Impacts of Caregiving for Both Caregivers and Care Recipients

[00:00:02] what you want, when you want it, where you want it. This is The MESH. This episode of The Caregiver Community is brought to you by Pace at Home in Newton, North Carolina. I used to think healthcare was all the same until I discovered Pace at Home. Now I can come to a place to stay active, see the doctor, or just enjoy a meal with my friends. Plus, having a team of people that help me make sense of my options

[00:00:30] gives me the support I need to stay in charge of my own health. It's been life-changing. With Pace at Home, we offer a unique lineup of personalized care and a caring staff that feels like family, all under one roof. Call today and discover a community of caring delivered at your own pace. Hello. We're so happy you've joined us. Today we're talking about a topic that's at the very heart of ACAP community

[00:00:58] and our community-based ACAP chapters currently in four states. Our conversation today will be all about what it means to be a caregiver and how that role impacts both caregivers and care recipients. Welcome. I'm your host, Karen Summey. I work for ACAP community and I'm an active family caregiver. If you're listening to our live broadcast,

[00:01:23] today is Friday, March 7, 2025 at 12 noon Eastern Standard Time. Both my guests and I are live in the chat panel as you watch the show we recorded last week. We're standing by ready to take your questions and comments during the broadcast. To join in the discussion, you simply need to be signed in to your own YouTube or Google account to access the chat panel. If you're listening to our replay, you can also sign in and leave comments below your video screen

[00:01:53] and we'll get back to you very soon. With that, let's dive in. My guest today needs little introduction to our regular viewers and listeners as she is none other than the ACAP community founder and executive director, Frances Hall. Frances founded ACAP community as a non-profit back in 2012 and has dedicated herself to making it a true force for caregivers ever since.

[00:02:20] She established the organization on a local college campus for her colleagues who, like her, were caring for an aging parent. Today, ACAP is a highly valued resource for caregivers. Frances, welcome to First Fridays with ACAP. Thank you. It's nice to be here and thank you for the kind introduction. You're very welcome. Well, I am very excited for today's conversation.

[00:02:45] I can honestly say that three and a half years with ACAP have taught me so much about caregiving and it's really given me a lot of perspective as I've navigated my own caregiving journey and I've also started my senior years. That creeps up on all of us. It does. Okay, so let's talk a little bit about how we define the word caregiving and how many people are adult caregivers in the United States today. Okay. Okay.

[00:03:14] Let's start with just a really basic, just a basic understanding of caregiving. Caregiving is basically the act of regularly providing care for someone who needs help taking care of himself or herself. Real simple. Typically, though, we think about a caregiver as someone who is taking care of someone who has a physical or mental or cognitive issue. But I want to talk about how it's a yes, yes, and.

[00:03:45] Taking care of someone who's confined to a bed or a wheelchair definitely is a caregiver. Helping take care of someone after surgery or a heart attack or a chronic kind of condition definitely is a caregiver. Someone who's caring for a loved one who has dementia, definitely a caregiver. But caregivers also attend to emotional care for their loved one, listening to them, talking

[00:04:12] with them, reassuring them, and regularly being present emotionally and physically. Um, financial care, balancing checkbooks, paying bills, doing the purchasing of things that are needed, providing services, regularly cooking, cleaning. I need people to come do that for me, but. Absolutely. Regularly cooking, cleaning, cutting grass, shopping for food, filling pill boxes, making doctor's

[00:04:40] appointments, transporting people to those appointments, joining them for the appointments, you know, all of those kinds of things. So bottom line, caregiving can range from something very, very simple to extremely complex. Um, caregiving can be very rewarding and give people, give caregivers a sense of purpose.

[00:05:03] But it also can be very hard, absolutely overwhelming and exhausting and frustrating, and at times exasperating, very honestly. Caregivers are the backbone of our long-term care for older adults in the United States and really worldwide. And it, in the United States, is considered a national health crisis. Regardless, most caregivers say it is worth it.

