Life as a Caregiver: Assessing Caregiver Stress – The Caring Generation®
The Caring Generation® – Episode 60 October 21, 2020. On this caregiver radio program, Pamela D Wilson caregiving expert shares information from a caregiver stress assessment and talks about Life as a Caregiver. Guests Dr. Susan Law and Ilja Ormel from Health Experiences Shares caregiving research, “When One Is Sick and Two Need Help.”
To listen to the caregiving radio show, click on the round yellow play button below. To download the show so that you can listen anywhere and share it with family, friends, and groups, click on the button (the fourth black button from the left) below that looks like a down arrow. Click the heart to go to Pamela’s Spreaker podcast page to like and follow the show. You can also add the podcast app to your cellphone on Apple, Google, and other favorite podcast sites.
Life As a Caregiver: Assessing Caregiver Stress
00:04 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. 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.
00:49 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, advocate, and speaker consultant. I’m your host on The Caring Generation radio program, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. The Caring Generation focuses on conversations about health, well-being, caring for ourselves, and aging parents, all wrapped up with a little humor and laughter that are essential to being a caregiver. The topic for this caregiving radio program is life as a caregiver. Are you a caregiver whose life has been turned upside down by caregiving responsibilities, and you’re trying to adjust? You’re not alone. During this program, I’ll share common concerns from caregivers from a caregiver stress assessment. Recognizing and ranking caregiver stress levels is important to developing and working through a plan to care not only for yourself but elderly parents and spouses.
01:50 Pamela D. Wilson: If you’re curious about the caregiver stress assessment, visit my website, www.PamelaDWilson.com. Click on the Contact Me button for the caregiver survey, and there you can share your caregiving experiences with me. The answers that you submit are confidential, and they help me develop caregiver education and support programs like this radio show. Our guests for the health and wellness segment of the show are from Health Experiences. Dr. Susan Law leads Health Experiences. She completed her Ph.D. at the University of London and has a Master’s in Health Administration from the University of Toronto. She is a Health Services Researcher with an interest in health experiences and patient and family engagement that contribute to improvements in health and healthcare. Also joining us is Ilja Ormel, a Research Program Coordinator and Qualitative Researcher for Health Experiences. Ilja is a Ph.D. student and has an MSc in Public Health. Dr. Law and Ms. Ormel are the authors of the research that we’ll talk about in the second and third segments of the show. The research is called “When One is Sick, and Two Need Help.” It was published in the Patient Experience Journal.
03:10 Pamela D. Wilson: Let’s return to talking about life as a caregiver and everyday experiences from the caregiver stress assessment. Number one—and these are in alphabetical order—not in order of priority. So number one for life as a caregiver is work-family conflict. See if you identify with any of these scenarios from the caregiver stress assessment. Are you stressed between caring for an aging parent, spouse, or another person and meeting other family, personal, or work responsibilities? Are you exchanging time at work for time to complete caregiving responsibilities? Are you worried about losing your job because of caregiving responsibilities? Or have you already lost or given up a job because of COVID and caregiving? Life as a caregiver, the idea of juggling work and family conflict might be pulling you in opposite directions like a rubber band. If you are a young caregiver, you might be juggling work, attending school, and performing family caregiving. Don’t give up. Your life is changing, and it will continue to change. Learning to navigate the uncertain waters of life as a caregiver is the path to success. Create time each week to look at the positives and the difficult situations in your life. What are you learning? Think about starting a notebook or a diary so that you can see the progress you make. If you have decisions to make, use a process. Look at your past experiences and talk to others—in this case—other caregivers, health professionals, and caregiving experts.
04:54 Pamela D. Wilson: Collect information and make some notes. Also, ask yourself questions to assess your stress level. Take the caregiving stress assessment on my website, www.PamelaDWilson.com. Think about where you are and where you want to go in life as a caregiver. Being a caregiver can last years and pose so many unexpected twists and turns. First, you might be caring for mom, and then caring for mom and dad, and then it may be your in-laws, a grandparent, a brother, or a sister. What you’ll find is, as a person, when you become capable of managing life as a caregiver, you’ll be asked to do more and more and more. Being good at anything has pluses and minuses. Don’t we know that? As you look at the changes requested by caregiving, what’s your natural style for responding? Do you believe in prayer? Do you believe in getting the facts and creating a plan? A little of both is needed to succeed in life as a caregiver. Wearing rose-colored glasses and holding on to hope and prayer won’t always get you where you want to go unless you decide to take steps to create a plan for life as a caregiver.
