Why Being A Caregiver Is So Exhausting
The Caring Generation® – Episode 10 September 25, 2019, On this radio program Pamela D. Wilson, caregiving expert, talks about caregiver burnout and Why Being A Caregiver Is So Exhausting and interviews special guest Rita B. Choula director of caregiving projects for the AARP Public Policy Institute about the Home Alone caregiver study.
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Why Is Being A Caregiver Exhausting Radio Show Transcript
00:06 Announcer: Caregiving can sometimes feel like an impossible struggle. Caregivers may be torn between taking care of loved ones and trying to maintain balance in life. The good news is that it doesn’t have to be that way. The Caring Generation, with host Pamela D. Wilson, is here to focus on the conversation of caring. You’re not alone. In fact, you’re in exactly the right place to share stories and learn tips and resources to help you and your loved ones. So now, please welcome the host of The Caring Generation, Pamela D. Wilson.
00:48 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, and your host. You’re listening to The Caring Generation radio program coming to you live from the BBM Global Network channel 100 on TuneIn radio. The Caring Generation focuses on the conversation of caring, giving us permission to talk and laugh. Remember, we must laugh about aging, the challenges of caregiving, health, well-being, work-life-family balance, everything we’re trying to do, and everything in between. You’re not alone. Please invite your family, your friends, your co-workers, and others to join us each week on The Caring Generation because being a caregiver, needing care, or losing your memory can turn our world upside down. Helpful information and solutions about health, well-being, and caregiving are on my website at PamelaDWilson.com along with my caregiving library, my online support groups, and my online courses, Stay at Home, and Power of Attorney.
01:50 Pamela D. Wilson: This week, we’ll be talking about caregiver burnout and why caregiving is so very exhausting. Many caregivers experience burnout without even realizing that they are burned out. Which places the care of an aging parent, a spouse, or a loved one at risk. Unintentional neglect, verbal or physical abuse happens when a caregiver gets into that mental mode of, “Oh, I just have to make it through the day,” and caregivers put on blinders. They ignore everything else on the outside. So many caregivers have told me that they did their best, but after the fact when they were no longer a caregiver anymore, they had 20-20 hindsight. They looked back at the care situation and saw things that they could have done better. I’ll share signs of caregiver burnout and exhaustion and some basic solutions.
02:45 Pamela D. Wilson: In the second segment of the show, we’re going to talk more about the foundation of burnout and why burnout happens. Some of the reasons are issues that caregivers don’t even realize as causing the problems. What can we do about these deeper issues so that caregivers feel less exhausted, less burned out, and more in control? In the second segment of this hour, we’ll also visit with special guest, Rita Choula of the AARP Public Policy Institute. She is the Director of Caregiving Projects and manages internal and external family caregiving initiatives. We’ll be talking about an update to a study called the Home Alone study. It was originally published in 2012 about how families, neighbors, and friends manage caregiving tasks, and it’s an update on talking about medical, nursing tasks, medications, changing dressings, handling medical equipment, incontinence, pain, special diets. All these tasks that were previously done before by medical professionals are being done by caregivers. It’s no wonder that caregivers are burned out and exhausted.
04:00 Pamela D. Wilson: So, let’s talk about some signs that indicate that caregivers are burned out or are on their way. How many of you listening today feel anxious or depressed? Feeling anxious and worrying; they go together. Because caregiving involves so much of the unexpected. As caregivers, we don’t know what’s going to happen tomorrow, next week, or next month. How many of you have panic attacks, or you’re hypervigilant as part of the worry? Especially if you feel like you have no control over what’s happening on a day-to-day basis? Hypervigilant that is a big word. What it means is being alert and sensitive to your surroundings and outside concerns. Symptoms of hypervigilance could be a fast heartbeat, constant worry. For example, maybe you are a spouse or caregiver for somebody with Alzheimer’s or dementia, and you don’t sleep that well at night because you’re worried about your husband or wife waking up in the middle of the night, walking around. Maybe doing something like turning on a faucet that causes a flood in the house, or maybe you’re worried about them wandering out the front door of the house, down the street, and away.
