Adult Children of Aging Parents (ACAP)

Ask Dr. Mia: Conversations on Aging Well Transcript Ep.6

Intro 00:03

Welcome to ask. Dr. Mia Podcast conversations on Aging Well, this podcast is for educational and informational purposes only and solely as an educational tool for your own use. Dr. Mia is not providing medical, psychological, or nutritional advice. You should not use this information to diagnose or treat any health problems or illnesses without consulting your own medical practitioner. For more information, including transcription, please go to miayangmd.com. That's miayangmd.com. And now our host, Dr. Mia. 

Dr. Mia 00:35

Welcome to ask Dr. Mia Podcast. Today I have two special guests with me from the Adult Children of Aging Parents community, ACAP Community is a nationally unique 501 nonprofit organization that provides information, resources, support, and community for adult child caregivers so they may better care for their aging parents and for themselves. They have free monthly face to face and virtual educational programs offered throughout local chapters in North Carolina, Georgia, and Pennsylvania, providing needed information on connecting informal caregivers with community resources via program speakers, business sponsors, and other caregiver attendees. In addition, ACAP provides audio, podcast and annual conferences. And I heard about ACAP through the podcast, actually. And the framework for all Acap programs is a nationally validated and copyrighted curriculum designed by founders and presented by local experts in aging and family caregiving. 

Dr.Mia 01:40

While programs are designed specifically for adult child caregivers, attendees and podcast listeners include other family members, friends, and senior services professionals. So today I'm going to have Bob Cain and Frances Hall introduce themselves. Bob, would you like to go first? 

Bob Cain 01:59

Sure. Hello, I'm Bob Cain. I'm out of Winston Salem, North Carolina. I work with a company called Piedmont Home Care, but I volunteer with ACAP. I'm a chapter mia, you mentioned in the introduction the chapters, so that's the heart, the lifeblood of what we do and so I'm a chapter coordinator. 

Dr. Mia 02:17

Perfect Bob and Francis let's hear your introduction. 

Frances Hall 02:22

Thank you. Mine can be very quick. I am Francis Hall. I am the founder and executive director of ACAP( Adult Children of Aging Parents) or ACAP Community is the official 501 organization. So thank you so much for having us. 

Dr. Mia 02:39

Thank you. Thank you. Francis and Bob, I think you guys do great work and Francis, I know you founded ACAP. I'm curious, what inspired you to found ACAP and how is it uniquely serving adult children? 

Frances Hall 02:53

I jokingly and yet not jokingly say that I created ACAP for me. My mother had moved from the home that she grew up in Alabama to be near me in North Carolina. She had received a diagnosis of a rare form of cancer, and we really didn't know what that future was going to look like and so she came to be near me, and it was a very difficult transition, very difficult move for her. And consequently for me. I was working full time at a small university, Lenoir Rhyne University, and literally sort of ran out the door every other day saying, mom has an emergency. I'll be back sometime. And it may be later that day, it may have been the next day, it may have been a week from then in journeying with her. 

Dr.Mia 03:43

What I found is that although I knew her and loved her and wanted to be helpful, I didn't know the resources. I haven't a clue who to turn to help us navigate all of this. And then I started realizing that there were lots of other faculty and staff who were in the very same boat and so started gathering them together, inviting them to come and let’s have lunch together once a month. Jets really started it as a support group to just share, thinking that somebody may know something that could be helpful to someone else and within several months realized we're not really helping each other, we're just sitting around and talking. And so started having speakers come in. And then about a year and a half later, people in the Hickory community started saying, and when are you bringing this into the community? 

Frances Hall 04:34

Because we can't get to the campus for lunch, I started offering the program in the community and as they say, the rest is history. It started growing and has grown way beyond the Hickory community and has wonderful people involved with it, like you and like Bob and like lots of other people. But I think you also asked about how ACAP is unique or how we are uniquely serving adult children when we say that ACAP is a nationally unique program. From our research from the beginning, even until right now, so far as we can tell, ACAP is the only organization or the only program that is specifically geared to support the adult child who is caring for or advocating for an older adult and a parent in particular or a loved one who is an older adult. 