06:10 Pamela D. Wilson: Number two for life as a caregiver is the idea of dependency. Do you feel that your parent or spouse asks for more and has become dependent on you for doing everything? Did you create the situation by being too helpful? The antidote for being too helpful is to start asking for help from aging parents, and spouses, family, and others. Ask your aging parent to do as much for him or herself as possible. Has mom or dad become solely dependent on you as if nobody else can possibly do all the things that you do? Or, they don’t want anyone but you? This type of dependency and thinking—it’s unrealistic. A caregiver stress assessment of interactions with aging parents might confirm that wanting to do everything for aging parents crossed the boundary of being too helpful and had the opposite effect of making elderly parents more reliant on you. By taking away activities that elderly parents can still do for themselves, caregivers can make aging parents and spouses more dependent and less able to care for themselves.
07:17 Pamela D. Wilson: Life as a caregiver for elderly parents can be worrisome. There are times when you can only do so much, and aging parents have to do the rest. A caregiver stress assessment can identify if worries and fears about what can happen to an aging parent are realistic. Do you remember when you were a child and your parents worried about you, but they may have had little or no control over your actions? That situation, it’s now reversed. In life as a caregiver, you can do what you can do. While you may want to protect your aging parent and cushion mom or dad in bubble wrap, so they don’t get hurt or injured, it’s not always possible. What you can do is become more knowledgeable about health, mental health, managing care for elderly parents, and that whole list of uncertainties that result in a lot of worry, sleepless nights, thinking that every phone call from aging parents is an emergency call or a disaster. When I was a caregiver, I did that myself. I would even dream that my phone was ringing at night when it wasn’t. I have been there. I’ve lived through these experiences with both of my elderly parents before they passed away and many elderly clients in similar situations.
08:34 Pamela D. Wilson: Up next is Dr. Susan Law and Ilja Ormel from Health Experiences. They are going to talk about life as a caregiver When One is Sick, and Two Need Help. Many caregivers in my groups are young caregivers, middle-aged caregivers, and caregiving spouses who are looking for hope, help, and support. Their support comes from learning and finding about other caregivers who are in a very similar experience as them. You can visit my website, www.PamelaDWilson.com, click on the Contact Me button, and take my caregiver survey. You can share your thoughts about life as a caregiver with me, and I’ll use that information to develop upcoming radio show topics. This is Pamela D. Wilson on The Caring Generation radio show, live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back.
11:45 Pamela D. Wilson: This is Pamela D. Wilson, Caregiving Expert. I’m your host on The Caring Generation radio show for caregivers, live from the BBM Global Network, Channel 100, and TuneIn Radio. Joining us is Dr. Susan Law and Ilja Ormel from Health Experiences. Welcome to you both, ladies.
12:02 Ilja Ormel: Thank you.
12:03 Dr. Susan Law: Pamela, an honor to be here. Thank you.
12:07 Pamela D. Wilson: Thank you. Susan, a question for you. Your article, “When One is Sick, and Two Need Help,” shares insights about social and policy views of caregivers being a resource instead of a partner or a co-client in need of care. Why is recognizing caregivers so important?
12:26 Dr. Susan Law: Thanks Pamela, a really important question actually. I think there’s at least four reasons why it’s so important to recognize caregivers in all their roles. As partners in care, as co-clients, as important resources, but also actually in another situation—we argue they’re also really important navigators of the healthcare system that is often so fragmented. But I think we have these four reasons really that I thought of, and I think first because they just contribute such an enormous amount of care in terms of physical, emotional, practical, social, and on and on. In Canada, this has been valued in terms of the work of caregiving at several billions of Canadian dollars per year. I know that’s not quite as much as American dollars, but still, the carers and the work is the same. And so their contribution is not only just for the person they’re caring for, but it’s also to the system as a whole. So that’s the first.
13:19 Dr. Susan Law: And I think the second reason is really because in providing this care, there’s a cost for them personally, and this means that if they’re looking after their spouse or their child or parent or friend, they’re giving something up in terms of paid work or other activities they could be pursuing. So it’s a real cost to caregivers. And then thirdly, I think just because of the intensity and effort of caring, it typically takes some form of toll on the caregiver as you and your audience—I know—I’m sure know very well. And this should be recognized by the system and policies and practices, such as workplace leaves for caregiving, and perhaps more time from healthcare professionals in attending to their needs. And just finally, I think they need to be recognized importantly by healthcare teams as the person that may know the patient best, and they should be considered an important source of information as a partner in care. So those are some of the key reasons from my perspective.