05:11 Pamela D. Wilson: When I was legally responsible for the care of hundreds of clients, I, like you, was interrupted at all hours of the day. There were times when I would dream that my phone was ringing, and I laugh because it happened a lot. Because many times, I did receive phone calls in the middle of the night. It was usually about injuries or emergency situations with clients. Other signs of caregiving burnout, and let’s group these into the subject of being exhausted. How many of you rarely get a full night of restful sleep? How many of you go to sleep and don’t wake up until the next morning? I doubt not many of you. That lack of sleep results in low energy. You’re tired all the time. That turns into health issues. So many caregivers in that situation say to me, “Well, Pamela, I’m never sick,” and I have to laugh because remember, we laugh about these things to maintain our sanity. The caregiver will say, “Well, I’m never sick.” And I’m saying, “Well, you are now because of all the stress related to being a caregiver. What are you going to do about that? What do you think happens next?” We’re stressed. We’re burned out. We’re exhausted. We lose patience. We overreact.
06:22 Pamela D. Wilson: Caregivers overreact over small issues because we’re so impatient. We’re so irritable. We can’t concentrate. We have difficulty finishing projects at work. Caregivers love to multitask. But what caregivers don’t realize is that that can be very inefficient. It’s the reason that an entire day will go by, and we as the caregiver feel like we didn’t accomplish anything. How many of you had that happen to you today? The day went by, and you’re thinking, “Oh, my gosh. What did I get done? Nothing!” Feeling like we accomplish nothing leads to feeling hopeless, helpless. Sometimes we become resentful. And these are all aspects of being in distress.
07:10 Pamela D. Wilson: Caregivers become resentful. They resent the fact that they’re a caregiver. Especially if you’re a caregiver who really felt like you had no choice but to become a caregiver because there was nobody else. All of that exhaustion, the burnout, it leads to self-neglect on the part of the caregiver. You give up things you enjoy: Hobbies, friends, social activities, and then you forget to take care of your health. So, what happens? The caregiver becomes sicker than the person for whom they care. Then what? All of that sickness and self-neglect, it passes on to the poor care of an aging parent or a spouse. You might think that you’re doing a good job, but you are way too exhausted and depressed to even see that you’re not. Because if you did see it, then you probably would feel more hopeless, helpless, and filled with despair.
08:04 Pamela D. Wilson: Caregiver burnout and exhaustion is really an extreme. It’s not a pretty picture. It’s not good for the caregiver, and it really is not good for your aging parent, your spouse, or the other person whom you are caring for. We’ll talk more about the underlying causes of caregiver burnout and exhaustion. In the second half of this hour, we’ll talk about solutions to help you feel more positive, more confident, more in control of your caregiving situation. And in the next segment, we’re going to talk to Rita Choula of the AARP Public Policy Institute. She’s the Director of Caregiving Projects, and they have the great report out called the Home Alone study, which is talking about the fact that men and women caregivers today are doing tasks that were previously done only by nursing staff. If you wonder why that’s happening, part of it is because healthcare is so stretched. They’re out of time. They’re not doing training, and so more of these issues are being pressed on to the family members and the caregivers.
09:12 Pamela D. Wilson: You’re listening to The Caring Generation live on the BBM Global Network channel 100 and TuneIn radio. For a weekly reminder about the show, you can visit my Facebook page, PamelaDWilson.page. If you visit the Events section, you will see information about the radio show every week coming up. If you sign up there, believe it or not, Facebook will send you an event reminder. So many people say, “Well, Pamela, I forgot to listen. What can I do?” Go to my Facebook page, PamelaDWilson.page, sign up for the event. Facebook will send you a reminder. Technology can be so helpful keeping us on track and reminding us where we’re supposed to be. Stay with me. We’ll be right back with Rita Choula of AARP.
11:16 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation coming to you live from the BBM Global Network on channel 100 and TuneIn radio. We are back with Rita Choula of the AARP Public Policy Institute. Rita, welcome, thank you for joining us.
11:34 Rita Choula: Thank you for having me.
11:36 Pamela D. Wilson: I’ve been kind of giving listeners an introduction to what we’re going to talk about with the study. And so, caregivers are taking on all these complex medical and nursing tasks. What is resulting in that shift from hospitals and nursing homes doing that to now caregivers being responsible?
