How Do I Accept My Life Choices As a Caregiver
The Caring Generation® – Episode 121, January 19, 2022. On this episode caregiving expert, Pamela D Wilson shares the experiences of caregivers who give up parts of their lives to care for loved ones. Learn how feeling stuck in care situations affects the lives of family caregivers. Guest Dr. Donna Benton shares information about programs offered by the California Caregiver Resource Centers.
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How Do I Accept My Life Choices As a Caregiver?
0:00:04.0 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.
Watch More Videos About Caregiving and Aging on Pamela’s YouTube Channel
0:00:37:51 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, consultant, and guardian of The Caring Generation. The Caring Generation focuses on the conversation of caring. Giving us permission to talk about aging, the challenges of caregiving, and everything in between. It’s no surprise that needing care or becoming a caregiver changes everything. The Caring Generation is here to guide you along the journey to let you know that you’re not alone.
0:01:04:07 Pamela D Wilson: You are in exactly the right place to share stories, learn about caregiving programs and resources to help you and your loved ones plan for what’s ahead. Invite your aging parents, spouses, family, and friends to listen to the show. If you have a question or an idea for a future program or Livestream caregiver event, share your ideas with me by responding to my social media posts on Facebook, Instagram, Twitter, YouTube, and Linked In, or complete the caregiver survey on my website. You can find the survey under the Contact Me Button.
0:01:42:63 Pamela D Wilson: Today, we are talking about how do I accept my life choices as a caregiver? While many caregivers say that they didn’t have a choice to become a caregiver, the action of accepting care responsibilities is a choice. Caregiving can be viewed as a duty depending on the relationship between the caregiver and the care receiver. Culture, family beliefs, and the expectations of aging parents complicate family relationships. Adult children feel pressured to become the caregiver.
0:02:19:34 Pamela D Wilson: There are times when young children are placed in the early role of being a caregiver for a sick parent. One parent may work while the other is home. Young children help in the mornings and evenings before and after school. Children caregivers trade a childhood of play for responsibility while watching their schoolmates have a different life. If any person can say that they didn’t have a choice to become a caregiver, it would be a young child who requires the support of parents in the way of housing, food, and guidance.
0:02:58:91 Pamela D Wilson: Young children who become caregivers have no choice but to provide care for a sick parent because the healthy parent has to work to support the family. Next in line for not having a choice are spousal caregivers. The vow of until death do us part can mean years and decades of caregiving for a sick spouse. Adult children caring for parents can experience similar lengths of time in caregiving positions. The first step in how do I accept my life choices as a caregiver is to get comfortable talking about caregiving as a family role.
0:03:39:89 Pamela D Wilson: Aging parents fail to initiate conversations if they have not yet been caregivers themselves. However, if parents have been caregivers for their parents, they have some knowledge and experience about trading parts of life to care for aging family members. Some parents don’t bring up the topic because they don’t want to be a burden to their children or hope that they won’t have health issues requiring care.
0:04:05:91 Pamela D Wilson: Not talking about caregiving in families is naïve. It’s going to happen. Aging—especially if one is in poor health—can eventually mean hardships and difficulties. Let’s talk about spousal caregiving relationships and the words in marriage vows. For better for worse, for richer, for poorer, in sickness and in health to love and to cherish until we are parted by death.
0:04:40:88 Pamela D Wilson: We say these words. But, do we really understand the consequences when we are young, healthy, and relatively problem-free? It’s not until we hit a few bumps in the road and life gets difficult that we find ourselves asking how do I accept my life choices as a caregiver. Let me share several examples to paint a picture of the experiences of caregivers. A daughter who works full time cares for her mother and a disabled brother or sister who can’t help much around the home.
0:05:15:82 Pamela D Wilson: After ten years the daughter is burned out. Her mother could live another 30 years. What advice would you give the daughter? A spouse in a marital relationship didn’t take good care of his or her health when younger. By age 60, the unhealthy spouse is diagnosed with COPD, which is a breathing issue and type 1 diabetes. The caregiving spouse, who has focused on taking care of his or her health, feels resentful about living the rest of life as caregiver.
0:05:49:37 Pamela D Wilson: Tied to the house. Caring for a spouse who didn’t care enough to care for him or herself. A young daughter feels responsible for the care of her father, who has a mental illness and is verbally abusive. The daughter has given up a career and going to college to care for dad. She feels hopeless about the situation and her future, including the ability to support herself financially after her father dies.
0:06:17:69 Pamela D Wilson: I could share hundreds of caregiving stories where caregivers ask how do I accept my life choices as a caregiver. For most caregivers already in these situations, my first recommendation may be too late. But don’t worry. I have other recommendations. However, for those of you who may still be early enough in your caregiving journey, my recommendation is to begin talking about the care needs of your aging parent or a spouse now.
0:06:49:98 Pamela D Wilson: Talk about the reality of health conditions and the future consequences. If you don’t know, begin attending medical appointments to learn about the conditions, medications, and predictions for health. Without this information, you will be an ineffective caregiver responding to crisis after crisis. You may already be doing this. Understanding medical conditions are key to identifying future care needs and what your responsibilities might look like as the caregiver.
