How to Stop Being a Caretaker – The Caring Generation®
The Caring Generation® – Episode 115 December 8, 2021 – On this episode, How to Stop Being a Caretaker, caregiving expert Pamela D Wilson talks about ethical dilemmas related to good care, living a good life, and managing health declines. Guest Dr. Robert Lefever discusses the link between caretaking and addictive behaviors.
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How To Stop Being a Caretaker
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.
Are You A Caregiver or a Caretaker?
Watch More Videos About Caregiving and Aging on Pamela’s YouTube Channel
0:00:37:17 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.
0:01:02:65 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, share your idea with me by responding to my social media posts on Facebook, Instagram, Twitter, YouTube, and Linked In.
01:29:72 Pamela D Wilson: Today, we are taking a big picture view of caregiving and caretaking on this program called how to stop being a caretaker. What should everyone know about caregiving if you don’t yet consider yourself to be a caregiver, if you’ve been a caregiver for some time or you are the person who may or does need care there’s a lot to learn. How to stop being a caretaker includes the ethical considerations of responsibilities of the caregiver and the care receiver.
0:02:05:17 Pamela D Wilson: These considerations include the obligations of the caregiver and the care receiver to their own life versus being responsible for the care of another person or expecting another person to care for you. The decisions around healthcare treatment and taking extreme measures. Thoughts around what is the price paid for being old and sick and who should bear this cost? And last—the idea of medical and financial limits on caregiving.
0:02:38:32 Pamela D Wilson: The guest for this program, Dr. Robert Lefever He joins us from the U.K. to talk about the difference between caregiving, caretaking, and addictive helping behaviors. He is a pioneer of modern addiction treatment methods. In the last 26 years, he has worked with patients suffering from various forms of addiction, eating disorders, compulsive behaviors like caretaking, stress, and depression.
0:03:07:32 Pamela D Wilson: He is the author of twenty-three books including Twelve Step Programme to Kick Your Habit and Break Free from Addiction. He founded the PROMIS Recovery and Counselling Centre in the U.K. and has 23 years of experience in running residential and non-residential treatment programs. Today he continues in private practice working with individuals interested in ending addiction and compulsive behaviors.
0:03:36:07 Pamela D Wilson: Let’s begin by talking about the big picture for how to stop being a caretaker by looking at topics that everyone should consider regardless of age or caregiving status. Unless you are very isolated, extremely healthy, or never watch the news you have likely heard of concerns over the high cost of healthcare. This includes medical co-pays, treatment costs, health insurance, Medicare, Medicaid.
0:04:07:37 Pamela D Wilson: Unless you take a specific interest in statistics or research you might not realize what the high cost of healthcare really means. According to the Center on Budget & Policy Priorities—a link to the statistics I’m about to share will be in the show transcript where you can read for yourself. In 2019 so almost 3 years ago 23% of the Federal government budget was attributed to Social Security only. Twenty-five percent to Medicare, Medicaid, the Affordable Care Act, and CHIP, which is the Children’s Health Insurance Program
0:04:50:55 Pamela D Wilson:. Another 8% of the Federal Budget is represented by safety net programs. So for example food stamps, SSI, and other programs for low-income or disabled individuals. Who can do the math? If you add up the numbers for these three programs, how much of the federal government budget is represented? Let’s see 23+25+8 equals 56% of the Federal Budget.
0:05:25:91 Pamela D Wilson: I know, you didn’t expect to receive a lesson in math or economics but this is important to know with all of the spending bills up for a vote. If you are watching the news you know that the government continues to increase spending. You might be familiar with the term CBO, the Congressional Budget Office. Here are a few more statistics that you can read with links in this show transcript.
0:05:51:73 Pamela D Wilson: The federal debt will be double the size of the economy by 2051. Debt as a percentage of gross domestic product was about 128% in 2020. By 2051 it will be between 202 to 260 percent of GDP. By comparison, the percentage of federal debt to GDP was 31% in 1980, and 100% in 2012. If you don’t know what GDP means, here’s a simple explanation. Gross domestic product is the monetary value of goods and services produced within the United States.
0:06:42:20 Pamela D Wilson: I’ll include a link to the Bureau of Economic Analysis (BEA) and the Federal Reserve Bank Economic Data in case you’re interested in learning more about GDP and federal debt and why all consumers should understand the short and long term effects. Because this affects healthcare spending, It affects everything. Hang with me I know this information can be complicated but it’s important to your future as an aging adult and as a caregiver. These are things you must know.