[00:05:30] It is, it is an opportunity for parents, with our parents, it's an opportunity to give back to them for a spouse or another loved one. It's an opportunity to continue that care. And there have been a lot of changes in caregiving in the, in recent past, such as just simply the number of older adults and that we're living longer. We baby boomers are coming through and here we are folks.

[00:05:57] Women in the workforce, we're not any longer just, um, just the homemakers and the caregivers. We're in the workforce. And so we're juggling all of that. Uh, composition of families. We have blended families and we have families that look very different than in the past. Distance geographically and emotionally. Um, I, I think about, uh, the Waltons and John Boyan, you know, three generations live together.

[00:06:26] We don't often, typically we don't do that anymore. Certainly healthcare has changed and technology has changed dramatically. Um, I think you know that every five years, AARP and NAC, National Alliance for Caregiving, conduct a major survey with thousands of caregivers, um, caregivers for older adults.

[00:06:50] And they, they really get to the bottom of what it is to be a caregiver and what the needs are and that sort of thing. What they have found in the 2020 report, we haven't gotten the 2025 yet. Right. Um, but in 2020, they were saying that more than 53 million people in the United States were caring for someone who was an older adult. Um, that number is going to be more now.

[00:07:17] Um, an estimate, just, just doing some quick math. There's an estimate of 20 million of us who are adult children who are caring for a parent. Almost, uh, almost a quarter of caregivers are caring not just for one person, but for two people or more. So that's huge. That's significant. Um, caregiving is, is all ages. All walks of life.

[00:07:45] Uh, we are seeing more and more in ACAP of younger adults who are caring for either parents who are not that old, but have chronic conditions, um, as well as older adults who are seniors ourselves, who are caring for aging parents who are in their eighties or nineties. And so it really is a whole gamut. Um, but a lot of people, and part of why we don't have the name caregiver in the

[00:08:13] ACAP name, adult children of aging parents is because so many people who really are caregivers don't see themselves as being a caregiver. They don't define themselves in that term. Right. And, you know, I, you said a lot there about caregiving and what caregiving is. And it's easy to see why a lot of people don't, don't really claim that title a lot because they maybe don't think about some of those simpler tasks rather than the ones that are

[00:08:43] so profound. You, you automatically know, but there are a lot of nuances in there about it too. Uh, any other thoughts about why people really are not just saying that I'm a caregiver? I think a lot of it is that, that it's taking care of somebody that they love. It's taking care of a family member. And so that's not a caregiver. I'm just taking care of mom or dad or, or a husband or wife or partner or, you know, or, or, or, or we, this is what we do as families.

[00:09:12] And so they don't define it as being a caregiver. Um, some just plain don't recognize, as you just said, that these smaller things that we don't define that as being a caregiver because we think of, you know, caregiver is this big, this big activity and this really intense kind of thing. Um, some I think don't want the designation. They don't want to see themselves. They don't want to see themselves as a caregiver either from their perspective or their

[00:09:42] loved one's perspective or just society in general. That that's a term that not sure we really want to put on all the time. Right. Okay. Wow. That's a lot. Caregivers do a lot. You know, our primary audience at ACAP is adult children of aging parents. Although we welcome anyone who's taking care of an older adult. And so it's kind, it's kind of a strange place to be in life.

[00:10:09] Here we are with people who have raised us from children and we're now adults. And suddenly we're cast in an opposite role where we find ourselves helping mom and dad with things they can't do anymore. Or maybe they just don't desire to do anymore. Um, as I certainly, as I get older, complexity is no longer my friend. And so I want things to be a lot simpler.

[00:10:34] So what strategies did you use when you became a care partner with your own mother? And what would you recommend for others doing the same with their parent or loved one? I will be honest that there is an awful lot of my looking back. My mother passed in 2016. And there's an awful lot that I look back on and go, golly, I wish I had known to do X or I wish I had done this differently.