14:17 Pamela D. Wilson: Thank you. Ilja, you interviewed 42 caregivers, with 33 being between the ages of 20-59 when they became caregivers. What surprised you most about the stories that they shared?
14:31 Ilja Ormel: Yes, thank you for your question. And this is also a really interesting question, but also a really hard one to answer, and I must honestly say when I started conducting the interviews with the caregivers, I wasn’t really sure what they were going to give me for information. But I found that each interview was really rich and interesting, and every single interview brought its own surprises. But if I would have to summarize it, and the biggest surprise for me was to learn to what extent caregivers have to organize and find out everything on their own. So if you compare it to patients who receive a diagnosis, they are being admitted to a healthcare system, and they find their information resources, and it’s in sharp contrast with caregivers who described—who are struggling to find the right information sources to have to troubleshoot when their care recipients needs change.
15:26 Ilja Ormel: The grey areas that they are navigating with regards to responsibility, like who is going to be responsible for injections? Is that the caregiver who can do that? Or should it be their healthcare professional? So there were so many different challenges that the caregivers described to us, and it was not only for the caregiver but also to navigate their own situation with their work and their health themselves. So that was really the first thing that I learned from the caregivers is that I felt they described this continuous search for care and solutions while they received very little support in doing so.
16:08 Pamela D. Wilson: That is a really great insight. That study also raised concerns by younger caregivers. How are the youth concerns different from older caregivers?
16:17 Ilja Ormel: Yes, so while we started doing these interviews, we learned more and more about the importance of including youth caregivers as well. So we introduced a couple of adult caregivers that started caring for somebody at a young age, and they spoke to us about different effects than adult caregiver’s experience when they give care. So one of the most important things they described was the impact on their social life because they were spending so much time—they were often caring for parents, and they were spending so much time with adults and going home fast after school, that they felt that their social skills were very different from their peers. And also, their choices for education after—like their secondary education or university—were influenced by the caregiving situation, so they would, for example, choose to stay close to home or delay their studies for a while.
17:17 Ilja Ormel: There was this example of a young caregiver who described she had to collect cans to earn money, and she was dressed in old clothes, and how peers would make fun of her. She described how she really didn’t want to be in this situation. So they described being invisible in school as well because nobody knew that they were caregiving, and they were also invisible in the healthcare system. Because they would usually not go in with their parents if their parents and the care recipients would go for healthcare consultations. So these were difficult things they described, and one of the interesting things one of the young caregivers spoke about as well is how to position himself being a child. But at the same time, for example, having to tell his father that he was trying to get him to take his medication and his father really didn’t want to take his medication. So it was hard for him to do this in a respectful way. But these were some of the main points that came up from these interviews.
18:16 Pamela D. Wilson: Well, on the caregivers in my group, I have a lot of young caregivers from actually around the world, and what you’re telling me are some of the experiences that they’ve told me before. Susan, we are going to switch to you, and I’m going to ask you this question, but we’re going to have to cut out to a break, so if you get started, I may have to interrupt you. But health concerns are common among caregivers. How did caregiving impact the health of caregivers in this study?
18:39 Dr. Susan Law: Thanks, Pamela. Well, when we started this, we knew after reading other studies, and of course, there’s serious consequences for many caregivers in terms of their health, but speaking to people individually one-on-one in an interview is just so powerful for us and understanding the real-life, lived experiences and the impact on their lives. So they acknowledged a range of things in terms of the impact on their health. For instance, they often set aside concerns for themselves and attending to their roles and day-to-day responsibilities. They delayed seeking help. Their concerns range from really minor health issues to really major mental health challenges and other big issues and impacts on their health, including suicidal thoughts and the inability to cope any longer.
19:23 Pamela D. Wilson: And Susan, if you can hold on to that thought, we do have to cut out to a break. Listeners, we will continue our conversation with Dr. Susan Law and Ilja Ormel of Health Experiences after this break. This is Pamela D. Wilson on The Caring Generation. You are with me live on the BBM Global Network, Channel 100, and TuneIn Radio. Check out my website, www.PamelaDWilson.com, for a lot of helpful information for caregivers and aging adults. Stay with us. We’ll be right back.
