Hope for living, loving and caring with no regrets!
Episode 16
- Caregiving has to be done communally, with communication and agreement
- Learn to create the container of caregiving where it is good for all involved. No one getting lost in the role.
- There are cycles in life- learn from each of them. There will always be a next season of caring.
- Caregiving is a reciprocal relationship.
- Seeing relationships as sacred you will be much more intentional.
- Because the relationship is sacred you will lead with love and respect.
- Don’t do caregiving alone.
- Speak your truth. Listen with love. Acknowledge other’s journeys.
Transcript
*Transcript is an actual recount of the live conversation
At the fragile age of 12 Debra’s father had a massive stroke and her world shifted to becoming his primary caregiver for 12 years. This journey of observing humanity, trusting her quintessential old soul self, and caring for her father at a young age, all played crucial parts in forging who she has always been meant to be. An intuitive guide who cares about creating meaningful connections for individuals to be seen and valued at the highest level as a highly sought after coach, public speaker, facilitator, and mentor, Deborah has learned to trust her truth, find joy in the journey, and take massive leaps of faith to share her experiences with others in order to guide them to healing and living a life that is divinely aligned.
Hi, Deb. So excited to have you here today.
Deborah Harlow: Thank you.
Rayna Neises: Well, let’s just start off having you share with our listeners a little bit about your caregiving story, obviously started when you were really young, but share with us a little bit about what that was like.
Deborah Harlow: yeah, so, unplanned, obviously at that young age, but my father had a massive stroke when I was 12. And he was our primary breadwinner and my mom was a stay at home mom and we had just relocated to the San Francisco Bay area. So, every possible, unexpected, unwanted plan came forward. We had no community, no family, no plugged-in network to be like, Oh, this thing has happened, and we need support.
So my mom went out to become the breadwinner. Primary breadwinner for the family now in San Francisco where it’s quite expensive. I had just turned 12 and my brother was soon to be turning 10 so what we did was I dropped out of public school. I taught myself home studies, hospice, and support, health care nurses came out to teach me how to be my dad’s primary caregiver, and so I was doing everything from medication to insulin shots to planning meals, laundry, helping my brother with homework. And I went from child, very young child, tween, age to adult overnight.
Rayna Neises: Oh.
Deborah Harlow: There was no pivoting, there was no planning, there was no, let’s talk about how these roles will impact you. There was nothing. We were in a survival mode and we stayed in survival mode for 12 years until my father passed and I became very, very good at problem-solving.I was the person that you could rely on to figure things out, no matter how big they were. I remember being on phone calls with insurance agents and I’d be asking questions and then there’d be a moment where they would pause and say, can I ask how old you are? Just because your voice sounds young?
And I would say, Oh, I’m 12 I’m 13 and they’re like, well, that’s impossible. You were speaking as if you were an adult. And I was very aware that I could shift and take on responsibility and often our greatest gifts become our shadow side. So what I learned as I went into adulthood is I was so self-reliant and I was so capable that I didn’t know how to trust others to help me.
And I didn’t know how to trust myself to ask for help cause I was scared to death that when I would ask, I would be let down because as a child, I often felt let down because I would ask for help and nobody was there. And that journey became one where it really had a toxic toll on me in my adult years after my dad passed incorporate, because corporate is this crazy grind where it is kind of cutthroat and it was just like success at all costs, success at all costs, and I was kind of burning myself out.
And then along the way, my maternal grandparents as they were getting older, needed care. And so, I was navigating working full time, going to school full time at night for pediatric nursing, and then on the weekends traveling about two hours away to care for my grandparents. And at that point, I started to realize that there has to be a better way to navigate this because I knew I wasn’t going to do it without getting help.
And that was the first area of growth for me to really look at, okay. Caregiving has to be done differently, and it has to be done communally. It has to be done with having conversations and cocreation what the plan looks like. and that was the first kind of pivot for me. I’m looking into, okay, how could caregiving be different at that stage?
And then the stage that I’m in now. I’m in the sandwich phase of life. So, I’m raising my eight, soon to be nine-year-old daughter with my hubby. We live in Southern California and I’m caregiving long distance to my mom and my brother who both have health concerns, up in Sacramento. And that’s like a nine-hour drive away, 500 miles away.
So there’s this long-distance caregiving. There’s the sandwich phase of both sides of my life or asking something from me. And I really do feel that all of my journeys of caregiving has prepared me for where I’m at today because I’m very clear about how this role needs to work. And then all of the things along the way that didn’t work were messages for me to be able to refine because this is where I’m at today and this is the biggest in my mind, this is the biggest ask of caregiving.
Even though the 12-year-old Deb had a lot asked of her because right now I’m raising my daughter. And she’s my primary responsibility. So, I owe it to her to create this container where it’s good for all of us and that we don’t get lost in the roles of caregiving. And, those are the lessons that I’ve learned along the way throughout a lifetime. It feels like of caregiving.
