Caregiving Blog: Effects of Being a Caregiver

This is a transcript from a radio interview on CUTV News Radio with host, Jim Masters, and caregiving expert, Pamela D. Wilson about the effects of caregiving and being a caregiver on the family The show aired on July 25, 2019. The podcast is available on the media page. 

The Effects of Caregiving

00:36 Jim Masters: It’s always a pleasure to welcome you to the CUTV News Radio Live experience, one that we craft every single day with a multitude of episodes, and also spectacular guests that our team seeks out and finds and brings to the table to us so we can have an opportunity to engage with our guests and learn from our guests, and our guests have this wonderful opportunity to share the wisdom, and perspective, and knowledge, the resources, the tools that they have in their given career path, and in their life experiences as well. And we feature folks from all around the world from every background and culture, demographics, industry, and so much more. So it’s always exciting when we get a chance to engage with you, our audience, around the world as well. You’re exclusively on CUTV News Radio Live, and also for me personally to engage with one of my favorite guests, Pamela D Wilson.

01:36 Jim Masters: I’ve had an opportunity to actually meet Pamela in our studio to do a full interview with her at our studio and a multitude of radio shows, and also, we got a chance to spend some time when we were visiting Colorado as well. Where it’s a beautiful place where she is based with her husband and family. And speaking of family and more, that is a central role and figure for what she does and a central theme for what she does because she’s an extraordinary individual when it comes to knowledge and expertise about caregiving. She is authentic, trustworthy. She’s a caregiving expert advocate, a speaker, also author of the book, The Caregiving Trap, and her brand, The Caring Generation, began with a radio program of the same name as well. And information about how to listen to The Caring Generation radio program is available on her website as well.

The Dilemma of Being a Caregiver

02:38 Jim Masters: You know, someday we will also face the inevitable dilemma of being a caregiver. The options we have to keep aging parents, spouses, and loved ones at home or place them in the care home can be overwhelming and daunting. The experience leads to stress and unexpected tragedies. One exceptional woman, who is our guest, as we continue our exclusive series with her, Pamela D Wilson, is paving the way to share proven solutions and resources for caregivers and aging adults. And when we talk about caregiving, we’re not just talking about making sure that they’re tucked in the bed, or that they have the food they need, the person that’s being cared for. There is a wealth of other things that come to play that most people don’t even think about the finances, the family, making provisions, being flexible. Also, taxes and estate planning, and there’s a wealth of things to think about, and she really covers it all in The Caregiving Trap and in our conversations.

03:46 Jim Masters: And until one becomes a caregiver, there is little, or really no discussion, about the roles, responsibilities. Some people, they say the topic’s morbid, or will wait till it happens, or whatever. And you really want to be prepared, and you want to take preventative measures. No matter whether you’re a 20-year-old or you’re 80 years old, it doesn’t matter. Being prepared in all aspects of life is essential, and sometimes things happen quickly where all of a sudden, you’re thrust in to becoming a caregiver, and you weren’t prepared for that to happen in your life, and you don’t have the tools, resources, and then you go scrambling, and you can get mixed messages. So, you want to deal with experts like Pamela D Wilson. People who know it actually personally in her own family as a caregiver, but also have the tools, and resources, and experience to guide and help others as well.

04:47 Jim Masters: She’s extraordinary at what she does. Her online power of attorney course is about how to manage medical care and the importance of appointing the right power of attorney, in fact, to help with medical decision-making and care needs because it gets really emotional too for many people, and you feel like you’re stuck. You don’t know what to do. What’s the right way to go about things for you and the rest of the family, for the person you’re caring for.

Valerie Harper Battling Brain Cancer and Hospice

There’s so much to think about. And in the news right now, actually, which I’ll mention to Pamela when I bring her on in just a second, you’re seeing the story of their beloved actress, Valerie Harper, who has been battling brain cancer, and then went in to remission, and now what her husband has said publicly just about two days ago is unfortunately, the end is near, and of course, you know her from Mary Tyler Moore and Rhoda, beloved specials and movies.