22:10 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host on The Caring Generation on the BBM Global Network, Channel 100, and TuneIn Radio. We’re back to continue our conversation with Dr. Susan Law and Ilja Ormel. Susan, before the break, I had asked you about the impact of caregiving on the health of caregivers. Can you continue that response?
22:30 Dr. Susan Law: Sure, Pamela, thanks. So I think one thing that the caregivers in our study noted that it was often really difficult for them to get the attention of the healthcare team that they were interacting with until sometimes it was too late, and they sometimes felt guilty about asking for help when they felt that the time of the doctor should be focused on their loved ones. So tough for them, and sometimes the result was that they—someone had talked about being admitted to hospital for stress and burnout.
22:56 Dr. Susan Law: But we also heard about that those that found new routines, going walking with friends, finding your interest in cooking, learning how to use Facebook and other social media, and certainly now Zoom, was super helpful to them in terms of coping. But they also recognized that other caregivers who felt lost and alone and they would often reach out to help, and some became really very strong advocates more formally. But they also talked about the abuse some of them suffered, and from the one that they were caring for, and this was really difficult for them. But sleep, fatigue, anxiety were probably the most frequently mentioned. And here’s a quote from a woman named Anne in our study, who’d been brought to the hospital for suspected heart attack. But it turned out to be stress, and these are her words now, “They may be staying for a week, which was great because I just slept for a whole week, it was really nice. Isn’t that terrible? That you have to get to that point to take a break?” So I just thought that was a really powerful quote that’s also in our paper, but it just speaks exactly to the issue here.
24:02 Dr. Susan Law: So for me, I’m very concerned about the health of caregivers in the face of COVID-19 now and the marathon nature of the whole pandemic, because caregivers are—they’re either in a situation where they’re prevented from providing care to those that they’re usually helping if they’re in the long-term care home, for instance, or hospital. So they can’t get in to do the care, which is very stressful, or they’re actually so isolated in their own homes because they’re looking after somebody who they need to protect from COVID-19 and the pandemic. So they can’t get out, and for current separation, I think poses even more health threats for caregivers.
24:40 Pamela D. Wilson: It does, it does. So Ilja, I watched a video on your website, it was a spouse caregiver for her husband named Elaine, and she said a comment, she said, “Well, what’s so special about us that we shouldn’t have this?” Can you share her story that talks about caring for her spouse?
24:56 Ilja Ormel: Yes, so Elaine was a really interesting person to interview, and even though she was one of the most positive persons I’ve ever interviewed, despite also living through the experience of depression and angriness, and wondering why me or why us and we don’t deserve this. But then she also realized that she was thinking negative and that she was not more special than any other people, and that she had to learn to accept the situation. And she described that once she accepted the situation, that she was much more better able to deal with everything, and she then also became a member of the Parkinson’s group because her husband had Parkinson’s, and she became, I think, a very powerful person in her community, and she helped many other caregivers that were taking care of people with Parkinson’s.
25:51 Ilja Ormel: And also one question we asked every participant is how the caregiving situation affected their intimacy, and she spoke really frankly about it, and she explained that it’s really difficult as the caregiver to find a balance because one moment you’re cleaning the bowels of your husband, and at the same time you’re trying to maintain that normal relationship with your husband. And she described she had to put a lot of effort in finding this moment to have this romantic time. She described it and reserved her time in the morning and to dedicate it to their own relationship. But she did acknowledge how difficult these things can be for caregivers and their spouses.
26:40 Pamela D. Wilson: Her story just was so heart-warming. So caregivers in the state also mentioned that they didn’t feel recognized or respected by healthcare providers. What suggestions came out of the study to improve that?
26:53 Ilja Ormel: Yes, so we also asked the caregivers if they have any advice they would like us to share as healthcare professional. So many of the people we interviewed, they suggested that healthcare professionals, in general, could improve their services by involving the caregivers more. So basically, just ask the caregivers their perspectives to listen to their knowledge and experiences. Some caregivers describe it as involving them in the circle of care or seeing them as a partner rather than a resource so that they can become part of the team and they can all provide care together to the care recipient.