Rayna Neises: That’s what I noticed as you were sharing. That it really has been a lifetime of caregiving. And there are seasons where they looked different, but through each season you’ve been able to look at what worked well for you and what was not working and say okay, I need to do this differently next time. And the next season comes and you’re available and you’re supporting and you’re caring, but it doesn’t look the same as the first season because you’ve learned how to have more support, how to do it better for you and for the people you’re caring for as well as your daughter.
Deborah Harlow: Most definitely. I think the biggest invitation in life and in the experience of humanity is to realize that everything is a continual growth piece to it. And that things do come in cycles. I mean, nature shows us. There are cycles. Life shows us there are cycles, there are seasons, as you said, which is beautiful.
And so understanding that. Your spring will lead to your summer, to your fall, to your winter in actual seasons. But it will also show that things go through rotations. Same as with all relationships. So if we allow ourselves to be open to what the first experience was and actually be intentional. We were talking about this earlier, being intentional about.
Okay. What did I need to learn about that experience? What didn’t work so I can release it without any guilt, without any shame? Thank you for the lesson I released you and here’s how I’m going to do it next time. Because caregiving will always have the next time. You will always find some element of caregiving.
Our healthcare industry cannot carry the burden of all of those who are needing care. So as family members, as community members, it behooves us. Let’s start looking at, okay, what’s important to me? Having the conversation of what’s important with my loved ones. So we’re not caught off guard like I was when I was 12 and we really didn’t have any notice by the time my grandparents needed it. My mom and I were having conversations with them because my mom and I being lifelong caregivers, that point where like, ah, we’re not going to get broadsided with this one. So, we have those conversations and now that my grandparents have passed and it’s me focusing on my mom, I’m really doubling down on the conversations and the planning because she doesn’t have the energy to initiate those.
She’s been a caregiver for 30 years of her life. She’s exhausted. You want to talk about fatigue from caregiving? She’s the queen. The got the poster and the Tiara for it. I mean, she’s, she’s got it. So when I look at her journey, I can look at it with compassion and say, okay, I’m going to lead the way in some of these conversations because I don’t want to be broadsided because her health bubbles up with the need that we weren’t planning for or that we didn’t have a structure around so that I can honor her needs and she can honor my needs. Because it is a reciprocal relationship. It takes two buying in to decide how you want that relationship to go and caregiving. Okay.
Rayna Neises: It really does. I see so many times people are not embracing that hat and saying, I am a caregiver. Rather, they’re just stepping in and saying, Oh, I’m just helping out. I’m just helping out. Just like, well, you’re helping out at home and you’re helping out with your parents. There’s really understanding that caregiving role makes a big difference because it does give you permission to understand that it’s a job. It’s responsibilities. There’s a whole skill set that needs to be involved in that there’s a team that needs to be built around you. There’s just so many pieces involved when you really realize that your caregiving and medical need is a part of that, but there’s so much more of the emotional and spiritual needs of our loved ones that are not being addressed. If we’re only worrying about the medical side.
Deborah Harlow: Right? I often feel like what happens with, the role of the loved one needs care is that as a culture, we’ve lost the sacredness and that Rite of passage. And when you look at your relationships as being sacred, you will be much more intentional. You will hit pause to be able to make sure that you’ve created something that is sacred. And so, the whole reference that you said about wearing that hat, it really is saying, okay, well when I’m wearing the hat of a caregiver, even I did this as a young age. When I was in caregiver mode with my dad, I was caregiver and my dialogue was different and he would say, well, you know, you can’t talk to me that way that’s disrespectful. I said I’m not your daughter right now. I’m your caregiver. I’m the person who was helping you with your medicine. And no, you can’t have a donut. You have to get a salad or whatever it was. And then when we would have that conversation, I would then take the caregiving hat off. I would say, dad, I love you. And every time he got crunchy, as I call it, or every time that he got a little rough around the edges, I would always take the caregiving hat off and say, dad, on your daughter, and I love you. Stating those words actually shifted his awareness from this person in front of me as my caregiver to this person in front of me as my daughter.
And it’s because our relationship was sacred. We took the time to pay attention to those. Was it always perfect by no means? No. Was there yelling and crying and apologies later? Yes, yes and yes, but because relationships are super sacred to me and to those around me, that’s how that was different. That’s how we were able to say, okay. Caregiving encompasses all the things you just said. There is the spiritual, there is the mental health, there is the physical health. There is the relationship. What was our relationship prior to caregiving and what is it now? What needed healing that is doubly needing healing cause right now we’re in this. Power struggle of who’s in charge and who gets to say about freedom and all of those things. So against sacredness in conversation and sacredness in choice is so important for the journey of caregiving to actually work beneficially for all involved. And I really feel like that’s what our culture is going to be asked to do more of, to look at relationships in a sacred manner, to have the tough conversations because you care and because you know that when you do that, you’re always set up for better success on the other end because you will lead with love and you will lead with respect and you’ll be able to navigate the times when it gets crunchy without it being blowing up in your face and you can’t move forward.