0:07:22:97 Pamela D Wilson: Time commitments, financial commitments, career tradeoffs, education, personal life, marriage, and the ability to save and plan for your retirement. Caregiving is a lifelong responsibility. It begins extend for years as the number of people you care for increases. First, you might raise children. Then care for one or both sets of aging parents if you are married.
0:07:54:03 Pamela D Wilson: Then spousal care. One spouse dies before the other. Grandparents or someone else in the family may need care. Your older brothers or sisters may rely upon you. Then eventually, you will need care. Aging and health issues are not pleasant discussions. Society avoids these topics because there are so many other distractions. My recommendation is to learn as much about health and well-being as early as possible.
0:08:23:23 Pamela D Wilson: The challenge is that there is always that next thing we want. If we chase happiness, that means we’re not happy or satisfied with our life. We may see friends who have more than we do and want what they have. Looking in from the outside, the lives of others may look ideal but may be problem filled with things they want but can’t have. A better job, loving relationships, higher education, or better health.
0:08:54:41 Pamela D Wilson: Living well takes a lot of work and effort that may seem like too much of a struggle. If you are struggling to pay the bills, your focus may be more on money than making time to exercise. Any negative experiences in the past with friends, family, or at work can cloud judgment about future experiences and result in making poor decisions. There are a lot of places where things can go off track when life is happening, and we’re distracted or not paying attention.
0:09:24:88 Pamela D Wilson: On the other hand, know that there are a lot of places where things can go well if you know what to look for and take action. That’s the part of how do I accept my life choices as a caregiver that we will continue to talk about. I want to share information about the guest for this week’s show. Dr. Donna Benton, from the University of Southern California, shares information about a program for caregivers in California called Caregiver California that other states may benefit from investigating if they do not currently have a similar program. This interview is in the second half of the show.
0:10:02:12 Pamela D Wilson: But first, a little background about Donna Benton, Ph.D. She is a Research Associate Professor of Gerontology at the USC Leonard Davis School of Gerontology. Benton is the Director of the USC Family Caregiver Support Center (FCSC) and the Los Angeles Caregiver Resource Center (LACRC). She has over 30 years of experience in providing direct service, advocacy, and programs for families caring for persons with dementia.
0:10:29:15 Pamela D Wilson: dementia. She was appointed to the CA Master Plan for Aging Stakeholder Advisory Commission and the CA Commission on Aging (CCOA). Her research focus is on the development of online evidence-based interventions for family caregivers to improve mental and physical health and well-being and prevention of elder mistreatment. She also serves as a mentor to students interested in advocacy for caregivers.
0:10:56:64 Pamela D Wilson: Caregivers—advocating for your needs and the needs of loved ones can feel overwhelming if you don’t have support. Pay it forward to help others dealing with health, aging, family relationships, or caregiving issues by sharing information about this show and my website pameladwilson.com. The Caring Generation is available worldwide on your favorite podcast and music apps: Apple, Google, I Heart Radio, JioSaavn, Spreaker, Amazon Music, Breaker, Deezer, Listen Notes, Pandora, Player FM, Pocket Casts, Podcast Addict, Podchaser, Stitcher, Spotify, Tune In, and Vurbl.
0:11:37:87 Pamela D Wilson: You don’t have to manage caregiving or health issues alone. Visit my website pameladwilson.com to schedule a 1:1 telephone or video consultation with me. Click on How I Help, then Family Caregivers, and then Eldercare Consultation. We’re off to a break. This is Pamela D Wilson on the Caring Generation. Stay with me; I’ll be right back.
0:12:31:89 Pamela D Wilson: This is Pamela D Wilson on the Caring Generation. Tips, articles, videos, links to The Caring Generation podcast, my book The Caregiving Trap: Solutions for Life’s Unexpected Changes, my caregiving blog, and online webinar courses to help you care for aging parents, family members, or yourself are on my website at pameladwilson.com.
0:12:53:43 Pamela D Wilson: Let’s continue our discussion about how do I accept my life choices as a caregiver. The ideas we are about to talk about are broad and can apply to any area in your life. I will relate each one by giving a specific caregiving example. Before the break, we were talking about life events going off track or happening exactly as we wish.
0:13:18:04 Pamela D Wilson: Part of today’s challenge is the amount of distractions and choices we have. One hundred years ago, life had fewer complications because we didn’t have technology. Imagine how life might be uncomplicated if we didn’t have television, computers, and cellphones. We would spend our time very differently. Maybe spend more time with people than electronics or more time outside which is good for the mind.
0:13:50:96 Pamela D Wilson: Learning about the inventions of the 1920s may help you realize how much life has changed. Here are some inventions that are still around today compliments of familysearch.org. I’ll post a link in the show transcript to the article. 1923 the electronic traffic signal – the red, green, and yellow lights you see today at street intersections. Clarence Birdseye invented quick frozen foods like frozen peas.