0:07:16:51 Pamela D Wilson: Fifty percent of the Federal budget is committed to healthcare and low-income programs—actually 56%. Worries specific to caregiving and aging include social security, pensions, retirement savings, the costs of care, shortages of healthcare workers, doctors, and many other concerns. These are all valid concerns. Part of what isn’t being addressed is that aging is part of life. Our bodies age and wear out with time. Nothing stops aging but death.
0:07:51:09 Pamela D Wilson: And death is a very uncomfortable topic. The balance in discussing aging and aging programs funded by the government is consumer involvement. There isn’t enough. I was recently asked if society cared about caregivers and my answer was no mainly because of an education gap. Caregivers care about caregivers because they know what’s involved. People who are healthy have no idea what it’s like to be a caregiver or need a caregiver.
0:08:22:94 Pamela D Wilson: Medical providers who have no experience with caregiving are unsympathetic to caregivers and seniors. Society, in general, doesn’t care about caregivers because the media and consumer products companies promote being young forever. Few directly address issues of an aging society. Most people rely on the government to solve the problem. Here’s the question to ask. If the government could solve the problem why haven’t they?
0:08:56:01 Pamela D Wilson: We’ve been talking about the same issues for the past 100 years. Healthcare and low-income programs are at 56% of the federal budget. Continuing to throw money at the aging problem instead of looking at it as an education gap and a prevention gap will have us talking about the same thing 100 years from now. Although many of us living today won’t be here for that conversation.
0:09:21:99 Pamela D Wilson: How to stop being a caretaker? Become an involved, knowledgeable consumer advocate who isn’t swayed by the promise of programs. Investigate programs, investigate legislation and know what’s really at stake. Don’t vote for promises and issues that you haven’t personally investigated. Let’s talk about the tradeoffs that caregivers make that may help you answer another question toward how to stop being a caretaker?
0:09:53:65 Pamela D Wilson: From a caregiver standpoint the questions to ask include: can you afford to care? Are you willing and able to care for another person? What will you have to sacrifice to be that caregiver? Many caregivers sacrifice income, jobs, long-term careers, spend time in caregiving activities instead of time with their young children or a spouse. There are a lot of tradeoffs and many sacrifices that bring about the question of how to stop being a caretaker.
0:10:28:80 Pamela D Wilson: For anyone who needs care there are many questions to ask. How you’re your health problems limit the choices you have in life? Anybody who becomes physically disabled in mid-life may not be able to continue to work. As a result, social security and retirement savings will be lower than someone who works until the age of 65 or older. If a person is single, widowed, or divorced the question of who will care for me is a major issue not to leave to chance.
0:11:02:39 Pamela D Wilson: Isolation, loneliness, being a burden or having to rely on family members to care for you are a concern. Add to this a diagnosis of Alzheimer’s or dementia which takes away mental and physical abilities such that a person doesn’t know who they are and they hope that someone will care for them—but there’s no guarantee. Then we have families living all across the United States. Aging parents want to stay put while children live 2,000 miles away.
0:11:34:15 Pamela D Wilson: Is it really realistic for aging parents to expect children to move back home or take time off work. Get on an airplane and fly 2,000 miles every time some health emergency arises? Aging and health declines are a fact of life that we all must prepare for – not be surprised about. We must take a more practical approach to aging, caregiving, and all of the ethical questions, including what do children owe aging parents and vice versa?
0:12:09:81 Pamela D Wilson: These are critical issues that few families know to talk about until they’re in the thick of a care or health crisis and your back is up against the wall. Don’t put your family or yourself in this situation. More on how to stop being a caretaker after this break. This is Pamela Wilson on The Caring Generation. Pay it forward to help others who may be dealing with health, aging, or caregiving issues by sharing information about this show and my website pameladwilson.com.
0:12:41:18 Pamela D Wilson: 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. You don’t have to do it all alone. I am here to help. Visit my website to schedule a 1:1 telephone or video consultation with me. Click on How I Help and then Eldercare Consultation. This is Pamela D Wilson on the Caring Generation. Stay with me; I’ll be right back.
