hanh, a little bit about that. I’m married and actually married my wife and I are together and we have had the benefit of being very involved in caregiving over time.

[00:30:38] I want to be proactive about the care that I receive and not be a burden to my family. And so we have made some plans in the future for, to have some reserves available for, to cover the care needs that we will have. Eventually I gave a talk a little bit ago and another context and a gentleman approached me later and asked me if I talk very often about long-term care insurance.

[00:31:05] And he presented it like so much of planning for caregiving is who is going to care for you? Where is it going to be done and how are you going to pay for it? And those are really basic questions, right? Who’s going to do it. Where are you going to get it? And how are you going to pay for it? And if you are able to be proactive and think about this in advance and plan, by purchasing something like a long-term care insurance policy that will help you afford the care needs that you have later in life.

Hanh Brown: [00:31:35] Very much needed. I think folks who are in this industry, it’s hard not to have that notion like in front of you because you face it every day and you also thinking, wow, how am I going to pay for this? What do I want in my own aging journey? Who do I want to care for me? And that kind of thing. So I actually think about it a lot.

[00:31:59] I’m a young baby boomer, but I’m also just become more conscious. Having gone through it with my mom, my dad, and now my sister it’s definitely changed my perspective. And the remaining third of my life.

Aaron Blight: [00:32:14] The thing about caregiving is we’re all going to get there unless we’re taken in a, in a car wreck or something like that unexpectedly, we will all reach that point that we will be relying on other people for help.

[00:32:27] And it’s good to be cognizant of that and to consider how is that going to play out in your life and what can you do to be prepared for that now?

Hanh Brown: [00:32:37] Thank you so much. Do you have any other thoughts that you would like to share with the listeners?

Aaron Blight: [00:32:42] Well, Hanh, I just like to thank you for having me on the show today and being able to talk about when caregiving calls, I’m super excited to share the book with caregivers who are out there and professionals who are working with caregivers and supporting them.

[00:32:57] And I appreciate all that you do also with your podcast to bring knowledge and insights to others. Thank you.

Hanh Brown: [00:33:04] It’s an honor. I think having guests like yourself has been a blessing, right? Because there’s so many empathetic, compassionate folks. Serving older adults. And we just need to amplify that. Thank you so much.

Aaron’s Links:

LinkedIn: https://www.linkedin.com/in/aaronblight/
Twitter: https://twitter.com/aaronblight
Caregiving Kinetics: https://caregivingkinetics.com/
Speaker Match: https://www.speakermatch.com/profile/speaker/aaronblight/biography
Facebook: https://www.facebook.com/AaronBlightAuthor
Email: mailto:aaron@caregivingkinetics.com