11:55 Rita Choula: Well, we’re increasingly seeing, particularly in a hospital setting, where patients are getting released from the hospital sooner. You’ve heard the term, I’m sure, “sicker and quicker.” And unfortunately, as payment models change and the stays in hospitals are not as long, patients are sent home, and families are the ones that are having to provide that medical care in the home environment where it was once at least initially started in a hospital or a provider setting.
12:33 Pamela D. Wilson: And so, what are the implications for caregivers? Is it likely, then, that most caregivers at some point are going to be involved in doing these types of tasks?
12:44 Rita Choula: Well, when we look at the wide range of medical/nursing tasks, ranging anywhere from providing really heavy-duty managing multiple medications to helping someone get out of bed to a chair, wound care, and many other things, the likelihood that someone, a caregiver, a family member, will be doing those is very likely. Some caregivers are doing many of those tasks at one time for long durations of time where sometimes it may be something that is much more shorter. Somebody got released from the hospital after having some sort of joint replacement, and they need that assistance doing these tasks, moving from bed to chair but only for a limited amount of time. But it is a really increased thing that we’re looking at now and recognizing that family caregiving includes more than transporting a loved one to the doctor’s office, or going shopping, and includes this really heavy-duty work as well.
14:00 Pamela D. Wilson: Well, and I was reading this study, it also mentioned the cognitive issues, behavioral health issues, addiction issues, in the scope of the caregiving. How many caregivers are caring for families with those particular concerns?
14:14 Rita Choula: Well, the more we look into what families are doing and who those family members are, the more we learned how diverse family caregivers really are. And when we look specifically, particularly at behavioral health, we see an increase in the number of millennials and younger adults, so anywhere from 18-40, who are taking on taking care of somebody with behavioral health conditions. In addition to behavioral health, we’re looking at cognitive, and as you said, addiction issues, which can range from hospital or behavioral health stays in various facilities to once that person comes home, helping to manage with medications. And those family members that are doing it, whether they’re younger or older, are really struggling with how to best care for individuals with those really challenging conditions.
15:13 Pamela D. Wilson: Well, and that has got to be so stressful. I’ve been in the industry for 20 years, and even for me as a professional, sometimes I struggled with my clients that had behavioral health issues or addiction issues. It’s a challenge.
15:27 Rita Choula: It’s a big challenge, yes.
15:28 Pamela D. Wilson: So, we got those issues, and then we’ve got all the other challenges you mentioned, like medications and catheters and things like that. So, of all those tasks that the caregivers do, are there some that are done more frequently, like maybe these are the top five things that caregivers are doing?
15:47 Rita Choula: Sure. And we did, we were able to, in a study, really look at the percentages of caregivers doing these various things. And if we talk about the top five, we would say managing multiple medications; definitely mobility, so really helping people transfer from one place to the other; wound care. One thing that really jumped out to us in this study is managing special diet. Often, we forget that family caregivers are taking care of someone who may now have a health condition and they can’t eat the type of food that they really liked in the past because it’ll be detrimental to their health. But food, as we know, can be very emotional. So, for the family caregiver to have to suddenly figure out how to, not only from a emotional standpoint but also tactically really be able to now cook this entirely new type of meal, is very stressful for them.
16:51 Rita Choula: Another point, another task that really came up that family caregivers are doing increasingly is managing incontinence, and it’s something that people don’t like to talk about because it can be embarrassing. But not talking about it and not getting guidance from providers — who admittedly are not really talking about this issue — can provide stress to that family caregiver as they look to choose the right product and understand why someone has incontinence and what they can do to help them. So, in addition to some of the tasks that we might always think about, the two around managing incontinence and managing special diets really jumped out in this new study.
17:36 Pamela D. Wilson: Well, and I’m so glad that you’re bringing this up because these are the kind of things that caregivers — I don’t want to scare them and say, “Oh, my gosh, this is going be your future,” but we have to be able to talk about these in the general public so that people aren’t embarrassed and they know that this is something that they may have to do. So, one other question, is it mostly aging parents people are caring for, or spouses, or who’s getting the care?
18:01 Rita Choula: Well, it’s a really wide range, and as I mentioned a little bit earlier, we’re seeing that more and more family caregivers are millennials. In fact, one in four family caregivers are millennial. And we’re seeing that they’re caring for their parents who, while they may be aging, they’re not aging in the sense that we think about, if we’re thinking of someone 50 and older taking care of somebody in their 70s. So, you’re having young people in college, just starting out in careers, really taking on some of these heavy-duty tasks and really struggling with it because they’re not getting the attention of providers. They’re not receiving the information in a way that they best receive information that they’re used to through technology, et cetera. So, in addition to what we typically think of, we really recognize that caregiving is becoming more and more diverse.