Frances Hall 05:33

This lane, if you will, of being really clear that our mission is to provide information, resources supporting the community, exactly what you said for adult children. That in itself is unique. Another uniqueness is that we don't have the word caregiver in the title because so many who really are caregivers don't consider themselves caregivers. If you look down the long list of caregiving activities, they certainly qualify, but they don't see themselves as caregivers. For a long time I didn't. It was just I'm doing what my mom needs, I'm just helping and so they don't consider themselves caregivers because they're not doing hands on kind of care. But the reality is all are caregivers. ACAP is not disease or condition specific or related that we have done the research. 

Frances Hall 06:30

We've gone out and done the research on what all of the topics that caregivers need to know about, what they need help with in terms of training and that's what our curriculum is geared toward. Another uniqueness is that we have a nationally validated and copyrighted curriculum that we offer. All of our programs are part of that curriculum. And it's organized in such a way that if someone attended programs for a chapter all throughout the entire year, they would have had two programs on each of the topics that caregivers of older adults are telling us that they need help with. And I think the last thing particularly coming to my mind is that there are lots of wonderful, absolutely excellent programs in pretty much every community that can help caregivers. 

Frances Hall 07:24

But what ACAP does, our format is that our chapters offer one program a month and part of what we have found with that consistency of same day, same place, same format, a program of every month, then there is a community. Not only are caregivers finding the support they need and the education and the training they need, but they also are finding community because they get to know others. They look around the room and they go, oh, I'm not by myself. And so often caregiving can be so isolating. So there's that community that evolves because of the format of what we are doing. 

Dr.Mia 08:05

Absolutely. Frances yeah, I was just reflecting on the fact that I was helping my mom, who has her own cancer diagnosis, with some medical issues and I also don't consider myself a caregiver. That word sounds a lot more intense and hands on than what I'm doing and I'm glad that you talked about that specifically and how that may be different for the adult children versus, say, spouse or some sort of partner for the older adult. And Bob, what is your role within ACAP as well? I know you have both caregiving experiences personally and professionally. How did you get involved in ACAPand how has ACAP helped you and your caregiving roles? 

Bob Cain 08:49

So starting with the professional side of caregiving, I was an administrator for a local assisted living here in Winston Salem. So I took care of 78 people with a team of direct caregivers. Became the POA for a 93 year old neighbor who had outlived everyone and feisty as could be, but needed personal one one care, which I did. And then kind of the navigation piece. Most recently, I guess, I became a for real and for true a capper just before the passing of my father. Helped him, did overnight shifts through the hospital and nursing home rehab stay and that was very important and meaningful. But for me, I think, my focus has been helping people navigate. And so again, from the ACAP perspective, I was able to help guide my mom through questions that she had, difficult conversations. 

Bob Cain 10:31

My very stayed, amazing mother broke down in tears when she said, I need to tell your father something, but I can't because it will disturb him too much post stroke and so I said, may I say it for you? And it was a beautiful moment of giftedness to be able to help with that. And I think that's kind of at the heart of what we do is saying, can we help you say the things that you need to say to your parents? That's the uniqueness, again, of what Frances was talking about was many of our talks, quite frankly, the subject matter is the same that AARP and a number of other great organizations give, and we collaborate with them. But, yeah, it really is coming back down to that unique relationship. Again, everybody's welcome. We do have spouses come. We have professional paid caregivers who come to the meetings. 

Dr. Mia 10:34

Frances, did you want to comment on that? 