[00:11:00] But my takeaways are, and one of the things that I really tried to do was simply to be respectful and to be compassionate, to really do for mom what I would want someone to do for me. Um, sometimes that was really easy. Sometimes it was not very easy. I get it. There can be some hard interactions.

[00:11:28] There can be some tough, tough conversations and tough times with people. Not always, but there can be those moments. I think one of the things that I tried to do was to realize that what was coming from her, any kind of negativity coming from her, really was coming out of that place of her being afraid. Afraid of what's going on now? And holy mackerel, what in the world does the future hold?

[00:11:56] I mean, that's a whole different ballgame. And as I age, I understand that more and more. I think about what it would be like if I, if somebody told me all of a sudden, I could no longer drive. Period. We're done. Um, or that I find my own. Yeah. Or I find my own body kind of sabotaging and, and it's doing things that I don't, I don't want it to do.

[00:12:25] And how do I turn back the hands of time to make it do, do something different? Um, that as we age, we go from being independent and taking care of people to not being able so much. Um, secondly, though, um, I would suggest be, being sure that anything, any decisions that

[00:12:50] are being made for a loved one, that they are involved as much as they can be. It's not doing it to them. It's doing it with them, in other words. Now, there are, there are situations that there is cognitive decline enough that, that that's not always possible. But if that isn't present, heavenly days involve them. Ask what they need. Ask what they want.

[00:13:19] And convey that you are there with them regardless and throughout. Um, thirdly, understand that your parent will always be your parent. I, I hear a lot of people talk about that. I've switched places with my parent. No, we don't. We may have switched roles in terms of taking care of things, but that's a role. That's an activity.

[00:13:46] That is not that we are switching roles with our parent or we are switching with our parents. Our parents will forever be our parents. And I can see where there would be some resentment there if you tried to do the other thing, because mom and dad have always known that you're the child. They are in charge. And now suddenly they feel that they're not in charge anymore. And it's tough for them to just kind of adjust to all of that.

[00:14:16] Oh, absolutely. That, that's a, that's a huge change for them. And relinquishing that, that they're the parent. They're supposed to do X, Y, and Z, not, not the child. Yeah. That's a huge adjustment and very difficult for people. Yeah. I would also suggest be observant and be a safe place.

[00:14:42] And what I mean by that is look and listen to what the loved one is saying, but look and listen for what they are not saying also. What is going well? What is not going so well? What are they not saying? What are they not showing? What are they feeling that they need to be guarded about? Possibly they don't feel safe.

[00:15:09] That, that if they showed whatever is going on, that they're concerned about what your reaction would be because it's really easy to go, oh, you know, the sky is falling and we need to do X, Y, and Z to take care of this loved one, parent or, or anybody else. And that's not always what is needed. Again, continually convey that you will be there for them and with them regardless.

[00:15:38] At the same time, definitely get as much information as possible about what is happening for them. So you are able to plan, hopefully stay a step ahead of whatever is going on. I've had a lot of conversations with people who say, oh, it's too soon to do X.

[00:16:01] Well, if that X, whatever that is, is coming through your head, then you know it's not too soon. Do it. Go on and do it. Just become aware of what the resources are, who you turn to, where you can go for whatever the need is. Avoid making promises that you may not be able to keep.

[00:16:30] There are so many people who promise mom and dad, oh, I will never put you in, quote, put you in a nursing home. That may or may be... That's a big one. That's a big one. That may be able to be accurate if there are plenty of supports around. But for a lot of people, it just gets to a point that there's no way to keep that promise.

[00:16:59] And quite honestly, there are a lot of situations that truly an assisted living, even a nursing home or a memory care, can truly be the most loving, the most compassionate, and the safest place for a loved one. Goodness knows, take care of yourself as a caregiver. And we hear this, and it is so hard to do.

[00:17:27] And I will be the first to admit, I did not do a good job of this when I was in the midst of things. But it's that proverbial, you know, put your own oxygen mask on first. It really does make sense because if you fall by the wayside, then where are you? Then where is your loved one? There is no resource then.