19:02 Pamela D. Wilson: Well, and thank you. We’re going take a break here. We’re going continue our conversation with Rita Choula of the AARP Public Policy Institute coming up after this break. Stay with me, we’ll be right back.
21:33 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host, you’re listening to The Caring Generation radio program for caregivers and aging adults coming to you live from the BBM Global Network channel 100 and TuneIn radio. Let’s continue our conversation with Rita Choula on the subject of caregivers doing more and more and more. Rita, so you mentioned all these complex tasks, the incontinence, the diets, we’ve got tube feeding, ventilators. How do caregivers get the information and the training to complete these tasks?
22:08 Rita Choula: So, what we are striving to see data on these really technical tasks such as tube feeding, suctioning, ventilators. Our study, which was funded by the John A. Hartford Foundation, really shows that on these very tough tasks, that there is some teaching that is done by professionals. But what we’re also seeing is that often, that teaching is being done in a hospital setting or is done once or twice and in such a way where that family caregiver may not be retaining it. So, the concern often comes with not just getting the instruction, but the ability for that person to retain it and having a place to go if that instruction. They forget that instruction. What happens if, at 2:00 in the morning, the tube becomes clogged, “What do I do, where do I go? I can’t remember what they told me to do.” And so, we’re starting to see things, and actually, AARP through our Home Alone Alliance, has developed a series of videos on multiple topics and just this way that caregivers can access to continue to learn more about what to do in these instances.
23:23 Pamela D. Wilson: That is wonderful because I can imagine putting myself in that situation, I’d be the one having a panic attack at 2:00 a.m.
23:29 Rita Choula: Yes. [chuckle] Yes.
23:32 Pamela D. Wilson: It all seems like it’s so much responsibility for these caregivers. In the study, what concerns did the caregivers mention about having to do all these things?
23:40 Rita Choula: They are very scared. They feel very stressful. They feel they’re stressed, and part of that stress comes from having to be on all the time and making sure that they’re doing these things in the right way. A number of these family caregivers are working. So, not only are you going to your job every day, but you’re coming home and having to do these very heavy-duty tasks. So just the sheer stress and emotional strain that comes with this is in the top ten things that family caregivers are saying really are the hardest parts. It’s not that they always don’t want to do these things; they’re family caregivers and they believe in caring for their family members, but where the stress comes in is not knowing what to do or being tasked with so many of these difficult things at one time.
24:39 Pamela D. Wilson: Well, and I was talking to somebody in Texas today who is, I want to say three hours away from doctors and hospitals. Some of these caregivers are so isolated. Either because there’s no family to help, or maybe they live in an area like this. So how does that being isolated add to the stress that caregivers experience?
25:00 Rita Choula: And for the first time in the study, we really did take a look at that notion of social isolation, and we’re seeing that family caregivers are increasingly lonely, they’re depressed. And social isolation can also lead to poor help for that family caregiver who’s giving their all to taking care of this person within their home, or who does it far from them, or long distance, and that they’re not taking care of themselves. And we especially are seeing this in multi-cultural family caregivers, that despite the stereotype, African-American family caregivers and Latino family caregivers tend to be extremely socially isolated. Which, as this came out in this study, gives us another area to dig a little bit deeper into and not only find out why this is happening, but what are some of the solutions to better provide support to these individuals and wrap them with that support so that they are not isolated.
26:00 Pamela D. Wilson: Well, and talking about support, AARP has been an advocate of what’s called The Care Act in over 40 states. Can you explain what that is and how that supports caregiver training?