0:14:20:97 Pamela D Wilson: Earle Dickson, a Johnson and Johnson employee created the Band-Aid®. 1922 Ralph Samuelson invented water skiing. The first electric blender was made in 1922, thanks to Stephan J. Poplawski, who initially made it for milkshakes and malts. Television was invented in 1927 by Philo Taylor Farnsworth. I don’t know about you, but I remember when my parents had a black and white television while some of the neighbors had color television.
0:15:57:04 Pamela D Wilson: That was a big deal. I remember watching Gilligan’s Island in color. It was an entirely different experience than black and white. Comparing 2022 with the 1920s represents the idea of contrast that takes us to an example of how we can get used to things. Then something changes, or we do something differently and realize that there is another world outside of caregiving that goes on every day.
0:15:28:68 Pamela D Wilson: This contrast might have us asking, how do I accept my life choices as a caregiver when I’d really rather be doing something else. Let’s talk about things we adapt to or get used to. How many of you have things that you “live with”? A leaky faucet, a carpet in your home that could be replaced, but you think, well, if I replace it, it’s just going to get dirty again. Maybe your health isn’t the best, or you are a few pounds overweight.
0:16:00:13 Pamela D Wilson: Instead of acting to correct these things—that don’t seem super important—we allow them to go on until they get so bad we have to do something about them. Mom or dad trips over that dirty, worn carpet and breaks a hip. They weren’t super healthy before the fall. After being hospitalized, they are not recovering as quickly as you or they hoped.
0:16:24:40 Pamela D Wilson: Time passes, and you realize that your parents can’t live at home alone because they can’t manage. All of those things that they got used to have combined to become a problem that can no longer be ignored. How do I accept my life choices as a caregiver or as the person who needs care? Sometimes we hear, “well, if someone would have told me this could happen, I might have listened.”
0:16:55:05 Pamela D Wilson: Is the answer to how do I accept my life choices as a caregiver really dependent on others constantly telling us what we should do? If that’s the case—that won’t work. No one wants to be told what to do. And if we constantly have to be told what to do, we lose the ability to think, problem-solve, and reason which is crucial for managing through how do I accept my life choices.
0:17:29:03 Pamela D Wilson: As the result of these contrasts, life for caregivers becomes not so much fun. If our parents can no longer live alone safely, we may have to spend a couple of weeks searching for an assisted living community. Then we have the list of other things involved in a move. Cleaning out the home of aging parents, packing and moving, finding new doctors, and everything that goes along with creating and relocating a household.
0:18:02:66 Pamela D Wilson: While you may be wondering how do I accept my life choices as a caregiver, aging parents may be asking themselves how do I accept the life choices that resulted in these problems? There may be regrets about missed opportunities, not having better health habits, procrastinating to get new carpet, not making a doctor appointment, or hoping that the situation would get better by itself.
0:18:37:07 Pamela D Wilson: The caregiver is swept into a continual list of to-dos without much discussion about whether this level of involvement will be permanent. Remember item #1 for how do I accept my life choices as a caregiver? Talk about caregiving and what’s involved before it gets to the point of burnout, resentment, anger, and toxic behaviors. If you missed that discussion, it’s time to have it now.
0:19:07:97 Pamela D Wilson: Some caregivers become swept up, overcome by caregiving responsibilities that they don’t notice until they become sick and have to take a week off. Others take a real vacation and return home to realize that they no longer want the life of a caregiver. Or you may be in a moderate care situation. Able to live part of your life but tied to caring for an aging parent or a spouse because of health issues that require daily care.
0:19:39:88 Pamela D Wilson: Those dreams of retirement and driving across the country in a camper or minivan are gone. Let’s look at a life example of a 60-year-old who needs care. You worked all those years but didn’t take care of your health. You’re 60 and worried that you may not be able to work until age 65. How do you fill in that five-year income and insurance gap when you already have major healthcare expenses?
0:20:10:32 Pamela D Wilson: Or your job may have been a victim of COVID. You were laid off, and while you want to work, it may be difficult to find a job. This is when the contrast of life before and after caregiving can be a downer. We want our old life, but we may not be sure how to get it back. Or the work and effort necessary to get it back seems like too much of a struggle. This is where our brains get in the way. Our brain assigns meaning, good or bad to our life experiences but only if we let our brain take control of our thoughts.
0:20:51:94 Pamela D Wilson: In these how do I accept my life choices as a caregiver or the person needing care situations a little reframing can be helpful. We’ll talk about reframing after the break. While all caregiving situations have differences, many have similarities. If you are working and caring for family members and your company doesn’t offer support or education programs for caregivers, it’s time. Share my information with the human resources department at your company.
0:21:24:98 Pamela D Wilson: I provide on-site and virtual programs for corporations and groups interested in supporting caregivers. More information is on my website at PamelaDWilson.com. You’re with me on The Caring Generation, this is Pamela D Wilson. Stay with me. I’ll be right back.
0:22:11:81 Pamela D Wilson: This is Pamela Wilson, caregiving expert, author, and speaker on The Caring Generation. If you are a caregiver interested about being proactive about the care of an aging parent, my online webinar course Stay at Home: Helping Elderly Parents Stay at Home and Beyond offers the processes and systems I used to manage care for my client for more than twenty years. Visit the caregiver support Store Page on my website pameladwilson.com to learn more.