Frances Hall 10:37

Well, except just to say that it's people like Bob that we talk about, that being a caregiver is an everybody issue. ACAP is an everybody issue. And so I just continue to be so honored and so humbled for people like Bob to get really involved with ACAP, people who have professional expertise, but then they get Acap because of not only their professional expertise, but also the personal heart and it's just really wonderful to have people like Bob and even Dr. Mia, you, when you did the podcast, really be able to share with our listeners, with our attendees, that being an adult child, you find yourself in some very difficult situations, personally, some very difficult situations and to be able to come alongside and to help people understand, how do you do this? Because it's overwhelming, it's an honor, and it's a labor of love. 

Dr.Mia 11:51

Absolutely. And in terms of ACAP specific programming, what are some example offerings or programs within the ACAP community that gets each of you excited? 

Bob Cain 12:04

The most exciting one for me was actually on our national website. ACAPcommunity.org is a podcast with Alyssa Botte, and I can't remember the title now, but I'll butcher it and say it is dealing with family dynamics. What are you going to do about that sister from California who's telling you in North Carolina what you're doing wrong? So sibling dynamics and not a gripe session by any means. Alyssa is so gifted. She's a chaplain in social work by training, and she just walked us through some very practical insights and structure to say, here's the problem now, what are some good solutions to really deal with it in a productive and efficient way? That one's my favorite. 

Frances Hall 12:50

That is a good one. That's a really good one. I think for me. Colleagues,, we have had so many amazing programs, both podcasts as well as programs that people can attend in person or virtually or through the video afterwards. When I think of innovation, I think about some of the things that we are getting ready to do or have just begun to poke our toe into, if you will and two in particular come to my mind. One is we've talked about the podcast. We are getting ready and we don't have a timeline on it, but probably later this year in 2023, we are going to be taking our podcast and our podcasts. Also our audio, but we're going to be turning them into videos also. In addition to the audio podcast, we're going to have the video. 

Frances Hall 13:44

And I think that's called a Vlog video log. But we also are moving toward using that same platform, I think that's the proper term, but using that same recording and also turning it into lunch and learning. Because we know that there are lots of people who would love to come to programs, but all of our programs at this point are in the evening because that's where most people can get to them, but they could take their lunchtime, their twelve to one and watch something. And so we are planning to move in that direction with our podcast. So the podcast will be serving us in multiple ways, serving us and serving listeners in multiple ways. 

Frances Hall 14:34

The other thing that we are beginning to do is through chapters like Bob's encouraging chapters to connect with the HR offices, the human resources offices, in companies, in corporations and businesses, to let them know about ACAP in their community so that they can then share ACAP with their employees. Because we know that when we look at our target market, when we look at the people who really are needing ACAP, it's going to be those people who are working and so what we are trying to do is to interface very directly with those people. So that's just beginning to be something that the chapters are doing. So stay tuned. But that's where we're going with that. 

Dr.Mia 15:26

That's very exciting. I think being an adult child and working also oftentimes full time and having those caregiving type tasks is really what creates that feeling of being overwhelmed and just not enough hours in the day and coming back to perhaps what Bob had mentioned in terms of the podcast episode with Alyssa and some of the programming that ACAP community is offering in multiple different ways, what would you say are some of the top three things you would want adult children who are caring for aging parents to know? 

Frances Hall 16:03

The first thing that comes to my mind is you are not alone. The second thing is there are resources. and I'm going to put a plug in for an organization that I often refer people to and that is the Area Agency on Aging. Area Agencies on Aging serve every community in our country and they typically have someone who is the caregiver. I think the title is something like Family Caregiver Support Specialist and so these are people who can help point people in the direction of local resources. So if all else fails, that's a really good way to go. The third really is I guess very honestly, it's just that I would encourage people to be looking for what are the resources in their community, both in person as well as online. 

Frances Hall 17:09

That comes under that heading of resources and ACAPis a great place to find out about resources. Not only do we have the speakers, but we also have sponsors for each program, and so people can learn about the local resources. But I guess it all comes under the heading of you're not alone. It may feel like it, but you really are not. There are places to go, people that can help. So I'm not sure if that's three, but in that rambling, I think I can pull out three in there somewhere. 

