[00:00:25] By the last six months of his life, I spent 24/7 managing health crises and keeping him safe. Although I could acknowledge that some of the care I was providing was similar to that of a caregiver, I never personally identified as one. After my father-in-law’s passing in 2017, in the following months of taking care of all that needs to be handled when someone dies, I felt almost shell shocked. 

[00:01:02] It was like I’d been on this roller coaster going around and around and just trying to hold on, and then one day it suddenly stopped. I didn’t even have the language to communicate what it was I was walking through. I didn’t know what to do. I didn’t know what this feeling was. What I did know is that there was no way I was the only person who had gone through an experience like this. 

[00:01:35] So, I began to do some research. I reached out to caregiving organizations and support groups, and I started to find and connect with others. I listened to stories of people who had gone through a similar experience as mine, and I began to realize that I had been a family caregiver this whole time. Once I had the language to identify as a family caregiver, it was a way of saying to myself and others that I deserved support. 

[00:02:14] The experience changed me and opened the door to what life is in a way I would have never seen otherwise. It fueled me to support others going through a caregiving experience of their own. I became a Certified Senior Advisor and started my organization Caregiver Transitions to connect caregivers with purposeful resources and community to feel less alone in their own journeys. 

[00:02:52] On today’s episode, our guest social gerontologist, Dr. Macie shares her insights on all of the various reasons why it can be so difficult to identify as a family caregiver, and how we as a society can better recognize this role. 

[00:03:16] Welcome to The Caregiving Soul. I’m Danelle LeBlanc. 

[00:03:23] [Music Ends] 

[00:03:23] Dr. Smith: Well, I think first we have to define what we mean by caregivers, and so in the work that I do, I have family caregivers and I also have professional caregivers, better understanding the definition of the two. And so, of course, family caregivers – typically they don’t get paid, they’re the family members or the friends who volunteer to come over or to bring their loved one in with them and to provide care. 

[00:03:49] Professional caregivers is when you actually contact a home care company and they’re paying a trained caregiver to come in and to provide care. And so, one of the things I think makes it difficult for family caregivers who identify as a family caregiver number one is fear, because 9 times out of 10 you don’t plan your life to one day become, be a family caregiver. You don’t say, I wanna go to school, I wanna get my education or my degree to be a family caregiver, and sometimes you wake up one day and you are that. 

[00:04:22] And so, there’s fear, because now if I’m a family caregiver, someone who I love and adore, and someone who’s taken care of me all my life now needs my help. So, that means they’re suffering or hurting in some form or fashion. So, there’s a grieving process there. Family caregiving is a very isolating role because now I have an adult that’s depending on me or their life sustainability and for their happiness, for their hope, for their day-to-day. It’s totally different from caring for a child or a toddler.  

[00:04:57] Dannelle: So, in your opinion, what are some of the ways we view different cultures and how does that impact the way we approach caregiving? 

[00:05:07] Dr. Smith: When we think about, you know, cultural aspects it is her-, I, I won’t say hereditary, but it’s like an unspoken rule, or in my house it’s a spoken rule, but we take care of our own. So, that’s culturally, that’s how we were raised in the African-American community.  

[00:05:25] And then I’ll even talk a little bit about the Hispanic community, just in working with families, there’s a fear there of identifying, because, you know, now you have to ask for resources for me to take care of my loved one in my home. Well, you know, individuals in the Hispanic community, they typically are resistant to reach out for help because of the gaps and the holes in the immigration laws. 

[00:05:48] So, you think about them being fearful of being deported and so cultural factors [Music] play a big role in someone self-identifying as a family caregiver. And, you know, a lot of times you can’t, you, you can’t fix what you don’t face. And so, I think that we have to do a better job of making family caregiving a real thing, a natural thing, and really showing that it’s okay to ask for help and to receive help. 

[00:06:17] [Music Ends] 

[00:06:17] Dannelle: So true. We can’t fix what we can’t face. We can’t fix what we can’t name.  

[00:06:25] Dr. Smith: Yeah. You know, I would also say, to add to that, geographic locations, you know, where you were raised. In the south is gonna be different from up north or out west. And so, in the south, culturally what people say really does matter to us and how our family structure and our families handle the caregiving journey or the caregiving process. 

[00:06:54] Because you would hear family members who – you can probably attest to this Dannelle – who don’t do not one thing but got a whole lot to say about what you should be doing or what you shouldn’t be doing. And then they’ll start talking about, “Well, great, great, great Granddaddy did not do that to great, great, great-Grandmama”. That’s a totally different time. There were probably less resources out there than what we have now. 