0:22:41:76 Pamela D Wilson: Let’s talk about more tips that can help answer the question how do I accept my life choices as a caregiver? I’m not saying that following any of these recommendations is easy. Think of them as habit changes that require at least 30 days to get into the groove. But know that change is possible if you really want to make the change. Before the break, I brought up the idea of reframing. Which is simply looking at a situation differently by changing what the situation means to you.
0:32:19:29 Pamela D Wilson: A simple example is the idea of change. Some look at change negatively. Others look at change as an exciting opportunity. So whatever the caregiving situation you are facing, how can you look at it from a different perspective? Here’s an example. Your mom is constantly complaining about everything. She is critical of other people. Never seems to be happy.
0:23:44:62 Pamela D Wilson: Her mood is affecting the way you think about her, react to her, and the time that you want to spend – or not spend with her. Let’s make the assumption that your mother cannot change. So thinking about how do I accept my life choices as a caregiver, how can you reframe the situation. Here are a few thoughts. Your mom doesn’t feel well, so she is unable to have a positive attitude about anything.
0:24:13:81 Pamela D Wilson: She also feels out of control about her life and the care she receives. She resents you for being healthy and happy. This reframing might bring some empathy into the situation or at least help you not to take her moods negatively. So what can you do if you want to remain in a relationship with her as a helper. Here’s a list of options.
0:24:37:46 Pamela D Wilson: Do only what you have to do for her but limit the time you spend with her so that you are not emotionally drained. If you live in the same household, that may be a little more challenging. Create a man cave or a woman cave in your bedroom or a room in the house where you can watch television and have alone time. If possible, find another person to come into the home to provide care so that you are not the only caregiver.
0:25:05:06 Pamela D Wilson: Caregivers too often become the only person an aging parent or a spouse sees. Having a different person in the home can provide a break for the caregiver and give mom, dad, or a spouse someone else to talk with. If your goal is to remove yourself from the care situation, then there is a little more work to do. How do I accept my life choices as a caregiver involves accepting your part in the situation.
0:25:30:60 Pamela D Wilson: Even if you think your behaviors and responses were perfect, can you find any area where your actions may have complicated or made the situation worse? When we are in a situation that seems to go on and on—like caregiving—we can have expectations or become as biased in the way we think as the person we care for. Remember our earlier discussion of habits that become routines and get worse? Our brain has a mind of its own. Thoughts can turn into toxic thinking that isn’t helpful for caregiving relationships.
0:26:10:43 Pamela D Wilson: By spending some time examining why you feel the way you do and reframing the situation, it may be easier to accept the current challenges and find solutions. Being realistic—removing yourself from a care situation may not be easy. Your parent may be angry. Blame you for the situation. Threaten you in one way or another. Realize that these behaviors are a parent acting out because of their feelings that they own.
0:26:46:27 Pamela D Wilson: Feelings of anger that their spouse—your mom or dad—died. Insecurity, worry, feeling abandoned, you know that list of emotions goes on and on. Begin having conversations about boundaries so that parents are aware that the present situation is not going to continue and there will be changes coming up. Give mom, dad, or a spouse a heads up that you will be looking into other care arrangements to present to them.
0:27:18:57 Pamela D Wilson: The reactions of your parent may be similar to when a child throws a tantrum. Parents either stand by and watch until the child calms down or shows empathy but holds their ground. After you have done your research, which may include meeting with a caregiving expert like myself or a care manager, so that you are aware of all of the options you can then meet to present the options.
0:27:48:50 Pamela D Wilson: You can say, “mom or dad, by your reaction, I see that you are not happy with X. Under the circumstances, this is what I need to do for myself. I have done my best to help you, but I want more time for my life. These arrangements can offer the care that you need.” This is a tough conversation. You might feel intimidated or be afraid to take this step. If so, you’re in good company. There’s thousands of people, tens of thousands of people, probably millions of people who would rather avoid having this conversation.
0:28:25:49 Pamela D Wilson: When having the conversation, it is important to be calm and factual as possible to avoid emotional reactions on both sides. Practice having the conversation. Role-play what you think your parents will say so that you have a good response. Most importantly, make sure you schedule a time to talk to your loved one so that they can be prepared for the discussion.
0:28:50:28 Pamela D Wilson: Another component of managing through how do I accept my life choices as a caregiver is changing habits for the caregiver. If caregiving responsibilities have become a drag on your mental health, attitude, or thinking, create new positive habits and follow through daily. Accept that change, although initially difficult, will have positive benefits in the long run.
0:29:18:21 Pamela D Wilson: Realize that your parents will have to make changes resulting from your desire for more independence. Change is hard for everyone. So much of what the focus on today is immediate gratification. We want something, and we get it. Changing or creating a new habit rarely shows immediate results. We can make progress. Have a setback, have to start all over again, and then return to making progress.