So that sacred piece has been really the saving grace, if you will, for a lot of those journeys of seasons for me of caregiving. And I always started with that even at a very young age.
Rayna Neises: That’s amazing. And so wise, I agree that through even the journey of Alzheimer’s with my dad, that was something that I found was stopping and making that eye to eye contact and saying, daddy, I love you. We’re okay. I’m just here to help. And that did just shift and change everything in the moment. So, and that’s true in all relationships. You know, being a grandma, I love, love having them look you in the eye and I love you. And you’re just like, Oh, I mean, just everything melts. And so, having that, realizing that that’s in place in all of those relationships and engaging that and keeping it in the forefront, always leaning into that love
Deborah Harlow: yes, yes.
[00:12:43] Rayna Neises: Great wisdom. So, tell me a little bit about what advice would you give people who find themselves where you are now in that sandwich generation.
Deborah Harlow: The research that’s been done right now states that Gen X women, in particular, are going to be the hardest hit caregiving a populace. So far in our studies, obviously, you know, things will continue on. and it’s because they’re raising children and caregiving and having a career.
It’s not as in husband and wife, retired and wife is caring for husband. You know, generations are living longer. some women are having children later in life. Millennial children are moving back in with parents. So that sandwich phase is really intense for a lot of Gen X women. And the biggest thing is to follow the principles of don’t do it alone and don’t feel like you have to do everything perfectly because you’re sacrificing your needs and some Holy grail of to be a good daughter, to be a good mother, I have to sacrifice everything about me. and again, it comes back to sacred relationships and the way that we treat ourselves as the way that others treat us. So if we don’t have healthy boundaries, if we don’t speak her truth, if we don’t state, I’m here to be an awesome mom and an awesome daughter. Slash, caregiver, and I have this business I’m running. So because all three are incredibly important to me. Let’s talk about how we can co-create a plan that works. How does my daughter, even at eight years of age, buy into the process because she understands her role? How does my mom buy-in? Because she understands her role. And it’s like anything else when you decide to be in a relationship, it has to be reciprocal.
We have to communicate about what our roles look like and that doesn’t happen with one conversation. I didn’t have one conversation with my eight-year-old and one conversation with my mom and was like, cool, we’re done. Yay. Moving on. No, it was like, okay. And then a lot of listening and our society doesn’t create a lot of space for hitting pause and for listening and having patients, and so it was really an active invitation to have those conversations to say, I’m going to pose a question and I’m going to listen. I’m literally just going to listen for however long. I need to listen, and then it will be my turn. And so the biggest piece of advice is if you catch yourself being in this chapter of sandwich phase where you’re raising children and caregiving, it’s to follow the analogy that we’ve always heard.
You have to put your oxygen mask on first for caring for yourself, and even more so you need to speak your truth. You need to take the role of stating, I’m in this gap. I’m the one that both sides are asking from. So I need to clearly state what works for me and what doesn’t. And it’s amazing what will happen when we step to the other side of what we’re afraid of having as a conversation. It’s often not as bad as we think if we lead with love and we lead with purpose. So I’ve had conversations with my mom that were really challenging, but I would say, okay, look, the only way that this works of me being of support to you and of care to you is if we all agree upon what it looks like. I love you. I love me. I love my daughter. It’s not a competition. So how are we all going to make this work? And again, leading with that love, then my mom would say, okay, well I’m willing to make this adjustment. And I love that you’re doing this in your business. So what if we didn’t talk on the day that you do most of your coaching calls and we talk on this day?
Or could you come upon this week cause you’re not traveling for work and take me to the doctor? Great. It’s a dialogue, right? Like any other relationship. But I needed to start with stating my boundaries. So that I could be of service if I’m of service from an empty cup, nobody benefits. So I need to start with a cup. So full it, overrun it, and then I can give from that excess. And then my daughter doesn’t feel like she doesn’t have attention and my mom doesn’t feel like she doesn’t have attention. And I don’t feel like I’m lacking. I’m not trying to hold on to the goodness I’m giving. So it’s really important for anybody in caregiving, but especially in the sandwich space, because you’ve got somebody on each side.
Looking to you for care and advice and guidance. and that’s been the biggest thing that I’ve been able to really have as my guiding force with my mom and my daughter. And any other time I find myself in, that sandwich face of caregiving.