05:45 Jim Masters: And her husband has been dealing with this for a while, and she’s in the public eye, of course. And the doctors are recommending hospice, but he doesn’t want to put her into hospice. He says, “I’m going to be there for every step of the way until her last breath.” Very moving, very emotional, but here he’s stepping up, and he wants to care for her as best probably at home. So, there’s a whole other… a ball of wax that becomes really evident when you do that, and it’s a beautiful, loving thing. There’s a lot of things to consider. Pamela knows about all of this, so let’s welcome her back to CUTV News Radio Live as we continue our series together. Pamela, welcome back to the show. Always a pleasure to have you with us because you impart such wisdom, and perspective, and great information that’s vital to us all. Good to have you back with us on the show.

06:47 Pamela D Wilson: Thank you. I’m so glad to be here today.

06:50 Jim Masters: It’s a pleasure to have you with us. Did you hear about that story with Valerie Harper and what her husband has decided? And the doctor’s recommending hospice, but he doesn’t want to do that for her or with her, put her in a hospice facility, he wants to care for her at home and make her as comfortable as possible because I guess the end is very, very close unfortunately. You hear stories like this all the time, whether it’s a public figure, or a beloved actress like a Valerie Harper, or just somebody across the street. It can be really painful and emotional, and a lot of decision making like that that is thrust upon you, right, Pamela?

Making End of Life Decisions

07:34 Pamela D Wilson: Well, it does, and I did hear of the story. And over the years in my role as a court-appointed guardian and a medical power of attorney, I was in the situation that he is with Valerie, where you have to decide what you want to do about end-of-life care. Whether it’s comfort, whether you withhold treatment. And those decisions, oh my gosh, they are so emotionally challenging. I had, I’ll talk about a couple of client situations, but I had one gentleman who I actually became a volunteer guardian because he was in a hospital, and there was no family, and they couldn’t find anybody. So, it was over Christmas, and I said, “Yes, I will help this person.” He was on a ventilator, he had feeding tubes, he recovered a little bit, but then he started having all those aspiration because of breathing issues and things. And I had to make the decision to remove the feeding tube, which ended his life. And I had to think about that for days because I thought, “Oh my gosh,” I felt personally like I was killing him.

08:33 Pamela D Wilson: But yet, in talking to the doctors, there was nothing that could be done. He would just keep going back to the hospital, and they would suction his lungs, and he would get worse. And he passed away, peacefully. But the decision… And hospice, it’s a subject that so many people don’t understand. There are physical locations that people can go to, but I’m sure Valerie’s husband is accessing, having all these workers and care people come into the house to care for her. I’d also had clients with brain cancer, and it is, it’s horrible.

09:06 Jim Masters: Yeah, absolutely. Absolutely. I want to remind our audience that you’re back for the second half of our exclusive eight-week series of caregiving discussions, and this is week seven. And folks can go back if they want to learn more about this incredible topic and the conversations we’ve had, they can go back in our archives on CUTVNews.com. And of course, you will be back with us, Thursday August 1st, as we continue the conversation that is so vital to us all. This is, again, wonderful to have you with us, because for listeners who have not heard you before, share a brief background, if you can, and let us know some of the really important things that you’re currently working on, Pamela.

Help for Working Caregivers

09:54 Pamela D Wilson: I was a caregiver for my parents who passed away, it seems like forever, but 20 years ago. And I’ve always loved older people. My mom was kind of like the caregiver in the family. She passed away, then my father passed away, then my brother, and I had a sister who was killed in a car accident when I was 17. So, I changed careers to help caregivers. And today, what I try to do is reach caregivers wherever they are. And that could be wherever they are in the caregiving relationship, if they’re just starting out, or maybe they are at the end, and they’re having to decide about hospice care and end-of-life care.