0:29:49:05 Pamela D Wilson: The effort to succeed at making a change can be intimidating. Find a good support system like an online caregiving group and share your feelings and plans. It’s likely that someone else in the group may be experiencing a similar situation and may be inspired by your willingness to share. Accepting life choices as a caregiver can also mean accepting a situation and the effect it has on your life and learning to be okay with your choice.
0:30:23:67 Pamela D Wilson: It may mean that you no longer take vacations because you have to be home for mom, dad, or a spouse. In all life situations, there can be a sense of grieving what we feel we have lost. The goal is to find something positive to replace the losses. Maybe a new hobby or an activity you enjoy. The longer we live, the longer we realize that we can’t always have what we want. And that sometimes what we want may not be good for us.
0:30:56:27 Pamela D Wilson: In a recent Livestream event for caregivers, I talked about gaining wisdom through experience. For example, when we are young, we lack experiences and the repetition of events from which we can learn. We learn with time and by making mistakes. Hopefully, though, not making the same mistakes over and over again. What would you tell your younger self today if you could? What wisdom would you impart? What have you learned?
0:31:27:17 Pamela D Wilson: Whatever this is, share it with your children or others in your family but only after asking if you can share. Remember – no one likes to be told what to do. But if you share with the intention of helping someone else avoid a mistake you made or a tough lesson you had to learn, the information may go further. Think of all that the person you care for might be experiencing and talk about what can be learned from the situation.
0:31:59:04 Pamela D Wilson: There are some people who believe that everything happens for a reason. That there are no accidents in life. That everything is out of our control. If this is a belief, continually ask yourself what you are learning and how you can benefit from the experiences and the knowledge you gain. Up next, Dr. Donna Benton from the University of Southern California and the California Caregiver Resource center joins us to talk about caregiver support programs available in the state of California that can serve as models for other states.
0:32:37:06 Pamela D Wilson: We’re off to a break. If you are looking for help navigating the healthcare system, decision-making about care for elderly parents, family relationships, or making a care plan for yourself, I can help. Visit my website and schedule an eldercare consultation. Click on How I Help, next Family Caregivers, and next Eldercare Consultation. This is Pamela D Wilson on The Caring Generation. Stay with me. I’ll be right back.
0:33:29:01 Pamela D Wilson: This is Pamela D Wilson, caregiving expert, advocate, and speaker. Thank you to listeners who follow and communicate with me on social media – Facebook, Twitter, Instagram, Linked In, and YouTube. The questions you ask and the experiences you offer result in topics for this podcast, videos, and other articles I create for you.
0:33:49:70 Pamela D Wilson: Are there days when you wish you had someone to talk to? Someone to reaffirm that you are doing the right things? Experts who offer insights you might not have considered or others who have valuable information that provide peace of mind are right here. You’re in the right place with me and all of the listeners and experts on The Caring Generation. I’d like you to meet our guest for today, Dr. Donna Benton.
0:34:18:19 Pamela D Wilson: Dr. Benton thank you so much for joining me.
0:34:20:41 Dr. Donna Benton: Thank you for inviting me.
0:34:23:77 Pamela D Wilson: So I want our listeners to hear how a small number of individuals can make a difference. Can you share how the organization was started in 1976 in San Francisco?
0:34:34:65 Dr. Donna Benton: Sure, two women whose husbands had, one had I think one had a stroke the other was early-stage Alzheimer’s and they were having difficulty because anytime they called for help, they could probably find some help for their husbands. But they were also feeling like they would like someone to talk to. They needed to kind of have some kind of guidance about what was going on with their husband’s needs. They wanted to know—they had different questions—and they weren’t able to seem to find all of these answers in one place.
0:35:20:97 Dr. Donna Benton: So they went to their local legislators and said, “hey, is there a way that we can pilot or try out having a central place to call for resources?” And that’s how it started. The, it was so successful, you know having somewhere somebody could call. They could find a support group. They could get information. They could be linked to resources. That it expanded from the initial pilot after one year into what then became eleven centers after three years that cover California from tip to tip.
0:35:58:18 Pamela D Wilson: I think a lot of states would be interested in hearing more about this pilot project. I know that when I did the research, there was an assemblyman named Art Agnos who helped kind of push this forward. Can you explain to people who don’t know what a pilot project is, what it is and what the purpose is, and kind of how this worked?
0:36:16:81 Dr. Donna Benton: Sure, so a pilot. It’s kind of like where you test out something before and you figure out what are the gaps, what are the bugs before you roll it out very large. So in a pilot, you evaluate. In this case, did we get any calls? Were people satisfied with the answers in this very small area. You know you start in a small area. California is so big and diverse you can’t just throw one model out there and say, “hey is that going to work?”
0:36:53:50 Dr. Donna Benton: What worked and what didn’t with this small group of people that you start with? And so that’s how we, that’s how it started because of the pilot. And I think, what services were requested. You gather a lot of information. You know, when you get a survey, and somebody asks you a whole bunch of questions. Like, do you like this, don’t you like this? On a scale of 1 to 10, how is this? And maybe the next you find out, “oh wow, now it’s offered next door.” And it’s offered some other place. So that’s kind of what happened. If you think of like how any chain restaurant. They start it maybe very small, and then they got their formula together, and rolled it out everywhere.