27:30 Ilja Ormel: Then they also described—somebody really described it really nicely in an expression, “Caregiving is on-the-job training, but nobody has the manual.” So many people described how they felt, yes,but they’re really powerful learners. They described that they only found the information after they had dealt with difficult issues. So they really advised for healthcare professionals to provide people with timely information, at the right time, at the right moment, in the right format about available resources. And then another major piece of advice was this need to, as Susan already mentioned as well, to also care for the caregivers. So some of the caregivers described how it was so useful for them, and the healthcare professionals told them, “You need to take a break.” And it helped them to communicate it with the care recipient that the doctor had told them to take breaks, so it was much easier for them to make these decisions if they felt the healthcare personnel were backing them up in that sense. Yes, so these were the three most important things that people described that could help them feel more recognized and respected by the healthcare providers.
28:46 Pamela D. Wilson: And Susan, I know we’re going to have to head out to a break, but can you give a quick response to people asking or wishing that employees were more sensitive to the needs of caregivers?
28:57 Dr. Susan Law: That’s certainly a really important issue for caregivers who are juggling work, family, caregiving, and all sorts of other responsibilities. Some had great experiences, compassionate employers, good policies that allowed leaves, and returning to part-time work if possible. But we also had several stories of not so positive stories and never happy endings, and I remember particularly two of our younger caregivers who just really felt overwhelmed and had to leave their jobs, and there was no flexibility at work. So I think this is a really important policy issue, and I think that also somewhere where you can learn from different jurisdictions who have put in place good policies that support caregivers at work.
29:39 Pamela D. Wilson: And do you think that younger caregivers don’t speak up? We got about a minute left. Do they not speak up to their employers about their needs?
29:47 Dr. Susan Law: I think it’s a bit of a vicious circle really, because I think the young people we talk to were in low-paying jobs where there probably was less flexibility for them, and they’re in a different power dynamic, I think, with their employer. So I think it is really tough for younger caregivers, I think when they’re already feeling quite burdened at home to have the courage and ability to speak up and sort of fight their corner, it’s really tough for them.
30:19 Pamela D. Wilson: Thank you, Susan and Ilja. I thank you so much for joining us this evening and also for the work that you do, and for the research that you do, it is so, so very, very needed. Listeners, invite your friends and family to join us every Wednesday evening. This is Pamela D. Wilson, your host on The Caring Generation. You’re with us live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. I’ll be right back after this break.
32:05 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host on The Caring Generation radio program for caregivers and aging adults, live from the BBM Global Network, Channel 100, and TuneIn Radio. The Caring Generation focuses on the conversation of caring, giving us permission to talk about aging, the challenges of caregiving, health, the patient experience, family relationships, and everything in between. Helpful articles are on my website at www.PamelaDWilson.com, in my free caregiving library, and my Caring for Aging Parents Caregiving Blog.
32:41 Pamela D. Wilson: Let’s return to talking about a caregiver stress assessment. How are you managing life as a caregiver? The number three concern is managing the before and the after, which can be called caregiver grieving. Older adults who need care grieve. A stress assessment for caregivers and adults might mention feeling upset that mom or dad has changed so much. Change happens in the ordinary course of aging. Health also can vary significantly with the diagnosis of Alzheimer’s or dementia. Adult children caregivers voice concern that mom or dad isn’t mom or dad anymore. Some say they don’t want to visit. Others don’t know what to say. Family caregivers see that friends who used to visit stop visiting. If you’re experiencing life as a caregiver missing the old mom and dad—know that they’re still there.
33:30 Pamela D. Wilson: Caregiver stress related to grief also brings up the subject of doing more. Family caregivers, some not all, experience grief from not being able to do more. A sense of helplessness can exist when watching the health of elderly parents decline. There might be nothing that can be done to change the situation, especially that progression of memory loss. Aging adults with mental illness or personality disorders—they can be unkind or mean, especially in public. An example, you take an aging parent to a doctor’s appointment, and mom or dad becomes impatient in the waiting room and makes a scene. My suggestion, make an apology, and remain calm. Don’t react and escalate that behavior. In those situations, your reaction can result in an even greater reaction from your elderly parents. And if you’ve tried, you know that talking to an elderly parent about behaviors may be a dead end. Especially if they have memory loss, they don’t even remember having the behaviors. You can change your responses and behaviors, but you can’t change that response or behavior of an elderly parent who doesn’t want to change or can’t remember their behaviors.