26:11 Rita Choula: Sure. We are up to 43 states now, and this act and this legislation across the country was founded on the 2012 Home Alone study where we really found that family caregivers were not receiving the instruction around these very complex care tasks. The three major pieces of the act are one, if someone who is in the hospital, that that patient has the opportunity to identify a family caregiver and that family caregiver’s name goes into the record, the electronic health records. Also, that the family caregiver is notified in as much advance notice of discharge. So often, we hear family caregivers saying, “I got four hours’ notice.” “I got six hours’ notice.” “I was just at the hospital, and I went to work, and they called me and told me to come back. My family member was being discharged.” And finally, this idea that family caregivers need to be trained. So, within the Care Act, hospitals really need to say, “Look, these family caregivers need to be trained, and we need to provide them this instruction on these tasks, on these various tasks.” It can be from the very complex to those that may seem easy, but to a family caregiver in crises may not be. We can no longer assume that family members have to take on these very difficult and complex tasks without very needed support from the provider community.
27:42 Pamela D. Wilson: And so, let’s say that I’m one of these family caregivers and they teach me how to do suctioning, and I leave the hospital, my parent leaves the hospital, and I’m stuck, what do I do, and I forgot everything they showed me. What do I do? [chuckle]
27:55 Rita Choula: Well, hopefully, the family members, and we’re seeing this increasingly in our work, we are funded by the John A. Hartford Foundation and The Ralph C. Wilson Foundation to go across the country to visit hospitals, to look into just these types of practices. And we are learning that increasingly, we see, and I would say a promising practice within hospitals, is that there’s a phone number. That they’re recognizing that these family members can’t learn necessarily on the spot and that they will run in to hiccups once they get home, and they’re able to reach out and go back to that hospital in order to get the support they need, either by the phone or someone coming out to them.
28:36 Pamela D. Wilson: That is fabulous because I think that is so badly needed because I imagine myself being in that situation. Having no idea what to do. Rita, thank you so much for joining us, it was an awesome interview. I so appreciate your time tonight. Coming up after this break, we’re going to talk more about caregiver burnout and exhaustion. What you can do to relieve feeling burned out and exhausted and why burnout happens. Stay with me. We’ll be right back after this break.
31:28 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host, you’re listening to The Caring Generation radio program for caregivers and aging adults coming to you live from the BBM Global Network channel 100 and TuneIn radio. The Caring Generation is the place where we share tips and things you should know about life and caregiving, even those difficult things that you may not want to know. I would rather have you be prepared than surprised. Help, hope, and support for caregivers are available on my website at PamelaDWilson.com. Please share information about The Caring Generation and my website with everyone you know. As we talked with Rita, one in four people are caregivers, it’s over 40 million people, they’re looking for hope and help.
32:13 Pamela D. Wilson: So, let me go back to talking about caregiving burnout. If you are feeling burned out, exhausted, out of control, there’s a lot of little things that we can do as caregivers to start taking back our lives one day at a time. We’ll also talk about the reasons that burnout happens and what you can do about that. So, many caregivers who feel stressed and burned out often ask the question, “Why me?” How many of us ask that question in our lives, not even related to being a caregiver, “Why me?” Whatever our situation in life, we are better acknowledging and accepting the situation. It doesn’t mean that we like the situation. It only means that we realize that this is where we are today, this is where life is.
33:00 Pamela D. Wilson: So, if at all possible, think of something positive about the caregiving situation that you have. For example, most of our parents took care of us when we were young; we’re now returning the favor by taking care of them. We do it out of love. We do it out of responsibility. And then the next thing that you want to think of is, what can you control? So many caregivers focus on all these things that we can’t control and things that are going wrong, but what can you control? Of course, we all want things to go our way, but having things go our way all the time, not reality, that would be a dream. So, think about things that you have given up, and if you’re feeling resentful, what can you bring back into your life? So, if you’ve given up friends and social activities, could you go see a friend one day a week for even an hour? If you feel that your life is unbalanced, that you’re constantly disturbed by all these caregiving events, problems, and emergencies, where can you add a little bit of stability back into your life that gives you joy? I know you’re thinking, “Oh, my gosh, I’m too tired to add anything else. I don’t even possibly have time.” But that thinking is what resulted in you becoming burned out and exhausted in the first place. We’ll talk about ways to change our thinking later in this hour, but try to think of one or two things.