0:37:39:35 Pamela D Wilson: That makes sense. The legislation dates back to 1984, so this has been around for a while. When they started the pilot, and it moved forward, kind of like you say, people say, “well, I’m interested in this, interested in that.” Can you talk about like what services the resource center offers in California?
0:37:57:63 Dr. Donna Benton: Certainly, yes. And that’s really good to know because we like to think of it as, I like to think of it as well, an old-fashioned shopping center. So that you have a menu of core services that we feel that everyone needs. Which is information, some training. You need respite. You need overall maybe someone to help guide you, which is what we call our case management services or a family consultant. And you need, generally people need something around legal services.
0:38:36:06 Dr. Donna Benton: But all of this needs to because every caring family is different, but we found that most of them will need all of this during your care journey. So you always start with an assessment. And that’s the really key. What’s an assessment? That’s the time we take to talk with you and ask you the same questions. Everybody gets the same questions. Questions about who are you caring for? Who is your support system? How is your health?
0:39:09:00 Dr. Donna Benton: Remember because this is for the caregiver. We are asking about their health. And then the health of the person that they’re caring for. What kind of legal information are you aware of? What do you know in terms of the disease? And so, it’s very standard questions. How are you feeling? Do you have contact with other caregivers? Do you get enough time for yourself, and how much time are you working? Are you retired?
0:39:36:62 Dr. Donna Benton: So, there’s a whole slew of questions that we ask, and that’s called an assessment. But we ask everyone the same questions because whether or not—right now, you may say no to a question, but in a year or so, you may need to have the information later. So, we want to make sure that everybody has an equal access to all of the different services and get asked the same questions.
0:40:01:99 Dr. Donna Benton: So we start with an assessment that really helps personalize you. And it makes it very individual in terms of what we then later do, which is called a care plan. And so, the care plan is really, that’s really what is decided between the family consultant and the family caregiver. What steps do they want to take to help during their caregiving experience? And we stay with you the entire time that you’re caring. But that doesn’t mean that you’re calling every day.
0:40:32:10 Dr. Donna Benton: You may say, “okay, right now I just need to get legal things together.” And then you might not call again for six months.” Or we’ll call you in six months and say, how is it going? Are the legal things set up? Anything new? Any change in behavior? Maybe changes in diet? Are you able to take breaks? Have you been to the doctor? That was one of the things you said you were going to do is go to the doctor Did you get your check-up yet? And so, we just keep stay with you as things change over your caregiving experience. Because it’s usually many, many years that people are caregiving.
0:41:04:26 Pamela D Wilson: And that’s a good point. So, the term caregiver can be pretty broad. There’s caregivers for—parents are caregivers for their children. And then you have older parents and other people. So, can you kind of explain the background of the people? Is it mostly people caring for older people, or is there a mix of parents raising children? Who comes to these centers?
0:41:24:40 Dr. Donna Benton: So, when I use the word caregiver, we’re talking about family. And so, it’s adult children who are caring for a parent. You might be caring for your grandparent. You could be caring for a spouse. It could be a sibling. But for us, it’s the unpaid. You are usually not doing this for pay, and it’s what we do for each other as family or friends.
0:41:52:80 Dr. Donna Benton: So, you could even be somebody, a neighbor who is next door to somebody who you’ve become very close with, and you are providing that day-to-day concern and care. It doesn’t mean that you’re doing, you don’t have to necessarily be doing the physical care. But I always say that you start emotionally with that attachment for wanting to care and make sure that somebody is getting a good quality of life. That they’re safe and that you’ve been checking in on them. And then that’s the beginning of your care journey.
0:42:23:69 Pamela D Wilson: And you mentioned to me earlier that California has eleven resource centers. Can you explain which governmental offices combined to create all of these centers? I read about that in one of the documents.
0:42:36:96 Dr. Donna Benton: We’re all funded under the California Department of Healthcare Services. And so, we’re under one, the Department of Healthcare Services. And then, the eleven centers are funded through tax dollars. But we also have other funding besides tax dollars. Many have other grants and private donations or a combination. But we’re all independent 501c3s. And we may have other sponsoring agencies. But all of the centers are through your tax dollars at work.
0:43:14:87 Pamela D Wilson: You have a group that’s working to—they’ve created this fabulous website about a year and a half ago. What was the vision in creating that to help the caregivers in California?
0:43:27:24 Dr. Donna Benton: We really wanted it to be a little easier. So, because the word caregiver is starting—people are beginning to notice the word caregiver. But also, sometimes we forget that we are family caregivers. And we wanted one place where you could go and easily find out who is your neighborhood caregiver resource center.
0:43:47:17 Dr. Donna Benton: Because caregivers aren’t going to—they don’t have time to go from office to office. And all of our centers work either phone or online. So, we used to do home visits pre COVID. But we always came to you in wherever you are in the community. We cover the entire state of California. So even though a center may be located at a particular location, the work is actually done virtually or on the phone.