10:27 Pamela D Wilson: And I do that through my website, which is PamelaDWilson.com. For people who like to read, there’s an online library, there is my book, The Caregiving Trap. For people who want to listen, there’s my radio program, and all the podcasts go on the website. I have a channel on Roku TV. So, like we talked, caregivers are everywhere. There are people out there who are helping loved ones that don’t call themselves caregivers. And I’m trying to reach one million people so I’m trying to be everywhere, on my website, on social media channels, just to be available to help people when they need help. Because a lot of the family relationship problems, in some situations, are more complicated than, like you mentioned, the daily care of, yes, we’re making sure they have food and prescriptions, but sometimes families just don’t always get along.

Sometimes Families Don’t Get Along

11:20 Jim Masters: That’s right. And sometimes you don’t realize that until these things happen and the stress and the pressure of it all appears, and then you see the divide that happens. “Well, I don’t have time to care for this person, I’ve got a career,” or, “Well, she wasn’t that nice to me,” or, “He wasn’t that nice to me growing up,” or whatever it is, everything, all of a sudden it sort of rises to the surface. And now that you’re dealing with all these things, I guess that we’ve not spoken about until now. And that can really get in the way of the care of the person too.

And you found some really cool research, and it’s this research study giving statistics about children age 8 to 18 who are caregivers. It seems unusual that children would be involved in caregiving. Tell us about this incredible information and your experience as well. And I know sometimes, which is another area that we can maybe touch upon, if the parent maybe is dealing with alcoholism or drug abuse or whatever, oftentimes, the child is the parent and the parent becomes the child as well, so that’s a whole other kind of caregiving that a child is thrust into as well.

12:50 Pamela D Wilson: It’s amazing. You know, when I found this research then I looked at myself, and I’m like, “I get this, but we don’t talk about children being caregivers.” And again, I think it goes back to the fact that helping a loved one, people don’t identify and say, “Well, if I help a loved one then I am a caregiver.” And what the research is showing is that, let’s say that a parent needs care and obviously the other parent is doing the caregiving, but they may need help from their children, they may not be able to do everything.

And so, these young children, between 8 and 18, are doing caregiving tasks that somebody who’s in their 50s or 60s or 70s would be doing for a parent. They may be helping with bathing; they may be helping with feeding. And when I look back at my own history, my mom was ill. I mean, I remember late in my… When I was 7, 8 or 9 years old, and then in my teens, it got significantly worse where she started having heart problems and was in the hospital and doctor appointments and trying to manage all the insurance things.

Children Who Become Caregivers

13:55 Pamela D Wilson: So, I, in a sense, was in this bunch of children who were caregivers, but I had no idea I was caregiving. Mom would say, “Can you do this?” and I’d be like, “Yes, I’ll do that.” And in the more severe situations, like you mentioned where the parent is on drugs or alcohol, those are tragic situations because it affects the child the rest of their life. They may be having problems in school or adjusting to learn how to communicate or be friends with other children. They may be isolated in the household. Some of those early caregiving experiences affect people for the rest of their lives, and we don’t realize that that happens and there should be more help out there. We should be talking more about these children who are caregivers and finding ways to help them.

14:45 Jim Masters: Absolutely, right. And you are. I mean you are getting the conversation going, you’re bringing it to the forefront. That’s an amazing thing, but it’s got to be followed up in terms of people listening to your message and applying it to their own lives, which is really, really important. I mean caregiving is stressful for all ages, adult caregivers. That’s well-known, any of us who have done any caregiving certainly know that. What are the effects on children and young adult caregivers? Are they stronger? Are they less? Imagine for a kid or even in young adults, there’s a lot of fear too because now they’re seeing mortality, they’re young, and they’re enjoying life, and they think that they’re immortal and now they’re seeing a loved one or a friend in a serious situation. There could be a lot of emotional, stressful, fearful things that they deal with. And you probably see that all the time.

Things You Should Know About LIfe

16:00 Pamela D Wilson: I do, and it depends a lot on the family situation and how the parent, who is the caregiver, presents it. So, in my family, I think my family was very unusual, and I truly won the parent lottery because I have the best parents in the world. But I remember going to my grandfather’s funeral when I was five years old. And then between 5 and 20, oh my gosh, this is going to sound horrible, but they were dropping like flies. My grandfather, my older sister, aunts, uncles, you name it. I saw all these people die, and my mother managed it with grace. We would go to their funerals. She didn’t hide anything from me. She talked about the importance of being there for family members, and I think she did that to train us to care for her because I think I’ve mentioned this before, but she bought their funeral plans before she died. And she was very excited to tell me about this because she was saying, “Well, I don’t want you kids to have to go through what I went through with my dad. I want to prevent you from having to go through all this.” Which these young kids… Oh my gosh, they worry about, “What happens if mom or dad dies? Who’s going to take care of me?”