34:45 Pamela D. Wilson: Life as a caregiver includes responding to the unexpected by being calm, optimistic, and realistic about health concerns while supporting day-to-day abilities. The caregiver stress assessment number four concern is managing emotions—emotional ups and downs—follows the idea of grieving. Caregivers express feelings of anger, of losing control of life, and feeling bad about being edgy or irritable. Saying, “I don’t want to be a caregiver anymore,” is perfectly normal, considering the circumstances and the stress levels that occur as life as a caregiver extends beyond months into years and extends year after year. Sometimes with no end in sight. How many of you experience crying spells when you feel overwhelmed? A good cry every now and then is needed. But if crying becomes a pattern, it’s possible that you might be depressed. If managing emotions is a concern, tips on How to Stay Emotionally Balanced is in a recent Caring Generation radio show podcast. I’ll put the link in the show transcript.
35:54 Pamela D. Wilson: Research confirms that all of the emotional ups and downs of caregiving can affect mental and physical health, like Susan and Ilja talked about during the interview, the number five caregiver stress assessment concern. Ask yourself these questions to know if life as a caregiver is affecting your health. Do you have more bad health days than good health days? Do you feel that you don’t have time to take care of yourself, to exercise, go to the doctor or eat right? Have you gained or lost weight? Are you unable to sleep through the night because of worry or anxiety? Do you have aches and pains that are new? Back pain, headaches, stomach upset? Do you get a cold, get over the cold, and become sick again? If yes, your immune system may be suffering from the effects of life as a caregiver. For any person experiencing these issues, whether a caregiver or an aging adult, regular and consistent medical care is so important to stop these conditions from getting worse. This brings us to the number six caregiver stress assessment concern, which is time. I don’t know any person who doesn’t wish or dream for more time. The idea of time constraints in life as a caregiver can be extreme, as revealed by the caregiver stress assessment.
37:13 Pamela D. Wilson: Trying to do it all means that some areas of life receive more focus than others. Caregivers can feel that they aren’t doing a good job at anything. How many of you feel this way? Exhausted, hopeless, discouraged? Or do you feel positive and energized? Do you keep trying the same things and getting the same result? If so, it might be time to think a little differently. How are your people skills? Do you consider yourself to be a good planner? Do things that you plan turn out the way that you expect? If there’s a gap in any of these, between the effort and the work and time that you’re putting in and the results that you’re getting back, do you know what’s missing? If you are thick in the middle of caregiving, sometimes our brains and our minds are so exhausted that we can’t even figure out what’s missing. How many of you are familiar with that statement, “couldn’t see the forest for the trees”? In simple terms, this means not understanding or thinking about the broader situation because you’re looking at the details, the parts, or the pieces.
38:21 Pamela D. Wilson: Life as a caregiver involves managing continual change, a lot of details, and so many moving parts. Sometimes we’re lucky just to keep up in any given day. To think about that concept of time relative to the hours that you have in the day, look for the forest. Look for the larger situation. It’s that train wreck that is about to happen because your mind is focusing on other things. For working caregivers, this might mean losing a job because you’re not communicating family caregiver issues with your supervisor, who only sees work not being done without really understanding what is going on in your family or in your life.
39:08 Pamela D Wilson: Life as a caregiver is complicated. Sometimes, you don’t know what that bigger picture is that you should be focusing on because of a lack of knowledge. Ilja gave a perfectly humorous example about caregivers being on-the-job training, so you’re learning as you go, and there’s no menu, there’s no learning on how you get from point A to point B. And don’t we all know that that is so true? Sometimes because we’ve never been a caregiver before, we have no idea what it is we’re supposed to do. All we feel is that time pressure of trying to keep up and more and more responsibilities growing, more projects growing. The frustrations of trying to balance everything, but it is possible when you identify the main issues that are stressing you out and choose to work on the first one, and the second one, and the third one, and the fourth one. We’ll have more on this coming up after the break. This is Pamela D. Wilson on The Caring Generation. You are with me live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back.
41:41 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, author, and speaker consultant on The Caring Generation, live from the BBM Global Network, Channel 100, and TuneIn Radio. Let’s return to talking about time, a very hot topic from the caregiver stress assessment. Time—there’s never enough, and we can’t turn back the clock. How do we get more time? A simple aspect of time management is planning. The first knowledge gap for caregivers about planning is not making time to plan. Creating a care plan for elderly parents is mandatory if you want to reduce stress and all of the topics that arise from a caregiver stress assessment. Your stress level is probably rising now, just thinking about having to create a plan. If you’re not a planner, it might be difficult to visualize the benefits of making a plan. Planning is a certain path to where you want to go. The key is to create a thoughtful plan. How do you do that? Where do you start? Start from looking at those gaps, things that aren’t working the way that you want, be realistic, and be optimistic, identify who can help you and who can’t or won’t help you. Believe that life as a caregiver can get better. Ask for help. Seek out the experiences of other caregivers. Join a caregiver support group—mine is online on my Facebook page. It’s called the Caregiving Trap.