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0:13:47:23 Pamela D Wilson: This is Pamela D Wilson on the Caring Generation. Tips, articles, videos, this podcast, my book The Caregiving Trap: Solutions for Life’s Unexpected Changes, online webinar courses about becoming a guardian, and things you should know about caring for aging parents or caring for yourself as an aging adult at home are on my website at pameladwilson.com.
0:14:12:56 Pamela D Wilson: How to stop being a caretaker? Let’s talk about the moral obligation that we have to take care of ourselves as a caregiver of a parent or a spouse so that we don’t become the person who needs care. In other podcasts I talk about the importance of self-care, learning about chronic disease and health, attending regular medical care, and all the things you can do so that you don’t pay the price of being old and sick.
0:14:4491 Pamela D Wilson: Our daily habits have a significant impact on whether we will be healthy in mid to later life. These habits begin in our twenties so don’t think that because you are forty and don’t have any health problems that they’re not lurking, they might be. There are over 110 podcasts from The Caring Generation that feature medical experts talking about health issues in addition to my sharing real-life experiences from my 20 years as a care manager, medical and financial power of attorney, trustee, and personal representative of the estate for clients.
0:15:20:86 Pamela D Wilson: Real life stories, experiences, and practical information all at your fingertips. How to stop being a caretaker? If you are the caregiver this means balancing moral obligations to care for a parent versus yourself, your children, your spouse, your career, health, mental, physical, and financial wellbeing. I know—It’s a lot!
0:15:49:05 Pamela D Wilson: For many caregivers, all of this gets very off-balanced. If you are a caregiver for a loved one with dementia or Alzheimer’s, the scales of imbalance tip even more. Individuals with advanced dementia or Alzheimer’s can’t take care of themselves. There is a point where logical conversations are not possible. Where total care and supervision become necessary. If you are a person with an early diagnosis of memory loss don’t be naïve.
0:16:21:29 Pamela D Wilson; Create a plan today for who will care for you, where, and how you’ll pay for your care. This also means creating legal documents: medical and financial power of attorney, living will, a will, or a trust. Do not wait. Memory loss only advances, it doesn’t get better. Take steps to make sure you have someone you trust to care for you so that you are cared for and not neglected when you have no ability to care for yourself.
0:16:51:60 Pamela D Wilson: Caregiving versus caretaking? Where is the balance? All of us want the best care possible but this doesn’t mean that accomplishing good care is easy. When denial or procrastination to make decisions has occurred there may be no good options on the table. In that event the decision is which of the options is the least harmful or the least worst? How many expect that you will ever be in a situation where you are choosing between bad choice number one and bad choice number two?
0:17:27:33 Pamela D Wilson: When caregivers ignore the moral obligation they have to care for themselves and their families all that may remain is choosing between less than ideal options. Here’s an example. A caregiver is angry and resentful about the behaviors of a parent diagnosed with dementia who clearly cannot care for him or herself. The caregiver expressed concerns about how having a parent in the home is scaring their children and ruining their marriage.
0:17:54:96 Pamela D Wilson: In this situation, the question to ask is—who is in control? Clearly not the parent with dementia who needs total care. This parent is at the mercy of the child—the caregiver—who has a moral obligation to make the best decision possible. If having a parent with dementia in the home is harming children or destroying the life of an adult who is the caregiver this is not an equitable situation.
0:18:26:62 Pamela D Wilson: When a caregiver is filled with anger or resentment what is the quality of care provided for a parent with dementia? You might ask. How do these situations happen? How do they get so out of control? Most of the time it’s because a care plan was not discussed with anyone who knows what the future might hold. Most people can’t imagine being sick, or the decisions that might have to be made, or what they would want in a situation they can’t imagine.
0:19:01:69 Pamela D Wilson: It’s not the caregiver’s fault. It’s not the care receiver’s fault. They can’t even imagine when a person disappears into dementia and can’t express any wishes? Limited options—having to make unpleasant decisions arise because we don’t recognize the moral obligation we have to confront the reality of aging, or disability, or sickness while we are healthy or young because no one tells us. Instead, what happens is, crises happen. We push the issue down to our children who have to deal with the issue.
0:19:38:89 Pamela D Wilson: How to stop being a caretaker? This is the ethical question about what children owe parents and what parents owe children. How about consideration, respect, establishing boundaries for no harm or destruction of another person’s life. The lives of family members are linked by birth and death and choices that individuals make every day of life that have short and long-term consequences.