The Stress of Being A Caregiver

17:10 Pamela D Wilson: All this emotional stress, sometimes they attempt suicide, they get into drugs and alcohol. I was lucky because I didn’t have any of those traditional risks. I had a very good family. But not every family is like that. I had an uncle, this was back then, I would go visit him, and he had all these behaviors, and my mom would just say, “Oh honey, he’s senile.” Well, looking back today, I realize he had Alzheimer’s. But back then there was no talk about Alzheimer’s or how people behaved or any of that. And so, my goal in working with caregivers is that I know all of these things that happen. I hope I can help you prevent some of these tragedies in your families. The mistakes that happen. I’m so fortunate because a lot of my caregivers on Facebook are very verbal, and they will say, “Oh my gosh, Pamela. This happened, and you told me about it.” But again, I have  to reach a million caregivers with my goal.

18:08 Jim Masters: And I think that you will be doing that in no time just when people realize you’ve got your heart and soul in all of this, Pamela. This is a real legacy sort of mission that you’re on here, and it’s beautiful work that you’re doing because I know you. It brings you great joy knowing you’re helping others, and that’s the key. There’s a business side to all of this, but it’s in your DNA, and it’s representative of who you are. And I have no problem saying that to everybody because I’ve met you and I know your story and your passion, and I think it’s phenomenal work that you’re doing. When somebody is a caregiver, it’ll be fraught with frustration and stress and all these things we’re talking about. What is the experience like for now? We’ll move on, we’ve talked about the kids, we’ll talk now about the adults, the adult caregiver, maybe those who are 50-plus.

Why Didn’t Anyone Tell Me This?

19:11 Pamela D Wilson: For adult caregivers who didn’t have the childhood experience, it’s shocking because many times, believe it or not, there are people out there who are aged 50 and older who haven’t had a grandparent die, who haven’t had anybody in their family die. So, they’re coming into it from a point of, “Oh my gosh, why didn’t anybody talk to me about this? I didn’t know about this, and now I’m thrust into this caregiver role, and I have to do all these things, but I’m married, I have my kids, I’m trying to work. I may be going to night school.” And then it even extends older, so I have people on Facebook who talk to me, and they say I am 72 years old and my dad is 95, and I never thought I would have to do this. And so, there’s all these challenges of, the age we are, our family situation, how did caregiving get started. And then there’s all this other research, and I’ve run into this because I’ve been a power of attorney for single people, but people who are widowed, they don’t have children. There’s a term out there called elder orphans that’s coming up in the research.

20:22 Pamela D Wilson: And then LGBT individuals. My sister is one of those. She had a partner all these years, but today, she doesn’t. I’m her power of attorney. So, these elder orphans and other people, if they don’t have children or they don’t have family members, they have to plan even more for what happens when they need care. Because there may not be anybody right there who can step up. So, there’s the aspect of, okay, we’re thrown into caregiving, but what happens if we need care, and we don’t have family or a spouse or a partner to care for us, what do we do? We have to plan.

Having a Plan

21:00 Jim Masters: That’s right, plan is right, and you don’t want to have to scramble while planning. That’s why, again, the major central theme of this series and this conversation with you each week is preparation, prevention. You can’t be able to prevent everything, but maybe you can lower and tamper some of the chaos that can happen. What issues do elder orphans and LGBT caregivers face? You touched a little bit on the LGBT part seconds ago, but can you expand this a little bit further as well as elder orphans?