Rayna Neises: So important the dialogues we make them bigger than they are in our head. I think before we approach them, but like you said, leading with love and that, I want to help you. I want to serve you. I want to be here for you. I have these needs to makes that were the conversation isn’t as scary and is something that can be an ongoing conversation, so that. They can come to you with their needs, you can come to them with your needs. And it’s just that reciprocal relationship. So important. And I love that even your daughter so young, you’re still, you’re having those conversations in that framework with her to teach her to do that as well.
Deborah Harlow: Yeah. I think because my journey as a youth caregiver was so profound as an impact on me. I’m highly attuned to what I want her experience to be looking like not that I’m choreographing her journey, but just to say, I don’t want you to step into caregiving as a child where you had no choice. I don’t want your emotions to be sideswiped or your youth experiences to be put on pause because mommy is caregiving, you know? So naturally, she’s a second-tier caregiver because she’s looking at me caregiving and she has a big empathic heart. So, she wants to jump in and I’m always talking with her about your role as a caregiver right now is fully out of love connection with grandmum. It’s not because you have to get via caregiver. Right. And that’s so important because I didn’t feel like I had a choice as a child, and I want her to have a choice. Even if my mom was living with us, I would still want that to be like, I want you to be a child who chooses to do something caring for your grandmum or for your loved one. Cause it will shift the way that that role works for her because she’s not in a role where she has to right now like I needed to when I was in it. There was no other alternative. So I think my journey also has prepared me to be able to be more compassionate and aware and how her experience as a youth caregiver will go while we’re in this sandwich phase.
[00:19:06]Rayna Neises: Why have you chosen to be active with caregiving communities, especially when you’re doing so many other things?
Deborah Harlow: You know, because I would’ve given anything for somebody who had walked the path before me to have shared their wisdom, I would’ve given anything at every single chapter for somebody to say, I’m not here to give you wisdom. I’m just here to listen cause I understand. I’ve been in your shoes that the need of humanity often isn’t love. It’s acknowledgment. And so the acknowledgment of saying, whew, I don’t know how you’re doing what you’re doing is nice, but it’s even deeper when somebody says, I actually know what that feels like and I’m just going to listen to you now and when you’re ready, I’m going to share how my journey was and maybe you’ll get a little Pearl of wisdom out of that.
Or something will spark in a hall where you’re like, oh, I was afraid to speak that truth, but you’ve already spoken it, so I’ll be okay ’cause you’re still alive. I won’t die to speak that truth. So my role is often, I think when we’re given the divine gift of an experience that we have not only survived but thrived through and come out on the other side, joyous and grateful, and maybe a few battle wounds, but we’re still bright and shiny that we can lead with love and we can share our experiences because you will never know how powerful it is to speak your truth and make a difference in somebody’s life if you choose not to. And sometimes it’s just speaking your truth. You don’t have to go save the world. You don’t have to go change legislation for caregivers if that’s your path, God speed. I support you 100% but the biggest thing is being able to just transparently and vulnerably speak your truth, your experience because you’re an expert at it. It’s your journey. And I promise you, there will be one if not many people listening who you will be the savior in their day. They will hear that and say, I’m not alone. She’s doing quite well. So there’s hope for me. and I have a kindred soul in the world who actually really understands what I’m going through.
So my decision to be active in public, in the caregiving community, especially with youth caregivers, is because I would have given anything to have that. And so I know how valuable it is to just know that you’re not alone and to be acknowledged. I’m a big proponent of, once you know something, what did you do? You know, there’s this obligation in humanity where we can’t just ignore that our journey has power and stick her head in the sand like an ostrich. The invitation is once you knew what did you, do? You speak your truth because other people are wanting to be able to know that because they deserve that and that’s the best of humanity.
Rayna Neises: So beautiful, and I love that about you, that you have such joy in sharing your journey and your wisdom with others and listeners I know that, yeah. You have really enjoyed our time together and gain so much. if you want to stay in touch with Deborah, feel free to visit her at her website, www.TheJoyfulLeader.com and thank you so much for being here today, Deborah.
I just really enjoyed being able to talk with you. And that kindred spirit is here with me and I just treasure what you’re doing and I’m so thankful for the opportunity to visit with you today.
Deborah Harlow: Well, thank you so much. I’m grateful that you’re doing what you’re doing because it is so necessary in the world and it makes such a big difference in the lives of so many. So I’m grateful for you.
Rayna Neises: Thank you.
Just to reminder A Season of Caring Podcast is created for the encouragement of family caregivers. If you have a medical, financial, or legal question, be sure to contact your local professionals and remember to take heart in your season of caring.
*Transcript is an actual recount of the live conversation
Resources
Deborah Harlow
Coach, Public Speaker, Facilitator, and Mentor
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Meet Your Host
Rayna Neises, ACC
Your Host
An ICF Certified Coach, Pod-caster, Author & Speaker, offers encouragement, support and resources to those who are in a Season of Caring for Aging Parents.
Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected
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