0:20:09:98 Pamela D Wilson: When you’re living in your own world, not considering how the actions you take today might affect your children, grandchildren, a spouse, or other family members you’re not living up to your moral obligations. How to stop being a caregiver. Understand what moral obligations mean. In simple terms, it’s the idea of considering right or wrong, pros or cons, best or worst consequences. Complicating the idea of how to stop being a caretaker are family views about care.
0:20:45:05 Pamela D Wilson: For example, parents are to be revered. Parents are owed a debt of gratitude for the care they provided to their children, or care for parents must be done out of love, duty, or responsibility. How does the idea of “honor one’s parents” compete with the idea of marriage and the vow, “in sickness and until death do us part.” Is it possible that expectations of care by parents violate the idea of reciprocity and mutual respect?
0:21:21:27 Pamela D Wilson: If family relationships with children and parents were filled with power struggles, conflict, emotional abuse when young then is it likely caregiving situations will be filled with more stress, feeling burdened and more exhaustion. At what point do we have a moral obligation to put the well-being of the family above the well-being of the individual who needs care? Should a spouse think about how caring for a husband or wife affects young children or grandchildren?
0:21:40:09 Pamela D Wilson: What about as previously mentioned how aggressive or unusual behaviors of a person with dementia negatively affect young children or grandchildren? What are the effects of caregiving on the spouse or the children of an adult child who is the caregiver? There are many considerations and moral obligations that are rarely discussed or considered. In making decisions about care what are the costs and the benefits?
0:22:25:70 Pamela D Wilson: At what point do the costs and benefits become unbalanced? Life outside of caregiving responsibilities can be challenging. When caregiving relationships begin to affect other relationships in the family—spouses and children who are not the primary caregiver can become angry or resentful. Even with all of this, there are blessings. Think of the ability of modeling positive caregiving behaviors for young children or grandchildren.
0:22:59:40 Pamela D Wilson: Accepting that one illness after another is the body’s way of shutting down and being grateful for the time that you have to prepare for a loved one’s death. Many positive experiences arise from caregiving responsibilities when situations can remain balanced and individuals don’t not take on aspects of caretaking. Up next we will talk about the ethical decisions of making decisions about healthcare and treatments and the differences in how caregivers versus caretakers might approach this subject.
0:23:39:11 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, 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. I’m Pamela D Wilson. Stay with me. I’ll be right back.
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0:24:27:80 Pamela D Wilson: This is Pamela Wilson, caregiving expert, author, and speaker on The Caring Generation. If you are a working caregiver, and your company does not currently offer support, resources, or educational programs for caregivers—it’s time. Share my information with your human resources department and ask them to contact me. I provide on-site and virtual programs for corporations and groups interested in supporting caregivers. More information is on my website at PamelaDWilson.com.
0:21:30:00 Pamela D Wilson: What happens when an aging parent or a spouse faces a decision about surgery or additional medical care? Who makes better decisions, a caregiver or a caretaker? One might say that a caregiver has more balance and objectivity about decision-making than a caretaker who may want to make the decision based on their own needs and not the needs of the care receiver. Let’s look at a person who has dementia.
0:22:24:43 Pamela D Wilson: Caregivers of people with dementia are under a great deal of stress and often respond to the behaviors of the person with memory loss. As a result, the caregiver may feel that “things are being done to them on purpose.” Mom purposely wets the bed. Feces are smeared on the walls of the house. Dad yells in anger or is agitated in the afternoon hours of the day.
0:22:51:08 Pamela D Wilson: Memory loss and many other diseases like Parkinson’s disease, MS, brain injuries take away the mental abilities and the dignity of the person. It’s almost as if the person you see—who used to be the mom or dad you loved—has turned into someone else that you don’t like. How to stop being a caretaker in these situations?
0:26:15:39 Pamela D Wilson: Being overly helpful or overly controlling can increase agitation for persons with memory loss. Skilled caregivers realize that the importance of supporting independence instead of dependence is critical. How to stop being a caretaker? Become more independent yourself and encourage your loved one to do the same as much as possible. The ability to step back and look at the total situation of care is essential because health declines will continue to occur.
0:26:49:69 Pamela D Wilson: We can’t be naïve about that. Even though our lifelong habits contribute to the health diagnosis we experience when older, if we knew years ago what we knew today most of us would turn the clock back and change habits of drinking alcohol, smoking, doing drugs, eating at fast-food restaurants, not exercising, ignoring high blood pressure, high blood sugar, high cholesterol and all of the things that the doctors told us we should have paid attention to—but we didn’t.