21:39 Pamela D Wilson: I can. So, the elder orphans, they would come to me at my office and say, “Pamela, I need a power of attorney. You know, I’m okay today, but I don’t have any kids, I don’t trust my family and my sister lives somewhere else.” And even I would have aging parents do that who didn’t have children or didn’t trust their children. So, the issues that they face is, okay, if something happens to them, they don’t have that power of attorney document, who is going to make decisions? So that’s where the planning aspect comes in more importantly, and then for people like my sister. I had a client in Denver who, his partner in California contacted me because this gentleman was starting to have health issues. And it was so funny because he’s trying to get me over to the house so many times, and the person who became my client kept refusing because he was stubborn. So, he was in the Air Force previously, he was a teacher, who were people to tell him what to do?

When Loved Ones Refuse Help

22:35 Pamela D Wilson: But never married, he only had this partner, his family was far away, no kids. So thank God for this wonderful man in California who got me involved, and the way that I finally got involved was the client fell, and he was in the emergency room. And so, this person from California called me, and he says, “Oh my gosh, can you show up at St. Joe’s Hospital? My friend is there. He’s angry. They’re not letting him go home. I need you to show up and do what you can.” So, of course, I showed up, and he’s like, “Who are you and why are you here?” and all of that, but I spent like six hours with him in the ER and finally by the time it was said and done, he saw that, one, I knew what I was doing, I had a good reputation in town. I talked the hospital staff into letting him go home, but the agreement had to be that he would let me manage his care. Which is what his partner was really trying to set up in the first place.

23:27 Pamela D Wilson: And so, I took care of him for a couple of years. He was an absolute delight. One of my favorite clients because he was so difficult, and he was able to stay home for a period of time. We brought hospice into his home. I was able to put him on the phone to talk to his partner before he passed away. It was just a really beautiful situation. But there was so much hesitation at the beginning, and again, he didn’t have family. Hewas one of these elder orphan LGBT people who didn’t really make a plan. But it worked out.

24:02 Jim Masters: That’s right. It’s, again, that story you just shared is very beautiful too. You went way beyond the “extra mile” there for your client, very caring of you to do that. And again, you said a difficult situation in the beginning, but you liked the challenge, and you always try to come out from different angles and comfort everybody, while also maintaining the fact that there’s things that need to be done and tasks that have to be dealt with, because caregivers become caregivers with little or no training. So, what are some of the more common concerns in addition to some of the things we’re talking about today, Pamela?

Caregivers Feel Like They Have to Do It All

24:50 Pamela D Wilson: You know, they feel like they have to do it all, and again, we go back to the fact that many of these people don’t realize that they’re a caregiver. And then all of this medical care, and other things show up. And so the things that I hear from caregivers on social media and through courses and things, they’ll say, “Well gosh, if I knew I was a caregiver, I might have a better idea of what I am supposed to do. I don’t know what I’m supposed to do, I don’t know what I’m supposed to ask.” And then once they are thrust into this, it’s like, “Oh my gosh, I’m so desperate, I’m so exhausted, my family’s not helping, I can’t do this, I’m emotionally distraught. What do I do?” So, we have all these caregivers out there who are stressed, and they don’t know that help exists, and this is just… Oh God, if I could just get on the soapbox. If I could have a national press conference, and tell people that help does exist, and trusted help exists. Whether it’s on my website, or they find somebody else. Help exists for caregivers, and they just, they don’t know where to turn. They don’t know how to find it because we don’t talk about it enough, which is sad.

26:00 Jim Masters: Right. And that really is the key. You have to talk about it, and that gets everything rolling. It’s really important to talk about it. It may seem hard in the beginning, but you’ll be thanking yourself and others in the family for talking about it early rather than when it’s at that crucial moment in the 11th hour. What do you think are the barriers in helpers and caregivers in terms of what they’re facing and knowing that help exists and finding help where they don’t search it out, they don’t ask for it, they don’t seek it out, and seek people like you?

26:44 Pamela D Wilson: Part of it is that they think they can do it themselves. So, I’ve had caregivers over the years who have said, “Oh, you know, somebody told me about you a year ago.” Or, “They told me about you six months ago, and now I’m here because it really is a disaster, and I can’t do this.” And then there’s all these other skills. I was doing research the other day about caregivers and understanding how a parent feels. So, like in this situation with this gentleman, he wanted to be independent, he wanted to be in control, and I was very empathetic with that. But my point was, “I know that I can help you. I can make this so much easier on you if you will let me.”