[00:17:52] And part of that is to develop a team of people who can come along beside you and be there to help, to take over if needed, to help take the load. For example, certainly family members. If there is any possibility of getting other family members involved, do. Friends. You need your friends. Absolutely.

[00:18:20] Just to give you a different perspective, to give you a change of scenery, just to be the shoulder to lean on or to cry on at times. Certainly develop medical people. Get to know your loved one's doctors well enough that if need be, you can be honest with them even outside of earshot of your loved one.

[00:18:49] Legal people, financial people, same kind of thing. Just be sure that you have that team of people around you and don't hesitate to let them know when you need some help. There are so many good nuggets in that. I mean, just huge amounts of information that people can use, and I really appreciate that. I want to focus on one thing you said about taking care of yourself. That is so very important,

[00:19:17] and it's something that I've spent many years worrying about myself because I know that other people are dependent on me. And so I'm thinking, if I'm not in good shape, then I can't help them either. So I think about that a lot. And we know that caregiving can bring a lot of joy to our lives, but we also know how stressful it can be. So focusing on that for a moment, the 2020 caregiving report that we've been talking about

[00:19:43] says that only about 41% of caregivers report their own health as excellent or very good. That is a huge number of people who are unhealthy, and that percentage changes all the time, and it's getting worse. So how do we account for the poor health of the caregivers? Oh, heavens. Caregiving can. It doesn't always.

[00:20:10] But it can take a huge toll on health, physical and mental, emotional relationships, spirituality, one's faith. Financially, every realm of life can be touched by caregiving and have a toll on it. Let me come at that a couple of different ways.

[00:20:38] Caregivers typically are at the, or often, are at the height of their career. The average age for a caregiver is 49 years old. That's pretty much the height, you know, kind of getting into the height of your career. Caregivers average 24 hours a week on just caregiving tasks. If there is dementia involved, it doubles.

[00:21:06] So you've got somebody who is spending this incredible amount of time in some form or fashion with some part of caregiving. But they also have potentially a full-time job. And certainly for single people, there's no question. They have to work. I was fortunate enough that I was able to stop work after several years. But a lot of people are not able to do that.

[00:21:36] They have to work. But in addition to caregiving and work, then there is a spouse or a partner at home. Often there are children at home that sandwich generation. There are other obligations and interests in the community, friends, community involvement, exercise, hobbies, faith communities.

[00:21:58] Plus there is this enormous stress of being a caregiver and being thrust into this situation that there is so much that is needed to know. And there's such complexity. And there's so much juggling going on, juggling of all work and home and caregiving, that there is a lot of stress.

[00:22:23] And people are sometimes caregiving can be very simple, but sometimes it's very, very complex and complicated things that they are trying to do. Lots of stress, as you said. Lots of exhaustion. Physically and mentally. A lot of times, if we're working, workplace benefits are not adequate, are not going to give us what we need.

[00:22:51] It's not going to give us the time to really attend to the caregiving. And it's not going to give us the time off for relaxation. We have to keep working. We have to keep trying to balance all of these home and caregiving and work activities. Sleep is difficult. Getting healthy meals is difficult. Exercise is difficult. Finding time to relax is difficult.

[00:23:19] Getting out from under the pressure and strain is difficult. But our bodies are made that we have to have restorative activities. We have to have rest. But everything that brings that rest and that restoration is really hard to come by. So we are continually on in just this continual state of being on all the time.

[00:23:49] Absolutely. And all of that really takes a toll on us health-wise. Wow. It is really a tough task. I mean, that is just so obvious. And, you know, you talk about people who are at the height of their career who are now also becoming caregivers.

[00:24:07] And not only is it stressful from the physical aspects of doing that, but, you know, the caregiving report says that about 61% of the people who are doing the caregiving are workers. They do have an outside job. And when I think about 24 hours of average caregiving a week, that's three days of work. And if you already work five days of work and there are seven days, you're a little overloaded. That's right. Yeah.

