Caregiving Blog: Family Caregivers Providing More Care
This is a transcript from a radio interviw on CUTV News Radio with host Doug Llewelyn and caregiver expert, Pamela D. Wilson, discussing family caregivers who are providing care for aging parents and spouses. The program aired on July 11, 2019. The podcast is on the media page.
00:02 Announcer: Welcome to CUTV News Radio, where our hosts Doug Llewelyn and Jim Masters talk to today’s top thinkers from all around the world to bring you information, inspiration, and thought provoking ideas that you can put to use in your personal or professional life, right now, covering a broad range of topics. We dig deep to discover what makes today’s top thinkers tick. CUTV news radio, it’s the show where ideas matter. And now, here’s today’s host, Doug Llewelyn.
00:35 Doug Llewelyn.: Well, good afternoon, everybody. Nice to have you back with us wherever you are. Our guest, by the way, I should say good morning, because our guest today is out in Colorado where it is technically still morning. Anyway, it’s a delight to be here with you and our guest is… Returning guest, is Pamela D. Wilson. She is an extraordinary guest, one of the favorites that I’ve had the opportunity to talk to on these broadcasts over a number of years. She is so well-informed on a subject that is so critical and that many people really don’t understand and don’t know that they could be affected by this, at some point. She is an expert in caregiving, and you know when you pause to think about it, and we’ve heard from lots of caregivers, it is a tough job.
Adult Children Become Caregivers for Aging Parents
01:22 Doug Llewelyn.: Let’s say your mom gets sick or she falls and has an accident and breaks a leg and is laid up for a while or something even worse, or it could be a terminal illness or something. And you’re in Wyoming and your mom is in Maryland, and you have a sister who’s in Detroit. Who’s going to care for mom or dad? If dad, it could be dad. It could be one of… Somebody’s got to get in there and help her, and often, it comes down to you, the child. And it’s something that most kids are not talked to about.
01:57 Doug Llewelyn.: For aging parents-who likely cared for their own parents-they rarely talk to adult children about being their caregiver. And when the time comes to help an aging parent, adult kids simply are unprepared for the role. They don’t know where to turn, what to do and then once they get there and start caregiving, they realize, “Boy, this is a major challenge.” Well, our guest, she has her own business. It’s called Pamela D. Wilson Inc. She is one of the most knowledgeable people in the country, if not the world, on the subject of caregiving, and she has courses. They’re online, and stories and books and things like that, all designed to help people who are thrust into the role of being a caregiver. She has a great book called, The Caregiving Trap, and that really is what it is. Plus, she does a radio show, and I’ll tell you about that in a little bit. But anyway, Pam is a fabulous guest. I love to have her on, and she’s out of her home in Golden, Colorado where she’s way up in the Rockies. It’s a beautiful day, is that right, Pam? Gorgeous day today?
03:00 Pamela D Wilson: It is a gorgeous day today in Colorado. We are so fortunate to live here.
03:05 Doug Llewelyn.: Well, listen, I’m so glad you’ve taken the time out to talk with us. This is a continuing series we’ve been doing with Pam over these last several weeks. She has a couple more broadcasts. Speaking of broadcast, you do your own radio show, that’s about to go back on the air. Am I right?
03:19 Pamela D Wilson: You are right, and I am so excited. I started the radio program actually a long time ago, 2009, on a local station here in Denver. I took a break to write a book and I’m coming back and it’s one of my favorite things in the world to do because I can talk live to caregivers like we’re talking now, they can call in and ask questions, and I get fabulous guests. And so, I talked about a couple of them, the ones I had. I actually found the son of the man who invented the dialysis machine, so we had a whole interview about that. I was fortunate to get doctors from Mayo Clinic, and just amazing places all over the world to come on my show, and share and talk about caregiving. And so, it’s something that I’m really looking forward to. It starts next Wednesday night, the 17th. Information is on my website about how people can listen live, and then the replays will be on the website as podcasts.
04:12 Doug Llewelyn.: Well, good, alright, let me get the website out… You do have a fabulous website, no question about it. It’s PamelaDWilson.com. Pameladwilson.com. If you go there, you’ll see what I mean about all the information and everything that is available. But let’s talk for a moment about what I just mentioned at the beginning here. Most adult children don’t talk to their parents about the position they might be in if they have to care for their parents. Or maybe it’s the kind of subject you just don’t want to discuss with a parent. Would that be right, why they don’t do it?