And so, caregivers have to pass that boundary where they feel like they have to be independent, they have to do it by themselves, and when they do ask for help, the sense of relief is huge. And because all my information is on my website, caregivers can be anywhere. They can find me at home. They can find me at work. They can join my courses, participate, all of that. You don’t have to go to a building anymore. Everything is on the Internet, and it’s easily accessible, which should make it easier for caregivers to get help. But again, they have to, it goes back to: “Who’s reliable? Where do I find it? Who can I trust? Who really knows enough to help me?” And that’s kind of all what it comes down to.

How to Support Family Caregivers

28:00 Jim Masters: That’s right. I want to remind the audience, too, that you’re going to be back next week, Thursday, at the same time 1 PM Eastern as well, and looking forward to that. Because again, the conversations we have are extremely helpful, and your knowledge and wisdom are as well. And we’ve got a, maybe about a minute or so left, that there were some really cool articles that you shared, too, How to Support Family Caregivers with Complex Needs, Invisible Caregivers, Children, and Family Caregiver Needs are Invisible. Those, in my perusing those, are invaluable as well, really terrific stuff and great information in those articles.

28:45 Pamela D Wilson: You know, it’s fascinating for me, I do research every week  because I write my blog, and I have these radio interviews that I do, and so I’m continually trying to find information, come up with sources of new information for caregivers, and ways to share information from what I find that matches my personal experience.

29:03 Jim Masters: And you do a great job, that’s for sure. Absolutely. Our extraordinary guest is Pamela D Wilson, and I encourage you to make contact with her. Again, she’s author of the book, The Caregiving Trap, which is extraordinary as well. You can go to PamelaDWilson.com, that’s PamelaDWilson.com to connect with her. She’s very approachable, she can answer any questions, there’s no obligation, you can just throw out a few questions. She’s very responsive, and then if you want her to, she can map out a whole plan for you, she can work with you directly, and she’s based in beautiful Golden Colorado, where she works with clients all across the country and beyond. So, we recommend you do connect with her at PamelaDWilson.com. She is truly amazing. Pamela, thanks for joining us on the show, it’s always a pleasure to have you with us, and looking forward to chatting again next week.

How to Contact Pamela

30:04 Pamela D Wilson: Thank you so much. And there is a contact button on my website, so questions, suggestions, anything like Jim says, please push that button and send me an e-mail.

30:14 Jim Masters: Absolutely, you’re one of the few people on the planet that allows people to push their buttons. [laughter] You take care, Pamela. Thanks for being with us, and you got to laugh too, right? Levity is important in all aspects of life.

30:29 Pamela D Wilson: We have to laugh in caregiving; otherwise, we will go crazy. [chuckle]

30:33 Jim Masters M: Right. [chuckle]

30:34 Pamela D Wilson: Thank you for that.

30:36 Jim Masters: Absolutely. You have an awesome day, and we’ll chat again real soon, alright?

30:41 Pamela D Wilson: You too, thank you so much. Bye-bye.

30:44 Jim Masters: You got it, take care. Thanks, Pamela. Again, go to PamelaDWilson.com. Jim Masters here for all of us at CUTV News Radio Live, what a phenomenal guest and extraordinary series we have here exclusively. We thank you very much for being with us as well. I will be back in less than 30 minutes for another great episode with another great guest and great topic right here exclusively on CUTV News Radio Live. So, we hope you join us for that. Till then, from all of us here, the entire team, you have a great day, take care, and thanks for listening to CUTV News Radio Live. More coming up, bye for now.

 

About Pamela Wilson

PAMELA D. WILSON, MS, BS/BA, NCG, CSA helps caregivers and aging adults solve caregiving problems and manage caregiving needs through online programs, live support groups, and an extensive caregiving library that includes articles, podcasts, videos, and webinars.