[00:24:36] So the other part of it then is looking at the finances. So if you're taking that time off or you're doing something that you need to do, what are the financial impacts here for caregivers? Huge. And let me underscore that in big, bold neon. Huge impact. And the impact is not just for now in the immediate, but the impact really is long-term. So let me talk about that a little bit.

[00:25:05] You're right. 61% of caregivers are working. One in six working adults is also an unpaid caregiver. That's a huge number. On average, caregivers lose $300,000 over the life of being a caregiver. That has huge implications.

[00:25:35] Plus, they spend now, round figures, $7,200 a year every year on those needs that the loved one needs. All kinds of things. Just quick math. That's $600 a month. Right. Right. That's huge. That's a lot of money. Absolutely.

[00:25:59] A lot of caregivers have to take on more debt because the financial needs for an older adult continue to go up. And so often, they don't have the resources to cover it. One in five caregivers, and I thought this was really significant. One in five caregivers reports experiencing high financial strain as a result of caregiving.

[00:26:28] One in ten is unable to afford basic expenses like food. That hurts my heart. Me too. It really does. That's rough. Absolutely it is. Caregivers who are working often have to rearrange work schedules. They come in late or leave early. They decrease hours.

[00:26:56] They take vacation time to take somebody to the doctor. They take vacation time to go sit with someone in a hospital. And in addition to all of that, while they are at work, many are distracted. Heavenly days. Of course they are. They're trying to make medical appointments and they're even just thinking about what's going on. And so they receive poor job performance reviews. That has huge impact.

[00:27:24] People need to work, but they're not able to be completely attentive to work. Okay. So then that impacts raises or their salaries or even their jobs. They don't have time to further education, to get any kind of promotions. They work for employers who are not the most empathetic relative to caregiving demands.

[00:27:55] One in 10 caregivers stops working completely or retires early just because it's just too much. That was my situation. It was too much. Could not do everything. That was sort of my situation. That was sort of my situation also is that, you know, I made the decision myself to return back to my hometown because mom and dad were getting older. And, you know, I felt like they could need, they could use some additional assistance. My brother still was working.

[00:28:25] And so they just needed someone just to be present, just to be there in case they needed something. And so, you know, I retired early and that had an impact on my retirement funds and that sort of thing. So, yes, I can see quite easily why that's a big issue.

[00:28:45] And that's right, Karen, that so many people make the decision either to cut back, not I have a friend who was heir apparent would have gone into the supervisory role. And she said, I can't because of caregiving. I can't do more. And so, yeah, it has huge impact in terms of the immediate dollars coming into the home.

[00:29:10] But it also reduces Social Security and retirement benefits. And so this is a long-term kind of impact. And just to be clear, it's not that mom and dad may be asking for that help in any way. It may be that you just feel that you want to be there and that you want to do that for them. Right. For all they've done for you. Absolutely. Absolutely.

[00:29:37] And, again, that's that it can be from kind of an innocuous, no big deal kind of thing all the way up to very, very complicated, very involved and intense caregiving. Right. The other thing that happens, and this kind of goes back to the conversation earlier about health care,

[00:29:54] is that so many caregivers are now finding themselves with difficult health situations because of the stress, because of what caregiving or the balance. It's not just caregiving, but it's trying to balance all of those things. And so then that means that at the time when their incomes are reduced, their future financial stability is compromised,

[00:30:24] then they have health issues that include or mandate additional cost for their own health care. So, yeah, caregiving impacts not only the individual, but also the family, and not only the individual immediately, but long term. The individual, the family, companies in corporate United States, the labor force, communities, and our entire nation.

[00:30:52] Lots of conversation these days about the impact of it. The implications for this are just huge, just huge. And we've talked a lot about the impact on caregivers. And let's spend a little bit of time talking about the impact on care recipients as well. You know, we mentioned when we started that there were more than 53 million adult caregivers in the United States, and that was the number five years ago. It's increased since then.