0:27:16:21 Pamela D Wilson: But today, it’s too late. It can be difficult to be compassionate with a parent who is living a life that they would not have chosen had they been able to see and understand the consequences of their actions this far down the road. Caregivers, caretakers, view today this as an opportunity to change your future beginning today. The behaviors of parents, who are suffering and don’t feel well, can also reflect their own self-disgust or self-critical thoughts about how their actions put them in this impossible situation where their health is bad and they’re dependent on someone else to care for them.
0:27:56:26 Pamela D Wilson: Let’s look at two scenarios. Your parent falls and breaks a hip. In this situation, the healthcare system has a great deal of control over available treatments depending on the level of physical activity and health of your parent. A parent with dementia who spends the majority of time in bed or in a wheelchair will be treated very differently from a parent who breaks a hip and walks 3 miles a day, every day.
0:28:24:85 Pamela D Wilson: Hip surgery may not be recommended for a parent with dementia due to the effects of anesthesia on the brain, or due to the fact that mobility isn’t affected if a parent already no longer walks. But, the parent who walks 3 miles a day may be rushed into surgery for a full hip replacement and may be up and walking the next day.
0:28:46:49 Pamela D Wilson: Moral questions surrounding treatment or not can be questioned when asking about the benefit of the treatment. Many times these decisions are clouded by a caregiver or a care receiver doing what is most comfortable for them versus what is best for the patient. Many times these decisions are clouded by healthcare professionals, and doctors, and insurance companies. In these situations, a caregiver may be able to present the pros and cons to discuss with a parent.
0:29:20:84 Pamela D Wilson: A caretaker with more controlling behaviors may project their opinions, wishes, and desires on mom or dad. In a sense forcing mom or dad to agree with their position which really may or may not be best for a parent. Let me give you a personal example of this. I was the guardian for a man who had a stroke. Initially, he was on a ventilator and a feeding tube. In time he recovered. He was still wheelchair-bound but was able to have conversations about his life and his wishes.
0:29:48:56 Pamela D Wilson: Over time though he experienced further health declines. He was having more frequent episodes of pneumonia where his lungs filled up with fluid and had to be suctioned. If you’ve ever known someone in this situation, having the lungs suctioned to remove phlegm is hard on the body and it can be traumatic. He was in a nursing home and each time this happened he had to be sent out to the hospital.
0:30:14:92 Pamela D Wilson: The doctor and I eventually discussed that this would become a more frequent event because his body wasn’t able to fight off infections. The discussion we had was about the pros, cons, benefits, and comfort to Dale’s life. If I was thinking only of myself I may have said, let’s go on with this for a few more months to give Dale more time. But in reality, giving Dale more time wasn’t the issue.
0:30:42:52 Pamela D Wilson: More time didn’t mean that his life or his health would get better. It was only going to get worse. So after thinking about the decision for 2 days, I decided to place Dale on hospice care so that he would be comfortable. There would be no more trips to the emergency room. No more suctioning of his lungs, no more treatment that might make me feel better, like I was doing something good but that would not benefit Dale.
0:31:12:25 Pamela D Wilson: Dale passed away peacefully in about a week’s time. The decision to pursue life-extending treatment may not always be in the best interest of care receivers if the treatment causes more harm or adds more physical or emotional trauma. Grieving the loss of a loved one in advance can be challenging. The decision to end life should never be taken lightly. However, if a person was able to execute a living will and express
0:31:41:94 Pamela D Wilson: wishes long before disease took away mental abilities to express wishes, then the caregiver or the caretaker can have peace of mind to know that the decision of a loved one is being followed rather than denied. How to stop being a caretaker is to recognize that the person you care for was once able to make their own decisions and was clear in their directions about how they would want or would not want to live their life. Every caregiving situation’s needs, resources, and abilities are different.
0:32:15:16 Pamela D Wilson: Being realistic about medical and financial limits is another part of being a caregiver and how to stop being a caretaker. All of us, at some point, will be faced by the physical limitations of our bodies and minds to function and the amount of money in our bank accounts. Like aging, this is another reality of life that we may not want to talk about when we’re young. But it becomes increasingly important with age. We’ll talk more about this in the last segment of the program.