43:02 Pamela D. Wilson: If you’re a working caregiver, ask your company Human Resources Department and managers for caregiver support programs. If they exist for child care, why not for elder care? Ask for the experiences of other caregivers to create a plan that works for you to manage time. That may mean having conversations with your parents, who still want you to do it all. Admit that you can’t do it all. People will watch you do it all, and they won’t get involved. Your elderly parents won’t ask what they can do to help you unless you say something. They’ll continue to ask for more and more, and you will burn out. You may already be an exhausted, burned-out caregiver. How do you know? Visit my website, click on that Contact Me button, and take my caregiver survey. You’ll have the opportunity to think about gaps in life as a caregiver and ask for the help that’s important to you. The topics for this radio program come from you. The articles on my caregiver website they’re for you. Help for caregivers is here. Find your voice and get the help you need, I’m here, and I am listening.
44:05 Pamela D. Wilson: More caregiver stress assessment questions. Do you have difficulty making decisions? Are you feeling overwhelmed? Are you fearful of what the future holds? Are you concerned that you’re doing so much you won’t be able to take care of your loved one much longer? Is your health getting worse? The answers to these questions relate to the number seven concern—mental confusion and stress. Similar to the concern of time management benefiting from planning and a clear direction, resolving mental confusion means taking mental breaks. In today’s world, with that constant stream of technology bombarding our minds, chaos or commotion at home, and minds that never shut up, it can be really difficult to find a quiet space with no noise to clear our minds. But when we make time to sit and think, when we make time to meditate, our minds can reset and gain clarity of thought. Life as a caregiver focuses so much on problem-solving. You need your wits about you. Exhaustion and stress make it difficult to think clearly. What if you sat quietly for 20 minutes a day in a dark room or a room absent of all noise? Does any place exist? Can you soak in the bathtub to find 20 minutes of quiet? What about driving to a relaxing spot, closing your eyes, and sitting in your car? The hint for that, though, is to set your phone alarm so that heaven forbid, you don’t fall asleep and forget to return to where you came from.
45:40 Pamela D. Wilson: If you’re like most caregivers, closing your eyes for 20 minutes might result in that much needed nap of several hours. Close your eyes. Instead of thinking about problems, ask for solutions. Ask for help to show up in your life. Ask for wisdom, grace, patience, and guidance. Send away negative thoughts, judgments, and beliefs that there is only one right way or one right solution. There are many. Insights and solutions can come to us out of the blue. Learn to pay attention to your intuition. That little tap on your shoulder or that thought that quickly passes through your mind could be the solution you’ve been waiting for. Listen to the suggestions that come into your mind when you ask for help and test them for practicality and reasonableness. Give it a try and see what happens.
46:32 Pamela D. Wilson: Caregiver stress assessment concern number eight is losing yourself. Who are you today? How has life as a caregiver changed you? Have your friendships and social life suffered because of caring for aging parents or a spouse? Do you feel lonely or isolated? What happened to all those activities you enjoy—having personal time and you time or privacy? In a multi-generational household, or if elderly parents live with you, maintaining that sense of self can take a lot of effort. Some caregivers give up their lives to care for an elderly parent. If this is you, what’s that one thing that would make the most significant difference in your life? Is it daily time for exercise? Is it a weekly phone call with a best friend? How about reading a book or the newspaper uninterrupted for 30 minutes? Find that one thing and make time to do it. Then find the next thing until you start to feel that little piece of you coming back into your life. Rebuilding your life builds self-esteem and confidence to parts of ourselves that can be negatively impacted by life as a caregiver.
47:45 Pamela D. Wilson: Concern number nine for caregiving families is money. Money to pay for outside care, a care community, or a nursing home. We want the best care for ourselves and our loved ones. Gaining knowledge about the cost of caring for elderly parents is another caregiving radio program that can prepare you for discussions within the family about how to pay for elderly parents’ care. This and all of the topics from the caregiver stress assessment are included in my online caregiver program. It’s called Taking Care of Elderly Parents: Stay at Home.