Bob Cain 17:43r

My first that always comes to mind is to start sooner. Working professionally in the senior healthcare industry, I hear it from folks independent living or even home care all the way through the end of life services with hospice, people say, I wish we had started sooner. There's this hesitancy and reticence to just kind of jump in. It can be incredibly overwhelming. And so I think that swirl scares people away. I've drawn a diagram that I use for teaching, and it's very linear, and it shows a 30,000 foot view. But a friend of mine drew this diagram that shows the universe, and it just makes you feel like you're in a thin cycle in a washing machine. And hers is more emotionally accurate, I think. When you start this journey, gosh, where do I turn? 

Bob Cain 18:30

And I feel like I'm being turned while I'm figuring out where to turn. And I'm learning all this language that I don't understand from people with titles I don't understand. And so, yeah, all the more reason to start early. ACAP is a great place to get that information. Yes, the Area Agency is a great place to get all that information. Number two, have a plan B. Talk to a lot of people. I don't talk to enough people who've made a plan A to begin with, but if you've made a plan A, make a plan B, because suddenly mom has that downturn in her health, and it's like, gosh, that lovely. Assisted living, we had it all lined up, and it was reserved on the wait list for a bed, and everything was great and then suddenly now she needs nursing home care. 

Bob Cain 19:14

And assisted living is a distant dream of the past, and we don't understand nursing home care and what that can offer. So now we have to start over. So please have a good plan A and a good plan B. The third for me is I have to give a lot of bad news to people. I'm a generally happy, helpful person, but what I call the wishing trails. The wishing trails? You're trying to help mom, and you just believe that just down that little path, off the main path, there's the perfect answer for mom and I have to come put my gentle arm around the shoulder and say, listen, you're going to waste a lot of time going down that path because it's the dead end, and that time you're going down there. Mom needs your help. 

Bob Cain 19:58

One of the biggest practical things I see on that wishing trail is that people just think, because mom and dad or themselves, the patients themselves, paid for Medicare, that Medicare is going to pay for everything for them. Oh, my word. Medicare pays for very little in very strict settings and for a very short period of time. So you need to plan financially, know what you're going to get into there as well. 

Dr.Mia 20:21

Absolutely, yeah. I think that wishing trails is so common, and I think it also goes with the global hesitancy to talk about aging, perhaps poorly, although we're all aging and there's no judgment on how you age, but I think sometimes people think that there is a perfect answer out there and they just have to find it. But, most of the time, there is no perfect answer whatsoever. There's just the next best decision based on what you know and can decide at that specific time. 

Bob Cain 20:54

And I failed to mention earlier that Alyssa worked closely with you at the Sticht Center previously, but I want to give her credit. I think she's the one that taught me the difference between regret and guilt. So I think a lot of adult children drift in and out of guilt, and sometimes it's really the better emotion, if I may substitute emotions would be, I regret that this happened, but I can't take on the guilt and beat myself up about it and linger on that because I don't have time for that emotion. I think it's an important distinction to understand, because they're going to be regretful. Like you said, nothing's perfect. You're not going to have perfect solutions, and people beat themselves too much about that. Also tell people to give themselves the measure of forgiveness. 

Bob Cain 21:37

Maybe you do make the wrong decision and it's beyond regret. You do feel guilty. If you're making the best decisions you have at the time with the information you have at the time, then you've done your best, even if it turns out later that you go, wow, I really should have got zigged when I zagged. 

Frances Hall 21:54

Well, hindsight is always 2020, right? 

Bob Cain 21:57

Yes. 

Dr.Mia 22:00

All right.