0:32:45:40 Pamela D Wilson: Up next, we’ll focus on caregiving versus caretaking and the idea of being a compulsive caretaker. How caretaking affects relationships between the caregiver and the care receiver is important to know. Dr. Robert Lefever joins us. I thank you for following and communicating with me on social media – Facebook, Twitter, Instagram, Linked In, and YouTube, where I have hundreds of videos. The questions you ask and the experiences you offer result in topics for this podcast, videos, and other articles I create for you.
0:33:18:39 Pamela D Wilson: Our communication is a two-way street. If you’re not active on social media, visit my website PamelaDWilson. com where you can complete the caregiver survey to offer your thoughts, suggestions, and information. Click on the Contact Me Button on the right and then Caregiver Survey. I’m Pamela D Wilson on The Caring Generation, Stay with me I’ll be right back with Dr. Robert Lefever.
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0:34:11:46 Pamela D Wilson: This is Pamela D Wilson, caregiving expert, advocate, and speaker. Are there days when you wish you had someone to talk to? Someone to reaffirm that you are doing the right things? You’re in the right place with me and all of the listeners on The Caring Generation. I’d like you to meet Dr. Robert Lefever, a pioneer of modern addiction treatment methods in the U.K. who is known worldwide. In the last 26 years he has worked with patients suffering from various forms of addiction, eating disorders, compulsive behaviors like caretaking, stress, and depression.
0:34:49:68 Pamela D Wilson; Dr. Lefever welcome to the show.
0:34:52:3) Dr. Robert Lefever: Thank you.
0:32:30:00 Pamela D Wilson: So can you talk about what is compulsive helping?
0:34:59:07 Dr. Robert Lefever: Ah, now that’s the big question, isn’t it? Because there’s a very great difference between helping, which is a lovely thing, and compulsive helping. Which is a compulsive behavior like any form of addictive behavior. It goes too far. So what happens is that it becomes patronizing and belittling. We do too much for people. We think that they need, need, need our help. And we’ve got to give it, got to give it, got to give it. That is a compulsive behavior.
0:35:32:92 Dr. Robert Lefever: And the drugs are caretaking and self-denial that exactly matches the drugs of an active addict, which are blame and self-pity. And addicts are full of blame. We blame absolutely everything we can for our behavior. And we’re so sad about ourselves. You can see this in news stories today. So the blame and self-pity of addicts is exactly matched by the caretaking that’s going too far and self-denial—not doing enough for oneself for people who are compulsive helpers.
0:36:12:59 Pamela D Wilson: And so how can caretaking, and sometimes we call it caregiving, be viewed as self-destructive or harmful to others. So let’s say we’re caring for a parent or a spouse. How can that be viewed as harmful?
0:36:27:52 Dr. Robert Lefever: Well, I work in the professional field of looking after people with addictions and with compulsive helping and what I find is that to help people with an addiction, the first thing I need is to peel off their compulsive helpers. Because a compulsive helper keeps it all going. They find the excuses. They find the rationalizations. They soothe down the girlfriends, or the teachers, or the other people involved. So they pick up all of the consequences of the addictive behavior and try to make it less.
0:37:05:73 Dr. Robert Lefever: Well, this is actually the worst thing you can do for an addict. They need to face their own consequences as I had to do, and I got into recovery at the age of 47. So I caused a lot of damage by that time and through my various addictive behaviors. And I had to be confronted and to face up to the reality that I am an addict by nature. It runs in my family. All the Lefever family have addiction problems except my niece, Anna. I’m very concerned about her. She doesn’t seem to have anything at all. She’s just lovely.
0:37:41:33 Dr. Robert Lefever: But so two of my grandparents died of alcoholism. My mother had an eating disorder, my father was a compulsive helper from heaven or hell—whichever you like. My children have had various challenging times and so on. In our family, we make a specialty of our addictive behavior, and other people are good at other things. But we’re brilliant at addiction. We’re very skilled. So I’ve had to learn to leave that skill and try to develop skills in recovery and towards helping people to be loving, and caring, and supportive rather than compulsively helping.
0:38:23:94 Pamela D Wilson Thank you so much for sharing that story about your family. that leads into my next question. So, there’s cultures out there that believe kind of in the good of the group versus the good of the individual. But what happens is kind of what you described to a point where people in the family want to be rescued. So it almost creates this compulsive caregiver on the other side where one person becomes that caregiver, and they sacrifice everything, and eventually, they need a caregiver. So how do we talk about this in families that rescuing is not good and compulsive caretaking is not good?