34:23 Pamela D. Wilson: So maybe it’s as simple as listening to two songs that you like. Going outdoors for a walk, maybe going to church, exercising, whatever these two things are, find a way to start scheduling them back into your life and keep that schedule. Because that schedule is part of learning to set boundaries and take care of you as the caregiver. Remember, you’re as important as the person for whom you’re taking care. Your physical, emotional, mental health are important. Burnout makes us feel like we’re isolated and alone, and you’re not. You’re here, which means that you want to improve your situation. On that note of not being alone, find a support group, join a support group, there’s local groups where you live, or easier, there are support groups online, on my website PamelaDWilson.com. I have two groups on Facebook, on my page, PamelaDWilson.page. The first one is for family caregivers, it’s called The Caregiving Trap, and the second one is for people who work in the caregiving profession, so, CNAs, nurses, health providers, financial people, legal people, anybody who helps older adults. That group is called The Caregiving Collaborative. And all of the research really does show that support groups, whether you go in person or online, give you a place to go.
35:45 Pamela D. Wilson: I had a caregiver say that last night. When you’re feeling burned out, exhausted, or stressed, you can just check-in online and see what people are talking about. Because being with other people who understand what you as a caregiver are going through, it really is a blessing. You might make a new friend. Think of that. Many caregivers give up all of their friends when they become a caregiver. What a blessing would it be to make a new friend with somebody in a caregiving support group who understands what you’re going through. Support groups also help caregivers feel less alone, especially if you live in a rural area where you can’t get to any groups. They help caregivers regain self-esteem and confidence. And the lack of confidence and self-esteem is partly the reason that caregivers feel like caregiving is so out of control and they become so burned out.
36:39 Pamela D. Wilson: So, let’s talk about control for a minute. Caregivers feel that situations are out of control, but they also do the opposite: They try to control. How do they do that? Well, it’s like we want our life to be orderly. We have a way that we think that things should be, don’t we all? [chuckle] We’d like it to be no surprises, no unexpected situations. But that’s not reality. The problem here is that caregivers don’t like to ask for help, and that’s another area where we have to change the way that we think. If you ask for help, you are in sense giving up control of, let’s say that somebody comes to the house for four hours to stay with your parent. You’re giving up control for four hours to go take a break, and when you get home, the house may not be as organized as you would have kept it, or things may have not happened as you liked, but think of the positive. You got a four-hour break to help you physically, to help you mentally, to refresh.
37:42 Pamela D. Wilson: So, as caregivers, sometimes we have to give up a little bit of control to regain some control in our life. And I know so many caregivers think that there’s nobody to help, it’s never going happen. If that’s the way you think, you’re not going to get any help. I truly believe that our thoughts affect what we get in our life. If you think and start to believe that help is coming and ask for it, it will show up. So, people have to know that you want help. You have to start saying, “Oh, I’m getting so burned out,” to your family. “I can’t do this. I need help. I don’t know how much longer I can do this.”
38:25 Pamela D. Wilson: And the other thing is for people to help you, including your family members, they have to feel like you will appreciate what they’re doing. And appreciation is so absent in all aspects of caregiving. And you also have to be a little pleasant and a little likable. If you’re angry all the time and you’re yelling at your family members, of course, they’re not going to want to help you. So, you have to give up a little bit of control, you have to be a little flexible, and you have to be a little more pleasant. This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio program coming to you live from the BBM Global Network and TuneIn radio. We’re going talk more about being burned out after this break. Stay with me, we’ll be back in a moment.
41:35 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio program coming to you live from the BBM Global Network channel 100 and TuneIn radio. Do you know why you’re feeling burned out or exhausted? It might not be what you think. Caregiver burnout and exhaustion happen for many reasons, and it’s not the same reason for every person. Let’s start with one of the beginning reasons, which is feeling like you didn’t have a choice to become the caregiver. Maybe you are a spousal caregiver. So even less choice, because you’re married. I’ve had so many clients in this situation, and even more interesting, some second marriages. Imagine this. You get married a second time. You’re so excited. Six months later, your husband or wife is diagnosed with Alzheimer’s disease or has a terrible accident that results in a need for total care. Getting married a second time, that was a life-changing event. Becoming a full-time caregiver after six months of being married, another life-changing event. Some spouses tell me they didn’t get married again to be a caregiver.