[00:07:20] And so, when we don’t consider the nuances of the industry or just being innovative and really standing up for yourself as a family caregiver saying, “Hey, I can’t do it all”. Because before you can be a blessing or a helper, supporter, anybody else, you gotta be strong, you gotta be healthy.  

[00:07:41] Going back to your question with cultural factors, culture is not just skin color or race or ethnicity. It is about family structure. It is about location, geographic areas. It is about spirituality. Right? So, all of those are cultural factors and could be cultural barriers to self-identifying as a family caregiver. And when you don’t self-identify, you don’t receive the help that you need because… 

[00:08:09] It’s almost like just say if you were a supervisor and you got one person on your team who constantly comes in late, but you don’t wanna call ’em out because you don’t like confrontation. So, you speak to all 20 of your employees about coming in late, and the one person who, who comes in late, [makes a whoosh sound]. It goes over their head. It’s like, oh, she’s not talking about me. Yeah, she is. And so, those are the things that you definitely have to consider.  

[00:08:34] Culture is much more than skin color and ethnicity, and we really have to consider the whole person and their experiences and really say to them, it’s okay to identify as a family caregiver because you wouldn’t want it any other way. You don’t want anybody else taking care of your mom. You wanna know that you have done everything that you could do in your power to be as healthy for her or for him, so that way at the end of the day when it’s all said and done, you have no regrets. 

[00:09:08] Dannelle: Yeah, [Music] absolutely. And when we recognize ourselves as family caregivers, when we accept that role, then it also helps to connect us to resources and support that help us manage things like the judgements that we may receive from others who are critical of hard decisions that we’ve had to make.  

[00:09:36] So, I think that culturally, whether it’s based on location, or ethnicity, or family tradition, religion, what have you, that in order to navigate those expectations mindfully, to address them in a practical way, then we have to be educated about what this role means, what this work means, and to be able to communicate that to other family members in a way that shifts the conversation beyond that. You know, those grooves that get worn in our family conversations, where it’s the same things are said on either side back and forth, to interrupt that cycle – 

[00:10:24] Dr. Smith: Mhmm. 

[00:10:26] Dannelle: – interrupt those types of conversations, with fresh perspective.  

[00:10:32] [Music Ends] 

[00:10:32] Dannelle: So, you talked about the impact of different cultures and you talked a little bit about some of the ways that that impacts caregiving relationship. In your opinion, what are some of the ways we here, in general, in the US, view older adults, and how does that impact the way we approach caregiving, especially when it remains unnamed or unrecognized? 

[00:11:01] Dr. Smith: Aging in America is different from aging in other countries such as Japan. There’s longer longevity in Japan because when their seniors reach a particular age, they are revered, they’re celebrated. This is what you wanna be, this is what you want to achieve. And you know, Americans, we say we wanna live a long time, but we don’t want to get old. Well, if you not getting older, you ain’t living. Every time you turn on the TV, you talk about the power of media, anti-aging or reverse the aging process. How you gonna do that? 

[00:11:32] And when we think about the, the majority of our family caregivers are women, now there’s a growing number of men, I mean, that gap is shortening, but there are more women. And, the average age of a woman caregiver, family caregiver is 49 and a half. So, when we think about us caring for someone else, cuz women – we’re natural nurturers. And so, we’re at the top of the heart disease rate. We’re at the top or the epicenter of Alzheimer’s disease. We’re at the epicenter of a lot of these chronic illnesses.  

[00:12:06] One of the reasons is our stress level. We stress a lot because we care for mine, yours, theirs, everybody else’s. And so, we’re not caring for ourselves. And when you don’t care for yourself, you do age a lot quicker than someone who doesn’t have the stressors that you have. And when I say age quicker, I’m talking physically, I’m talking medically, I’m talking emotionally because age goes way beyond the way you look, how you feel. And so, lack of self-care is a component as well that we have to consider. 

[00:12:44] And so, I just really think the conversations that we have with our families, you know, our parents and those responsible for us at a younger age. I really feel like you have be careful with the responsibilities we put on our children prematurely. I want you to take care of me. Don’t put me in a home, don’t do this and don’t do that. But you never know what you’re gonna be faced with. 