Aging Parents Don’t Talk To Their Children About Being a Caregiver
04:45 Pamela D Wilson: I think it’s a kind of subject that none of us want to talk about because in society, we don’t like to talk about negative things. So getting old and having diseases and needing care, and eventually, maybe having to move to a care community. None of us want to talk about that. And I know that aging parents have taken care of their parents, so they know about this. But there’s this sense that they don’t want to talk to their children either because they’re afraid if their children know they’re going to need care, the children may say, “Well, I’m not going to do that.” So I think they just leave it to chance.
And then, like you said, at the beginning, broken hip, broken leg, broken arm, a heart attack, all of a sudden, the kids are swept into caregiving. And an interesting point is, I was doing research last week. There are children who are caring for their parents, who don’t even view themselves as caregivers because again, in society, we don’t use that word, caregiving, or caregiver enough so that people realize that well, if I’m helping mom or dad, I must be their caregiver.
05:49 Doug Llewelyn.: Yeah, and maybe one of the reasons that parents don’t talk to their children about possibly needing their help, as caregivers, is that the parents don’t want to be put in that position to begin with. Don’t want to feel like they’re going to have to depend on one of their children to be a caregiver for them and assume that they’re going to be fine, and they’ll get along without having any major incident in their life. But then it doesn’t work out that way so many times. Well, maybe once.
Aging Parents Don’t Want to Be a Burden
06:18 Pamela D Wilson: Well, it doesn’t, and I believe that to be true. No aging parent wants to feel like they’re a burden to their children or to need help. The hope is that we all remain independent and healthy, and have control over our own lives. But that isn’t the way that it works out. And even to the point where sometimes it’s difficult for the aging parent to admit that my health isn’t what it was two months ago. And maybe my memory, it’s not so good as it was a year ago. So, maybe I do need help and maybe I should start that conversation with my children, to say, “If I need help. Will you show up?”
07:00 Doug Llewelyn.: And the other thing is, as you pointed out that becoming a caregiver for an aging parent or a spouse is a really significant life transition. It’s as significant as moving out of the home. When you finish college and you’re going to go live somewhere else and start your life. Start a job, or becoming a parent, or getting married, and having kids, these are all big, they’re big moments and transitions in one’s life. And becoming a caregiver can be just as traumatic and as big a moment, can’t it?
07:30 Pamela D Wilson: It can be. And the fact that we don’t talk about it, it’s one of those, I could just get on a soapbox and talk for 24 hours straight. [laughter]
Caregiving Is a Life Transition
07:38 Pamela D Wilson: I don’t know why we don’t talk about this. Because it is, it’s as significant as getting married, or having children, or having grandchildren, and yet, we just kind of sweep it under the rug. And then we have all these poor caregivers out there who are so stressed and burned out. And because we don’t talk about it, they don’t know that help exists. Some of them are so isolated in 24/7 care situations, taking care of the spouse, or mom or dad, that there’s this whole world out there that they don’t know. And they don’t even know that there are other caregivers out there like them. So, for them to say, “Maybe I should get some help,” it doesn’t happen. They don’t know that help exists.
08:19 Doug Llewelyn.: Well, that’s where you come into play. I want to point out. I keep mentioning how full of information your website is. Tell me a little bit, and for the benefit of those who haven’t heard you before, what Pamela D Wilson Inc is all about. What do you provide? What do you do?
Being A Caregiver is Unpredictable
08:38 Pamela D Wilson: So, what I do, because I have been in caregiving for more than 20 years, and I always say I’ve seen the best and the worst. My mission really is to prevent caregivers from all the stress and from making unnecessary mistakes. Because it’s impossible to know what’s going to happen. So, my website, and honestly, we add pages every week. There’s a caregiving library on there – 30 different subjects. There are videos. There are podcasts. My two courses Stay-at-Home and Power of Attorney are on there. Now the website page is updated for the radio program. I have a blog. Yesterday, I posted a blog about burnout and compassion fatigue for caregivers. So new information is added every week. I do a newsletter once a month. People can sign up for that. It really is, I hate to say a one-stop shop, but it is. There is so much information on there for caregivers. A lot of it’s free, my courses are obviously paid.