42:47 Pamela D. Wilson: Then there are the adult children who might not have had a good relationship with a parent, and all of a sudden, that parent needs care and a lot of care. They accept the responsibility, but they resent having to help a parent who they may not really like. There are also other situations where adult children and parents get along, but the relationships are strained. Strained relationships add the idea of burden to being a caregiver and result in feeling burned out and exhausted. The idea of not having a choice can result in some caregivers being in denial about the responsibilities, meaning, they do them, but they don’t really want to do them. They don’t want to become involved any more than necessary. And while the help is good, it’s appreciated, it might not be the help that the aging parent needs. Help with resentment and anger, better than nothing, but not always good.
43:44 Pamela D. Wilson: There are times when not every family member should be a caregiver. It’s difficult to admit. Think of it this way: How many times has somebody agreed to help you, and they did so begrudgingly? Their behavior made you regret that you even asked them for help. Being a parent with a child who is reluctant can feel the same. Other caregivers who accept the role may do so, but they feel helpless. They also experience the same burnout and exhaustion as everybody else does, and when there are high-care needs, those are the needs of persons like Rita, and I talked about, so people who need hands-on care or medical care, all the medical tasks, the incontinence, the tube-feeding. Caregivers are not exactly prepared to do these types of tasks. High-care needs result when the health of an aging parent continues to decline, and then the caregiver is in a state of constant worry and stress. But as Rita and I talked, with the right help and support, caregivers can learn to perform these types of hands-on and medical care, but you have to be proactive. Again, you have to ask for that help, which leads us to talk about the idea of the first time for everything.
45:00 Pamela D. Wilson: Let’s say that you’re a son and you’re the only caregiver for your mother, and all of a sudden, she needs help with bathing and she’s become incontinent. That’s a subject that nobody wants to talk about. There’s nobody else to help. It’s all you, what do you do? I hope you obviously step in and help, but when you haven’t done that type of care before, how do you manage? Well, the first thing is just, to be honest and talk to your mom about it, and tell her that you’re uncomfortable. Let her know that you’re willing to help, but you need her direction on how she wants to be helped. And that might sound silly to you. But just asking your mom, that probably brings down her stress level a thousand degrees because you’re helping protect her dignity and making her feel like, even though she needs your help, she is a little bit in control. Then you just take it one day at a time, and you’ll learn how to help. If there’s special needs because your mom is a fall risk or something else, you can always hire a one-time bath aide to show you how to bathe Mom safely.
46:03 Pamela D. Wilson: The other types of stressors for caregivers are the brain disorders. Alzheimer’s, Parkinson’s, dementia, brain injuries, autism disorders. Caring for an aging parent or spouse with one of these is so challenging because the caregiver is working with a person who has a faulty brain. And in simple terms, the brain just doesn’t work like it did before. Aging parents and spouses they can have behaviors that are totally the opposite of the way that they used to be. Parents who were nice, polite, can easily become mean, insulting, threatening, or scary. Or you might get frustrated because your aging parent can’t remember anything, including simple instructions. You have a conversation, and five seconds later, they don’t remember what you said. That is so frustrating for caregivers.
46:57 Pamela D. Wilson: So, all of those behaviors, the memory loss, they might seem like small things if you’ve not experienced them. But when you’re in that situation, they become significant when you’re with that person for extended periods of time. Days, weeks, months. And with dementia, there is a point where the parent or spouse may not even remember who you are. That’s heartbreaking. I’ve had family members who refused to visit when that happens. They say, “Well, if mom or dad doesn’t remember who I am, why should I visit?” That is exactly the reason to visit. We have no idea what goes on in the brains of our loved ones who have dementia or Alzheimer’s. Maybe they’re afraid. Maybe they’re scared to death. Being in the presence of a family member, even if they don’t know your name, they can recognize you by sight, that is comforting. Those visits, they may be stressful for the caregiver, but they result in some comfort, some peace of mind, for the aging parent or the spouse who realizes that something is wrong with their brain.
48:04 Pamela D. Wilson: When caregivers are burned out or exhausted, sometimes having to make this extra effort to go see a parent who might not remember you or to try to work with the healthcare system — the doctors, the healthcare professionals, you are trying to navigate doctor appointments, navigate doctor care, find out how to be trained on using medical equipment. Becoming an advocate for a loved one. It takes energy, it takes thought, and if you’re an exhausted caregiver, you might not be the best advocate for your aging parent or a spouse, and that’s where we’ll talk more about care neglect entering the picture. It’s not that you intentionally do something wrong, but it can result in poor care for an aging parent. It can result in accidents, and really not getting the best care.