[00:13:05] I tell my families all the time when daughters or sons, are hesitant about even looking at out-of-home placement for their loved ones, they would say, “You know, I promised mom that she could live with me”. Well, mom didn’t know she was gonna have Alzheimer’s disease, or Dad didn’t know he was gonna be a paraplegic or quadriplegic. And so, you know, I really have to have those tough conversations. And it starts with realizing what you’re able to do as a person in your immediate space. 

[00:13:33] Dannelle: Absolutely. Having tough, realistic conversations that involve not just quality of life and care for the person who needs it, but also for those family members, caregivers who are providing support so that it opens the door to say that, okay, if mom says,  “Don’t put me in that nursing home”, and we hear that, that we have a follow up discussion around, “Okay, what needs to take place? What kind of support do I need as a caregiver, as a daughter, with other obligations and responsibilities, to be able to do my best to facilitate that”. So, I mean, there are so many different variables to, to navigate here. 

[00:14:32] So, how can we, and society, better recognize our role? 

[00:14:40] [Music] 

[00:14:40] Dr. Smith: In your conversation or in your engagement with people, loved ones, friends, colleagues, coworkers, if at any given point in time you say, out of your mouth, “I care for” and that is connected to a human being, you are a family caregiver. And that is okay because I promise you when you say that, you’re gonna get a lot of support and a lot of other self-identifying individuals that you never would’ve even considered or had access to had you not revealed even, not even saying you’re a caregiver, but revealing, “I help” or “I support”, or “I take care of”. Then you can receive it, right?  

[00:15:31] And so, what you do is, out of your mouth you have professed and confessed that you yourself take care of someone else. And now, “I do too! I take care of my dad”, or “I took care of my mom”, and now you’re getting resources coming to you in droves because you have confided or expressed to someone what you’re feeling here and describing, you know, what it is that you do, and sometimes it becomes a definition of who you are that time. 

[00:16:05] [Music Ends] 

[00:16:05] Sometimes we think as family caregivers that roles are supposed to be reversed, and now mama is the daughter and the daughter is now the mama. That’s wrong. That’s one of the worst things you can do for yourself and for your loved ones. 

[00:16:22] And what I find is that, once you figure out how to effectively communicate with your loved one who is a senior, or older adult loved one, it actually does make the caregiving process a lot better, a lot more efficient, a lot more respectful, and a lot more hopeful because again, the family caregiver now knows that things are changing, things are gonna be different. 

[00:16:49] And so, when you foster a positive engagement profile with your loved one, then it makes the caregiving process a lot more palatable, and you’ll find yourself having more time to do things for yourself because now your loved one, you created a space or an environment of calmness, a supportive environment where the mood is happy, that person does not feel like they’re a burden. That person does not feel like they’ve lost their independence. Because of the way you speak into their soul.  

[00:17:25] Dannelle: So, Dr. Smith, what are some of the resources that you recommend when a person has accepted this identity as “caregiver”? 

[00:17:38] Dr. Smith: I recommend anyone who has a a frontline relative who is a senior and you know that you are the responsible party, and you know that you’re gonna be the one to take care of that person in the event they need help because they already call you for stuff anyway, I would always recommend getting in contact with their local area agency on aging. Every county, and it could be several counties grouped together, but every county has an area agency on aging and the name could vary in different capacities, and every state has a department on aging. Go ahead and get up to speed on what those resources look like and also how to qualify for those services and so being able to plan early will better position you to take care of your loved one. 

[00:18:30] Dannelle: Thank you so much for mentioning that as being a primary resource for anyone who is caring for, or helping to look out for, an older adult in their family. I am a huge, huge supporter of [Music] the local area agencies on aging. Thank you so much for joining me today. 

[00:18:58] Dr. Smith: Thank you! I enjoyed it. 

[00:19:03] Dannelle: Thank you for joining our conversation with Dr. Macie Smith.  

[00:19:09] Once we’re able to name our caregiving experience, we’re better able to connect to resources that support wellness. Fear and denial are natural, especially when we’re stepping into this role unexpectedly. So, we need that kind of naming connection to see what’s possible to make informed decisions. We also need to do the internal work of defining what it means to provide care and how it can work in our lives. We can’t effectively care for someone else until we have a plan for ourselves. 

[00:19:53] Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including transcripts and relevant resource links. 

[00:20:06] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod.  

[00:20:23] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts.  

[00:20:39] And remember, the right care includes care for you. 

[00:20:46] [Music Ends] 

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