09:35 Doug Llewelyn.: Why are you so interested in this subject then? Why did you get so involved in this, to begin with, since that you’ve been really focusing on caregiving for, 10, 15, 20 years now?
Pamela D. Wilson, Caregiving Expert
09:47 Pamela D Wilson: I, as a child, always loved older adults. I was a the last born, so I was the baby. And my mom would take me around to go see my aunts and uncles, and of course, they doted on me, but I loved them. And from a very young age, I always wanted to find a way to help older people. And then I had all these family losses. So, a sister killed in a car accident, both of my parents lost my brother from friend leukemia.
After that, I decided to make a career change. I was working in corporate America, and I thought, “You know, when I was 17, I wanted to help older people. Now I’m going to do that.” And I love them. All of the people that I have helped over 20 years, it has been such an honor. And just to get to know, I had clients who are 105 years old. The wisdom, the grace, the information that they have to impart, to me, it was like a Mastercard commercial, priceless. It was just priceless and I love it.
Family Caregivers Provide Complex Care
10:44 Doug Llewelyn.: Well, I respect what you do so much. And I know there are not that many places one can go to get all the kinds of information that you’ve compiled into one place, which is on your website. You alerted me to a fact and told me that there was a booklet that came out that had been funded by AARP called Home Alone Revisited. It’s a family caregiver providing complex care guide. So, do you want to talk about that a little bit? Because there’s some very interesting information in there about what they found.
11:15 Pamela D Wilson: I do.
11:16 Doug Llewelyn.: Okay, go ahead. Tell me a little bit.
11:17 Pamela D Wilson: So, what they found, in short, is that family caregivers today, as the needs of loved ones progress, are really almost providing nursing home and hospital care in the home. So they’re doing medical tasks that years ago were done only in a hospital or only in a nursing home. And I saw this when I was a professional caregiver. So I learned all kinds of things, like how to take blood sugar readings, blood pressure readings, run an INR machine, which is a test for a Coumadin that people need when they’re on blood thinners. I cleaned oxygen machines, I took pulse oxygen readings, I changed catheter bags, used Hoyer lifts, used Pivot lifts.
These are all of the things that family caregivers are doing today that results in a great deal of stress, but also a great deal of fear that they are going to make a mistake to harm a loved one. Because there’s no training for how to do all this. The medical community just expects caregivers to somehow magically pick it up and know how to do all this.
Help for Caregivers
12:26 Doug Llewelyn.: So, where do you get that kind of training that you need? And some of it is, yeah, people would be very nervous about a lot of these issues that they have to deal with. I mean, changing diapers on an adult, [chuckle] how does one learn how to do that?
12:44 Pamela D Wilson: There is a first time for everything-is what I say. There are so many firsts in caregiving, like the first time you give a bath, the first time you change a Depends, the first time you have to learn how to use a blood pressure machine. And it really is reliant on the caregivers to go out and seek how to do this. So, for example, you might be able to have a pharmacist show you how to use a blood sugar monitor. You have to be creative in finding ways to do this.
And I know there’s YouTube videos on just about everything, but sometimes those don’t always work. It’s mostly seeking out someone, a pharmacist. If somebody’s leaving the hospital, try to get a nurse at the hospital to show you how to do this. Some of the equipment companies have 800 numbers, and they can call and walk you through it. And I can help people do this in my Stay-at-Home course too. I’m not a doctor, I don’t profess to be one, but I’ve used these machines and I can explain how to use them. But the caregivers have to find a way to learn, because trial and error is not a good thing.
Caregiving Mistakes Happen
13:48 Pamela D Wilson: I had a caregiver years ago, who I would call the house to find out how my client was doing. And one day the client was not doing so well. I asked the caregiver, take the blood pressure, tell me what the reading is. The caregiver, I didn’t realize, was dyslexic, so she transposed the numbers, and when I first heard the numbers which was like a 60 over 190, I thought he had a heart attack. And I said, “You know could you do that again and then tell me what the number is. And make sure that you’re reading me is a top number first and the bottom number second.” It’s so easy as a family caregiver to look at a number on the machine, and think someone’s having a heart attack, or someone’s not doing well, because you don’t know exactly what you’re looking at.