48:57 Pamela D. Wilson: A lot of times, this will happen in the workplace when we have a distracted co-worker. We’ll see something that happens, and then a caregiver or somebody in the workplace, they make a mistake, we’re impatient with them. That is what happens in caregiving. It’s so easy to make mistakes. We get burned out. Hope and help for burned out and exhausted caregivers, it’s on my website, PamelaDWilson.com, and on my Facebook page, PamelaDWilson.page, and in my groups. There is hundreds of videos there to support you. Stay with me, will be right back after this break.
50:53 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host, you’re listening to The Caring Generation radio program for caregivers and aging adults coming to you live from the BBM Global Network channel 100 and TuneIn radio. Please share The Caring Generation with family, friends, co-workers, and everyone you know so that we can make caregiving something we talk about. Let’s continue our conversation about how caregiver burnout and exhaustion can result in care neglect for an aging parent or a spouse. Caregiving burnout has this effect of shutting off our brains. And what I mean by this is that caregivers become more forgetful, have more difficulty remembering information, and difficulty focusing. What do you think happens? Prescriptions go unfilled. Medical appointments might be missed or not scheduled. The care that is provided to our loved ones is minimal because the caregiver can only exert minimal effort without physically or mentally falling apart. Tempers might be short. You might unintentionally yell at a loved one, forget to make a meal, give them their medications, or forget something else that’s really important.
52:10 Pamela D. Wilson: I don’t know how many of you remember the very sad news story about the father in upstate New York who dropped his two children off at school, and then parked his car outside and went into work. He forgot that his 15-month-old daughter was still in the car. She died of heatstroke. A similar event with a social worker who took his 4-year-old to daycare and went to work at a hospital. He left his twins in the car, and they died. These stories are tragic. If it happens with parents and young children, I tell you that it happens with adult children and elderly parents. These issues, this type of neglect, it results from a glitch in our brains in how our memories operate. We think that we have this familiar routine, we have it down. We think that we always do something the same way, and we don’t even think about it, like giving an aging parent a medication, and then stress happens, and our brains and our memories, they go haywire. We don’t intentionally plan to do these harmful acts, we don’t intentionally plan to neglect the care of another person, but it happens.
53:26 Pamela D. Wilson: How do we avoid this unintentional harm, the caregiver burnout, the exhaustion? We avoid it by recognizing that it’s happening to us and by not being in denial. Not hoping or wishing that the situation is going to improve magically overnight, that some miracle is going happen. We can’t really rely on miracles; we have to rely on ourselves. We have to take action and do the right thing for our elderly parents and spouses, and it does involve taking a step forward to find and attend a support group or take a course. I’ve talked about the benefits of support groups earlier in the program, and if a loved one has a particular diagnosis, heart disease, Alzheimer’s, Parkinson’s, become more educated. Take a course; there’s online courses on my website. There’s plenty of information all over the Internet. Take a course so that you can become more informed and more confident about how to provide the daily care that your loved one needs. Learn more about the disease, no matter what the disease is, and don’t ignore the needs of the care situation. By becoming more informed, you become a better caregiver. You are more attentive. You ask questions, you advocate for care.
54:53 Pamela D. Wilson: Caregivers, if nobody’s told you that you are amazing or hasn’t thanked you this week for everything that you do as a caregiver or in helping other people, I want to say thank you. Next week, we have another great show planned for you. We’ll be talking about memory loss, answering the question, “My parent is forgetful, is it serious?” And Dr. Jonathan Graff-Radford, he is a neurologist from the Mayo Clinic, amazing person, we are going talk about the risk factors for dementia. This is Pamela D. Wilson, caregiving expert. I’m your host. Thank you for joining me on The Caring Generation radio program for caregivers and aging adults coming to you live from the BBM Global Network channel 100 and TuneIn radio. Visit my website, PamelaDWilson.com for helpful information. I look forward to being with you again next Wednesday evening. God bless you all, sleep well tonight, and have a really fabulous day tomorrow. Until next week.
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Looking For More Help With Caregiver Burnout and Exhaustion? You’ll Find What You Are Looking for in The Caring Generation Library Section Caregiver Burden & Guilt and in the Caring For Aging Parents Blog.
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