0:44:19:63 Pamela D Wilson: And because of COVID, I know that a lot of people work virtually now. Has that made it easier for people who don’t necessarily have to drive to an office? They can just get on the phone or Zoom?
0:44:31:25 Dr. Donna Benton: They never had to get on the phone, to begin with, and so yes, it has made it easier because more people are understanding how to go online. Or having to use online because you know, we’re doing that more. But now you can see your family consultant. Maybe before you were talking to them on the phone regularly and how we have HIPPA compliant Zoom. So that you can have that private conversation with your family consultant.
0:44:59:62 Pamela D Wilson: I know a lot of states have researched what you have done already. Colorado was one of those such states. So, for states who are looking to model the success of your program, what recommendations would you have for people in those states to get started?
0:45:16:76 Dr. Donna Benton: I would begin with looking at the, we have the California Caregiver Taskforce, which is, we have a website for the California Caregiver Taskforce. And that really has a great compilation of recommendations around how to look at caregiving within your state. There are also national organizations like the National Association of Caregivers, National Caregiver Association, NAC. They have good models, and you can, I think it’s always good to join and advocate together.
0:45:55:50 Dr. Donna Benton: Because not every model will work. So, what we have in California may not work for a smaller state. But at least by looking at what we’ve done. Because we have rural parts of California. We have a lot of cultural and ethnic diversity. We have language diversity. We probably have something that you can learn from us through our model. But also, many states, you can look at some of the larger task force. And there’s probably an advocacy group or a task force in your state. And I would say start there and talk to the advocates that are working in this area.
0:46:33:74 Pamela D Wilson: So for the people that, the caregivers, that have come to these resource centers, what do you think the biggest benefit is to them and their families?
0:46:43:59 Dr. Donna Benton: Well, this is what we hear back. Is people don’t feel alone. They feel that there’s a sense they can call and they can reach anytime, and they have a consistent, vetted source of information. And you don’t have to try to find—you know the Internet is a wonderful place. But there’s a lot of information. And if you can have somebody who is there, holding your hand and cutting through all of the red tape, that’s what they find very valuable.
0:47:13:93 Dr. Donna Benton: Being able to say, “hey can you look this up.” Because you’re already busy and overwhelmed as a caregiver many times. Because you might be working. And you’re doing another twenty hours of care a week. And you have children, and people, and you’re going to school. And so having one place you can trust when you call that you know the information is going to be there and somebody else who can help you through this journey.
0:47:39:18 Pamela D Wilson: Is there anything else that you’d like to add about the program?
0:47:42:61 Dr. Donna Benton: Well, of course I always like to say you should go to our website, and I always say Google Caregiver California. Caregivers California, and that’s our family caregiver centers. You can always call any one center. You can call our number, which is 800-540-4442, and we can get you to your local center. And don’t feel like you are alone. But recognize that you are a caregiver and you are a wife. You’re a caregiver, and you’re an adult child. But the role of caregiving is just very, very unrecognized by even caregivers themselves, but you don’t have to be alone. And it’s very important to reach out for help and information.
0:48:32:44 Pamela D Wilson: Dr. Benton, I thank you so much for joining me.
0:48:35:65 Dr. Donna Benton: I really appreciate you taking the time to let us get some information out here.
0:48:41:38 Pamela D Wilson: The Caring Generation podcasts are available worldwide on your favorite music and podcast apps. Listen and follow the program every week for proven, reliable tips, information, resources, and research about caregiving, aging, health, and everything in between. Add the podcast app to the cellphones and computers of family members, aging parents, and coworkers so they can listen. We’re off to a break. I’m Pamela D Wison on The Caring Generation. Stay with me; I’ll be right back.
0:49:38:95 Pamela D Wilson: This is Pamela D Wilson on The Caring Generation. Does your group or organization have an interest in education about caregiving, health, navigating the healthcare system, legal issues, and more? If so, visit my website pameladwilson.com and click on the speaking tab to learn more about virtual or on-site speaking events and unique education programs that I create for the needs of each audience.
0:50:05:85 Pamela D Wilson: How Do I Accept My Life Choices as a Caregiver? Let’s talk about change and not being an excuse maker. You can accept your care situation and find the best way to manage through it while preserving your wellbeing. Or you can accept the care situation and take steps to change. Regardless of the path you choose, stop being an excuse maker. Don’t get into the habit of allowing excuses to clog up your life.
0:50:42:33 Pamela D Wilson: There is no perfect time to do anything. What are you waiting for? People can wait away their lives. Hoping for someone or something to change or happen. What happens is that you lose present opportunities to make each day the best it can be. When was your last good day? Do you remember why it was good? Did you accomplish something or feel like you had one or more wins?
0:51:12:86 Pamela D Wilson: If you can’t remember, a good day, you may be drowning in habits that don’t serve you. Here’s a simple example. You are tired all the time. You think about exercising, but you’re too tired. Exercise gets the heart pumping, clears the mind, helps you sleep better, and gives you more energy. But if you’re down in the dumps, you may not be motivated to do anything about the situation. I know many caregivers in this place.