14:34 Doug Llewelyn.: Wow, it’s something else. I was just sitting here thinking for a moment. I’m sure you’ve heard stories, but talk a little bit about how disruptive to a family’s life being forced to become a caregiver for a parent can be. There are going to be a zillion examples.
The Caregiving Roller Coaster Ride
14:53 Pamela D Wilson: Well, I call it a roller coaster ride. It just tosses everything upside down. And mainly, there is one person. So, I’ve had families where there have been multiple children, but it always seems to be one that steps up that takes most of the responsibility because the other children are saying, “Well, we don’t have time.” Or, “We don’t want to see mom or dad decline so we’re just not going to visit.” So that one person, it takes over their life. So let’s say, they’re married and they have children all of a sudden, and now they have mom or dad to take care of. The dinners they used to cook during the week, doesn’t happen anymore. Dad’s going to pick up something at the grocery store. Outings with the kids, dad’s doing it all, because mom is with mom or dad. It can take over a life.
15:38 Pamela D Wilson: I had a client who was a neurosurgeon at a hospital here in town. Her father would call her 10 times a day sometimes, when she was in surgery, and this is crazy to me. But she would answer the phone in surgeries. [chuckle] And I just said, “What are you doing? What happens if somebody that you’re operating on is having a severe condition, and it’s your dad calling on the phone? You put that phone away, and you tell dad to call you between 4:00 and 6:00 PM.” Caregiving can just take over a life.
Long Distance Caregiving
16:11 Doug Llewelyn.: And that’s a point where I assume they’re in the same city or the same town. But suppose as I pointed out in the beginning, suppose you’re in Wyoming and your mom is in Maryland. And there’s nobody there to help her. It becomes one of you. Maybe you, the daughter or the son, has to go to Maryland to work with mom, help straighten out the situation. It really gets very complex, doesn’t it?
16:37 Pamela D Wilson: It does. It’s the whole planes, trains, and automobiles. It’s like, “Who’s going to see mom this month?” And so, when you show up, of course, before our mom says, “Oh everything is fine honey.” You show up at the house and you are like, “Oh my gosh, everything is not fine.” And you have a million things to do. And the whole time you’re there for, let’s say, a week or two weeks, all you’re doing is running around. You’re picking up groceries. You’re setting up doctor appointments. You’re organizing medications, and so this vacation that you think you’re going to have turns out to be a work project that then you have to manage remotely.
Technology for Long Distance Caregiving
And interestingly enough, there is all this technology out there today that can help with medication machines. And even this is going to sound a little big brother-ish but remote video cameras so that you can check in on your parents. If they will allow it. Any time of day, just so you know that they got up out of bed this morning, so you can be across country and monitor care with the technology that’s out there today.
17:37 Doug Llewelyn.: That what you’re pointing out works really, really well. I work on a television series and one of the camera guys, television series, checks his phone about every 45 minutes or so, because he’s in New York, and his mom is in Florida, and he can see what his mom is doing in the house. It can switch to cameras all over the house and make sure she’s okay.
18:01 Pamela D Wilson: It’s pretty amazing. And if parents don’t mind that, it’s a great thing.
The Caregivig Trap
18:08 Doug Llewelyn: It is, it’s just amazing. I’m also thinking about… Maybe we ought to talk a little bit about… And you’ve heard the stories about how bad it can be for someone who is a caregiver and what it can do to their life. You’ve written the book on it, The Caregiving Trap, which is really good. By the way, let me mention your website because that’s where all the information is. It’s PamelaDWilson.com, PamelaDWilson.com. Tell me about the trap idea and why you named it the trap because, obviously, it can become a trap. Really.
18:41 Pamela D Wilson: Well, it can. And the name actually came from my clients, and my care givers. I would go see my older clients and they would say, “Oh Pamela, I am so trapped in this house, I can’t drive anymore, I don’t get out. Look at these medications, I have 20 bottles of things I have to take every day, just so that I wake up tomorrow.” And they said, “This being old, this retirement, golden retirement, it’s a trap.”