Bob Cain 22:02

I was just going to say a couple of things that were kind of lingering for me and appreciate Frances' kind comments about me. There are a number of what we call “LT's” leadership teams. So our local chapters, they don't happen without the dedicated volunteers on the leadership team, and there's anywhere from ten to 16 people on each area chapter team and so I'm just thrilled those people that I serve with and the folks in the other chapters who do that across our nation and growing. So anybody who's listening to this says, yeah, I could give a little time to help an LT. We would love to have you. One other point that came up, and France has been very good. ACAP started as a support group and then transitioned into education. We are not a support group. 

Bob Cain 22:47

Occasionally, we get that misunderstanding, people show up and think there's going to be a facilitator and they're going to come talk. It's professionals coming to give wonderful content information. So we are not a support group, but we are very supportive of support groups. We cross refer back and forth and they send folks our way and we send folks their way. So I always like to point that out. 

Dr.Mia 23:09

And Frances, how could people who are interested in joining or starting new chapters get in touch with you? What's the best way? 

Frances Hall 23:18

Let me go in two different directions. One is to find out about programs and to join programs. Bob has just sort of talked about that. There are lots of ways of getting involved. One is simply to attend the programs and you can find all of the information about all of the programs on our website, which is www.acapcommunity.org. That's ACAP Like Adult Children of Aging Parents. ACAPcommunity.org on the website, on the home screen. If you scroll down a little bit, you'll find all the upcoming programs on the right side, on the right column, but under I think it's an events tab, you'll find a calendar that has all of the programs that have been scheduled for the rest of the year. So if there is an Acap chapter in someone's area, definitely we would love for you to attend the programs in person. 

Frances Hall 24:20

If for whatever reason you're not able to attend a program in person or you live somewhere that there isn't a chapter, join us virtually. Most of the chapters are offering their programs virtually or view the video afterwards. It will be on our website or YouTube, under ACAP Community or through Facebook. There are several different ways to view the videos afterwards. So that's just kind of becoming part of attending programs and getting those resources. And you'll find on the website lots of other resources there to become involved with a chapter, as Bob was saying, if there is a chapter in your area and you are interested, you have a background in some form or fashion, you have a background serving older adults or family caregivers. The chapters would love to know about other people who want to get involved on the leadership team. 

Frances Hall 25:22

That would be fabulous for people who are in areas where there is not an Acap chapter. We are growing a lot. I'm in conversation right now with people in Pennsylvania, Massachusetts, Florida, California, Minnesota, Texas, more Georgia areas, and Virginia. It's extremely exciting what is happening. But if you are interested in a chapter, simply get in touch with me and you can find me again. On our website. There is a contact us tab that they simply click on that sends me a note that they are interested and I will be back in touch with them. And we are putting together some additional information that will be going to people who are interested in starting a chapter or at least even finding out more about a chapter? And would a chapter work in their community? 

Frances Hall 26:22

I will tell you that we have found some things over the years. We've learned some things about what works and what doesn't work. One of the things that we have found is that chapters need to be in communities of at least 40,000 people within a county of 100,000 or more. And if at all possible, that would have a network, a professional network of people who are working in the senior services industry. I'm not a numbers person for numbers sake. But what we know is that with needing to have twelve different speakers in a year from twelve different organizations needing to have probably 24 to 36 sponsors in a course of a year, again, from at least twelve to 24 different organizations. 

Frances Hall 27:18

Plus having, as Bob was saying, ten to 14 to 16 or more leadership team members just have to have a community large enough to support all of that. So if people are interested in considering starting a chapter, we have a format by which we give information and are able to talk with people and to make sure that everybody knows exactly what it means to start a chapter and I would love to have conversations with more people about starting a chapter. The growth is exciting and we are very pleased. 

Dr.Mia 27:57

Sounds like there's a lot of coordination that happens behind the scenes to make all the programming work and to have lots of people talking with each other. So it's quite an undertaking. And thank you both for all of the volunteer work and the hard work that you put into bringing these educational resources to adult children caring for aging parents. So thank you all. 

Outro 28:23

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