0:51:43:78 Pamela D Wilson: Week after week, month after month, it’s the same situation. The caregiver and an aging parent being in a relationship, maybe living in the same household being critical of each other. That’s a toxic situation that does no good for either person. In fact, it’s probably taking weeks and months off your life. When you make the choice to not allow the behaviors, tantrums, and expectations of others to affect your life, you can be happy in the midst of very unhappy people.
0:52:22:20 Pamela D Wilson: How do you do that? You choose to be happy and start doing things that make you happy. Stop comparing your life to other people. I know I may be making this sound like it’s easy. Depending on your situation, it may be hard. You can do it if you really want. All of what we are talking about here is habit-changing behaviors. We all become comfortable with life and there’s nothing wrong with that.
0:52:50:14 Pamela D Wilson: But when our habits are unproductive or unhealthy, that’s when they cause problems for us and others. When habits become problems, they can turn into regrets. We talked about regrets that aging parents may have earlier that include missed opportunities, not having a meaningful life, procrastination, poor habits, bad relationships, and more. We can all have regrets. You can avoid regrets by being realistic about the answer to how do I accept my choices as a caregiver.
0:53:26:10 Pamela D Wilson: Own your life. Own your choices. Realize that we all make mistakes and have the opportunity to learn from them. Think of things that you are grateful for every day. This relates to the idea of having a good day and having more good days than bad. You create your day. Spend time improving your communication skills. You will have better relationships.
0:53:54:33 Pamela D Wilson: Identify the thoughts in your brain that drain you or drag you down. Ask yourself why you think, believe, or feel the way that you do. We all have things in our lives that we carry with us. It’s that emotional baggage that weighs us down. Many people find it easy to blame situations or blame other people for their problems. Avoid being a blamer. Avoid being an excuse maker. Instead, become a solution-maker. If you are around negative people, know that they may call you unrealistic or may not want to hear solutions.
0:54:34:15 Pamela D Wilson: That’s okay let the negative people be negative. Become like superman or superwoman with a Kryptonite suit and allow the moods and opinions of others to bounce off you and back to them. If you watch or watched Saturday morning comics or are a fan of the comics, you know that superheroes have specific powers. Caregivers are superheroes. You just may not know it.
0:55:05:41 Pamela D Wilson: The characters at Marvel and DC Comics have made a comeback with comics, movies, television shows, games, and more. Who isn’t familiar with Spider-Man, the Black Widow, Wonder Woman, Batman, The Suicide Squad, The Avengers, Captain America, or Iron Man.? There are times when a little escapism by watching movies or reading books or comics is really good for the caregiving mind. It’s these times when you realize that there is another world out there besides being a caregiver.
0:55:43:52 Pamela D Wilson: Some caregivers hide in the role of being a caregiver because it’s easier to deal with someone else’s problems than their own. How do I accept my life choices as a caregiver means planning and living your life. Not living in your parents’ home and taking care of them while parents financially support you. I realize that the opposite happens, parents move into your home and expect you to financially support them.
0:56:12:08 Pamela D Wilson: Either way, this relationship is not good for any long period of time. As you can see, it can be easy to become entangled in relationships with another person. Entangled relationships can be co-dependent relationships. There are two podcasts that I’ll mention that talk about this type of relationship if you don’t know what it is. Entangled and co-dependent relationships limit the growth of both people.
0:56:43:01 Pamela D Wilson: If you have any relationship that is fed by drama, you might be close to being in a co-dependent relationship or you might know a person who seeks out co-dependent relationships. Co-dependent relationships limit individual freedom. A fear of losing the relationship exists. How do I accept my life choices as a caregiver is to identify if you have co-dependent tendencies and make the decision to change.
0:57:15:85 Pamela D Wilson: Listen to the Podcast How Do I Stop Being a Caretaker for information about the risks of caring too much. Another podcast, When You Can No Longer Care for Elderly Parents, shares tips for managing lopsided caregiving relationships.
0:57:32:45 Pamela D Wilson: To find your path forward, ask yourself, what it is you want from life. What do you feel you’re missing or giving up as the result of a caring relationship. Look at boundary setting and ways to create balance. The most satisfying relationships result from equal amounts of respect, love, commitment, honesty, forgiveness, self-insight, individuality, and compromise. Good relationships don’t show up on our doorsteps. We create them through our habits and behaviors over time.
0:58:13:13 Pamela D Wilson: If you are an aging adult or a caregiver not sure what to do or how to plan for care, or how to get your time and your life back, my website PamelaDWilson.com offers resources for caregivers. Check out my caregiving library, my Caring for Aging Parents blog, listen to all of The Caring Generation podcasts. Read the show transcripts that include links to research by program guests, and check out my online caregiver courses in webinar format – it’s like binge-watching your favorite television show. You can also watch hundreds of videos on my Facebook and YouTube channels
0:58:47:54 Pamela D Wilson: There’s something for everyone at PamelaDWilson.com. This is Pamela D. Wilson, caregiving expert, advocate, and speaker. I look forward to being with you again soon. God bless you all. Love to everyone. Sleep well tonight. Have a fabulous day tomorrow and a great week until we are here together again.
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