48:20 Pamela D. Wilson: Ask your corporations and your groups to sponsor this program for working caregivers. More information about taking care of elderly parents and how I help caregivers is on my website at www.PamelaDWilson.com. It is in my caregiving blog. It’s here on this weekly radio show and in a lot of videos on my Facebook page. On my website, if you go to the How I Help button, you can check out the drop-down menus there. There is a drop-down for the Basics, for Corporations and Groups, how I help through Digital Learning Caregiving Programs. I help a lot of companies in the caregiving and financial planning and legal space, create a workplace where people matter because many of these organizations have working caregivers because they are in that caring space. A lot of these working caregivers don’t talk about the stress that they face. They may be considering giving up their jobs to care full-time for elderly parents, which has a huge effect on the life of a working caregiver. So check out my website, it’s www.PamelaDWilson.com, click on the How I Help button and look at those drop-downs.
49:30 Pamela D. Wilson: This is Pamela D. Wilson, caregiving author, expert, and speaker consultant on The Caring Generation. You’re with me live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back.
52:04 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host on The Caring Generation radio program for caregivers and aging adults, live on the BBM Global Network, Channel 100, and TuneIn Radio. Share The Caring Generation with your friends, family, co-workers, the companies where you work, your social groups at church, and everywhere. One in four people you know are caregivers looking for hope, help, and support that is here on The Caring Generation every Wednesday and on my website, 24/7 at www.PamelaDWilson.com. Coming up next week, the importance of caregiver and effective patient education strategies and nursing home residents’ rights. We’ll talk about steps you can take to make sure that you and elderly parents receive the care that you want and need from the healthcare system.
52:50 Pamela D. Wilson: Let’s talk a little more about life as a caregiver and the idea of a caregiver stress assessment. You might think, “Oh, I am always stressed, there’s nothing that can be done to take care of that.” There is still something that can be done to reduce caregiving stress if you are willing. By taking the caregiver stress assessment on my website at www.PamelaDWilson.com, go to the Contact Me button and scroll down, you can help yourself and other caregivers. Think about that one thing that would make the most significant impact on life as a caregiver. Is that one thing something you control, or can you control the way that you react to that one thing? Is your caregiver stress assessment goal to reduce anger? Will daily exercise reduce your stress? Do you need help in assessing your caregiver situation? What’s it going to take for you to improve life as a caregiver? A million thoughts might come into your mind, or you may be so exhausted, so burned out that you have difficulty thinking of any positive aspects of life as a caregiver.
53:58 Pamela D. Wilson: Either way, you have the opportunity to start now, to take one step forward and then another and another. Start small. Change doesn’t happen overnight. Especially if you’re a little stuck, tired and exhausted. Start a daily list. Make notes about your personal caregiver stress assessment. The blessings, the challenges, and the knowledge gaps. It’s not possible to have all the solutions. It is possible, though, to meet others who can help and who have the solutions. Open your mind and your world. Answers are waiting for you if you ask.
54:33 Pamela D. Wilson: Concern number ten for caregivers is how to face fears with courage when inside all you feel is doubt and worry—it’s so common right now with COVID. The way to do this is to retrain your brain. Don’t worry about things that you can’t control. Stop your mind from traveling to all of those bad things that might happen to an elderly parent, a spouse, or yourself. Stop your brain from bringing these things into your mind and imagine a different result. Imagine a different life. Concentrate on what you can control and the steps that you’ll take. If you’re worried about a particular event happening, play the worst-case game scenario. Think about what can happen so that you’re prepared. That usually happens, and we realize that our worst fears don’t happen. Caregivers ask for the health education that you need from elderly, parents, your family, and the workplace. Step into your life, act, and make progress every day. Share your concerns and successes with me in the caregiver stress assessment on my website at www.PamelaDWilson.com. Invite your friends and family to join us here every Wednesday night on The Caring Generation radio show.
55:40 Pamela D. Wilson: I’m Pamela D. Wilson, caregiving, expert advocate, author and speaker, consultant. God bless all of you caregivers. Thank you so much for everything that you do. Sleep well tonight, have a fabulous day tomorrow, and a great week until we are here together again.
55:56 Announcer: Tune in each week for The Caring Generation with host Pamela D. Wilson. Come join the conversation and see how Pamela can provide solutions and peace of mind for everyone here on Pamela D. Wilson’s The Caring Generation.
Wondering how to manage caregiver stress? Take Pamela’s caregiver stress assessment HERE.