[00:31:19] And about one in four of those are providing care for more than one person. That would bring the number of care recipients in the United States today to like 65.5 million people. That's a huge number. That's, what, one in five Americans that need some sort of care? So it stands to reason that there are a lot of people out there who are finding themselves in situations where they need someone to help them.

[00:31:48] From your personal experience and what you've learned through ACAP in the last 13 years, what can caregivers do to ensure that their care recipients live their best lives for the rest of their journey? That's such an important question. I think first, pay attention. Just pay attention to your care recipient, to your loved one.

[00:32:15] Just be aware of what is going on for them. Spend time with them, not as a caregiver, but as someone that you really care about this person. And they really care about you. Remember, as you said earlier, we don't want to be in this situation.

[00:32:39] We don't, you know, when we were younger, we don't think about what will it be like when I am potentially much less capable physically and mentally than I am now. That's a hard transition. Because when you're young, you're going to live forever and you're going to be healthy until the day that you die. Absolutely. You don't think about all these other things that are going to take place. That's right. That's right. Yeah. Be patient. Definitely.

[00:33:09] And that can be very difficult at times. But try to be patient with people. Everybody is going through something. And when I'm saying be patient, that certainly is with the loved one, the care recipient. But that is with everybody that you encounter. Everybody is dealing with something. Educate yourself about, if we as the caregiver are more educated about what our loved one is going through,

[00:33:38] then that helps us help them because we are more calm. We are more aware of what is happening and what might come in the future. Find ways to give them independence whenever and however they can have it. And again, that can be a challenge depending on the situation. But try to find those nuggets, as you call them.

[00:34:07] Try to find those nuggets, those opportunities that they get to choose. Have honest conversations with them. They can see through the fakeness. They can see through what, you know, if we're trying to come to them or at them with something that isn't really authentic for us, they'll see through that.

[00:34:35] And that's really important to remember because these are the folks who raised you. They know you. They know your authentic, original voice. And if you aren't using it, they see that immediately. Right. You can't hide that. Right. I heard a long time ago something about that the parents said to the adult child, I installed those buttons. I know how to push them. Right. Kind of the same thing. Yes.

[00:35:02] And for your loved one as well as for yourself, know when to seek help. Know when to ask somebody else to get involved because that not only helps take care of you as the caregiver, but it also, anything you can do for yourself as a caregiver really does help your loved one. Right.

[00:35:28] You know, I'm reminded Rosalind Carter had this wonderful quote, and it's quoted lots, but I think it really does. It really is apropos to what we're talking about. And her quote is there are only four kinds of people in the world. Those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.

[00:35:57] That's exactly right. Yeah. Yeah. That is exactly right. Yeah. Frances, thank you so much for the great insights and tips. They are so helpful. I've learned a lot today, and I'm sure our listeners have too. My pleasure. And thank you to our listeners and our viewers. Hopefully, you have learned some things too. If you haven't already done so, please be sure to check the like button below your video screen. And if you'd like to hear more of our broadcast, click the subscribe button as well.

[00:36:27] We also want to say thank you to Pace at Home in Newton, North Carolina, for sponsoring all of our caregiver community podcasts and to Every Age, our sustaining partner. Please join us again on Friday, April 4, for our next episode. You can view the replay of today's program through our ACAP community website at www.acapcommunity.org

[00:36:51] or find the audio podcast as part of the Mesh network of online shows and podcasts. You'll find our podcast on any platform where you listen to podcasts or on our website. While you're on our site, we hope you'll take a few minutes to learn more about ACAP, our free educational programs, and our local community chapters offering in-person programs. And if there are other topics you'd like us to address on our first Friday's Lunch and Learn,

[00:37:21] please leave that for us in the comments section of our YouTube video or by emailing info at ACAPcommunity.org. Until next time, be well. Bye for now.

[00:37:47] You've been listening to The Mesh, an online media network of shows and programs ranging from business to arts, sports to entertainment, music to community. All programs are available on the website as well as through iTunes and YouTube. Check us out online at themesh.tv. Discover other network shows and give us feedback on what you just heard.