And my caregivers would say, “Oh I have to go over Mom and Dad’s tonight and tomorrow night and this weekend, and I really wanted to go out with my friends, but it’s mom and dad time. So I feel trapped in this caregiving role that I have to do all these things that I’m willingly doing but I certainly would rather be doing something else.”
19:30 Doug Llewelyn.: Well, I can only tell you the book really, it’s like a guide and it’s one of the few Bibles out there on this whole subject of caregiving and what you should expect. You talk about your online course, your stay-at-home online course. Explain how that works, what does the course provide and what do you learn from it?
19:55 Pamela D Wilson: So the course. The goal of the course really is to help caregivers keep aging adults at home. So parents, spouses, but it’s also to educate the aging adults on what they can do because nobody wants to go to a nursing home. There’s a huge fear in society about what nursing homes are, the care and neglect that can happen there. And so the course is, it’s online, it’s in two formats. So it’s recorded webinars and then live webinars.
And the goal is, when we first start, is what is your caregiving situation like? What stresses you out? What are the problems? How would you really like it to be so that we can figure out throughout the course, how to get from A through Z? Because most of us in life, you know, we’ll have a problem and we keep trying the same thing and it doesn’t get better. Sometimes we need a mentor, sometimes we need a coach to say, “Well, why don’t we think about it differently?” And that, even myself sometimes. I have to stop myself.
Caregiver Burnout and Exhaustion
20:55 Pamela D Wilson: I was reading a book the other day and the author was explaining something and my first thought was, “Well, that’s going to work for you but it’s not going to work for me.” That is a common trap that caregivers fall into when they get burned out and exhausted. They just want to shut the world out rather than getting into a support group or taking the course that really can change the whole aspect of caregiving, help parents avoid nursing homes, help the caregiver become more skilled in managing care.
Like I talked about, how do you take blood pressure? What if you have to use a lift? You’ve never bathed somebody before. How do you do all of these daily things to make caregiving easier so that you’re not having a meltdown and feeling overstressed and your mood is up and down every day? The goal is to help caregivers manage care and make it a lot easier. And I share a lot of things that people would never think of that affect the ability to stay at home only because I’ve learned this in 20 years in helping thousands of clients.
22:00 Doug Llewelyn.: You also talk about one of the things as caregivers get thrust into the issue of managing pain and responding to behaviors to a number of other challenges that are rather common. You’ve had clients that were in a great deal of pain themselves because of arthritis or other health issues while they’re trying to care for an aging parent or whomever. And that can be a real challenge for them because they’ve got health issues of their own. And that’s tough.
22:30 Pamela D Wilson: Well, it is. And caregivers don’t realize that many times their health declines more than the health of a loved one. So caregivers experience emotional stress, physical stress, they end up with high blood pressure. When you’re in that situation and you’re caring for a parent who has arthritis or maybe they are on pain medications and mom or dad is saying, “Well, honey, it’s 10 o’clock. Give me my pill.” And you’re thinking, “Well, I just gave you one at nine. I can’t give you one until noon.” And your parents are screaming at you saying, “I’m in pain, I need the medication.” And you’re like, that child thinking, “Oh my gosh, what am I going to do? The doctor told me I can’t give another pill for three hours.” The pressures on caregivers of having to manage these types of situations is extreme and it’s why many caregivers – they fall apart. They burn out, they shut down, which then compromises the care of the parent.
Alzheimer’s and Dementia
23:28 Pamela D Wilson: And then there’s the other behavioral issues. So if you’re caring for someone with Alzheimer’s, they may have been this sweet person throughout their life but because the brain has a disease, they’re issuing expletives and cussing and yelling and screaming. And you, the poor caregiver with no training, you have no idea what to do. You’re just standing there like a deer in the headlights while mom instead is screaming and yelling at you and you just want to go hide in the bathroom and have a big cry.
23:57 Doug Llewelyn.: No kidding. And you’ve never seen your parent do that? It’s a whole different thought.
24:02 Pamela D Wilson: Yes it is.
24:02 Doug Llewelyn.: How do you handle that? What do you suggest? Because that sounds like an all too real situation.
24:10 Pamela D Wilson: It’s a very real situation. You… It’s a process of redirecting. So many times when someone with Alzheimer’s or dementia is upset, there’s something in the environment that’s upsetting them. And I’ll use an example. We had a lady who used to love to go shopping and she got dementia and the caregiver took her to a store. And it was so overwhelming. All the people, all the noise of the store that the client just about ran away.
So there’s these environmental situations that upset older adults with dementia. Sometimes it’s because they’re in pain and they can’t explain that they’re in pain. So let’s say, mom or dad starts to throw things around and just kicking pots and pans out of the kitchen and everything. It could be because they’re in pain and they don’t know how to tell you that they’re in pain. So many times, it’s calming and redirecting. So you might take mom or dad’s arm and say, “You know, let’s go sit on the couch and let’s listen to music and let’s see if we can figure out what’s going on.”
25:10 Pamela D Wilson: The biggest thing is you can’t react to their reaction so it’s simple. If somebody yells at you, you don’t want to yell back. And especially with Alzheimer’s or dementia because they have what I call a horse sense. They can read if you are upset as a caregiver or if you’re agitated and they are going to mimic what you’re doing. So finding a way to be calm and changing the situation or taking mom or dad outside, kind of just redirecting the scenery for a moment can calm things down. But that is something that caregivers have to learn. It just doesn’t come by second nature.
25:48 Doug Llewelyn.: That’s really good advice. I’ll bet you get a lot of feedback from the people who look at your website, who read your books, who get in touch with you because they’re experiencing certain things that they want more advice from you for. What kind of feedback do you get from, and I’m sure you learn new things all the time about what’s going on in this field of caregiving. Talk a little bit about that.
26:12 Pamela D Wilson: I learn something new – I learn something new every day. And so today, a caregiver, commented on something and she was a CNA and she said, “Oh my gosh, I love my job, but I can’t do this anymore. The facilities expect us to bathe nine people in one day and we’re short staffed and there’s not enough help.” My response to her was, “I totally understand where you’re coming from but you as that employee and other employees have to start speaking up about this. If you say nothing and you walk away and you’re a caregiver who really cares, look at what those adults need care in that community, first of all, are losing.” And then, of course, I redirected her to my website, I have a library, there is… It’s divided. So, it’s family caregivers and professional caregivers. So, nurses, doctor, CNAs, I do special articles just for them and I have special videos just for them.
Help for Caregivers
27:07 Pamela D Wilson: And so I said to her, “Look at this, join my library look at these videos, share these with other employees who are working with you and then go to management and say We need more support.” Because to me, if we lose the caregivers out there who are CNAS and working in care communities because of stress, we’re losing the people who really care, because as most of us know, there are a lot of people in caregiving, who shouldn’t be in caregiving. They don’t care about people they’re burned out, they really need to go get other jobs, so we need to help the professionals who really care, to stay there and to give them more skills, and more support and help them not to get so burned out.
27:52 Doug Llewelyn.: Well, that’s such great advice. And also, I presume you have a lot of advice on how to help the caregiver that is, let’s say it’s the child or the son, or whoever, try and prevent burnout from their point of view too, because it’s very likely to happen when they’re thrust into this role isn’t it?
Caregivers Don’t Know Where to Find Help
28:11 Pamela D Wilson: It does happen, and it’s a shame. Partially it happens because they don’t know that support is out there. So the caregivers that find support are so relieved that, “Oh my gosh, there are other people out there in a similar situation. And here I have someone who can tell me what to do if I don’t know what to do, how to try different things that work,” because not everything works for every situation. Sometimes we have to problem-solve and keep going until we find the right thing.
28:39 Doug Llewelyn.: Great advice. Well, Pam, we’ve gone through the half-hour, just like that. Pam is going to be back with us again next week at the same time, all through July and then on August 1st as well, Thursday at 1 PM So, come back again next week and hear more from Pam on our amazing broadcast series with Pamela D. Wilson. Again, her website is PamelaDWilson.com. Pam thanks for being with us. I love chatting with you, and we welcome you and look forward to your coming back next week. Okay.
29:08 Pamela D Wilson: My pleasure, thank you so much.
29:11 Doug Llewelyn.: You’re very welcome, thank you, Pam. And I hope you enjoyed this everybody. A lot of very, very important information you’ve just been witnessing. Well its not witnessing, at least we heard it, yeah, great news indeed. Alright, that’s it for us today. Have a great day everybody, bye for now.