0:39:01:85 Dr. Robert Lefever: Well, there’s a further issue here which is that caretaking has become institutionalized in our societies. It’s expected that we shall care, and care and care. Oh, it’s wonderful. I remember a nurse being awarded a prize for doing thirty hours of helping on top of her full-time job. Well that wasn’t very constructive. She’s have been exhausted. She’d have been resentful. She needed treatment she didn’t need a prize.
0:39:38:81 Dr. Robert Lefever: So I put up a post on Facebook every day, and the one I put up yesterday was on inner emptiness and loneliness. Now, these are two different things. A sense of inner emptiness is a partial considerable void in place of a lively human spirit that brings trust and honor that are beautiful things may be genetically inherited. There’s a defect in neurotransmitters in the mood sensors of the brain in people like me who have an addictive nature.
0:40:09:85 Dr. Robert Lefever: And addicts of any kind use mood-altering substances and processes in order to modify the way we feel. We’re reluctant to discontinue this use because we go back to the previous state of inner emptiness, and the only positive creative alternative I know is to work the 12-step program on a daily basis. Taking anti-depressants could result in addiction to prescription drugs. This would be easy to justify but very difficult to stop. And I don’t want my broad palate of emotional color to be muddied by the pharmaceutical industry.
0:40:43:97 Dr. Robert Lefever: But loneliness is something anyone can experience. Loneliness comes from a lack of sustaining company. When someone has no family support or friends to contact, as often happens in the elderly and in people who have a mental illness, loneliness can be clinically significant, desperate. Active addicts tend to change our friends when we become hooked into our particular addictive outlets. We seek out people who understand us. Which tends to mean do what we do. Inevitably these relationships are very fragile, and they fall apart when we try to give up our compulsive behavior.
0:41:22:98 Dr. Robert Lefever: But by that time, we may have lost our previous friends. They got fed up with being let down repeatedly. A sense of deep loneliness compounding the initial inner emptiness is then inevitable. And building new relationships, often initially from miscellaneous relationships, is a solution that’s worked for me for now for 37 years despite some very difficult times. A decade ago, I collapsed, and now I’m having the life of my very colorful dreams.
0:41:53:63 Pamela D Wilson: You mentioned that story about that nurse who got an award for working another 30 hours. Caretakers seem to have this need to be needed or to help. What are they looking for from relationships?
0:42:07:48 Dr. Robert Lefever: I think that’s exactly right. The caretaker needs to be needed. Whereas the addict needs to be fixed. The addict wants something out there to fix the sense of inner emptiness in here. Whereas a compulsive helper with a need to be needed wants to give, give, give perhaps in a sense to get needed by somebody and that’s their fix. So we each have equal and opposite fixes. And so compulsive helpers and addicts go looking for each other, and we find them.
0:42:38:92 Dr. Robert Lefever: I know perfectly well that my wife, Meg, who died ten years ago. You know she was a compulsive helper par excellence. She would find addicts from anywhere and do whatever she possibly could to help them. And she found me. Which was bad news at the time she met me, first of all. When I was 21, and she was 18. I was in my active addiction, and she did anything she could to help me. Which, of course, meant that in fact, I took advantage of her. I did allow her to help me and asked her to help me. I depended on her helping me and so on.
0:43:21:51 Dr. Robert Lefever. When I married again, when I married Pat, ten years ago, I had to explain to her that as an addict, I really don’t want her help. And she would say, “but oh, I’m just trying to help,” and I said, “yes, but it’s not good for me.” And she fully understands that now so that she makes me do the things that I need to do for myself.
0:43:43:52 Pamela D Wilson: That is such a good point because I hear a lot of caretakers say, “well, if I don’t do this for mom, or dad or a spouse, who will?” But yet to your point, that person who needs care is almost—I don’t want to say compelling the person to do things—unless they say, no I want to be independent. So how do we help the people we care for—say that they want to be more independent and don’t want our help?
0:44:11:06 Dr. Robert Lefever: It’s often true when people say, well, if I don’t help, who will? This is why compulsive helpers are also such wonderful people. But they go too far. So when people say, well, if I don’t help, who will? That can be true. But then we have to look at what help are we giving?
0:44:33:73 Dr. Robert Lefever: Are we giving help that the person could have provided for himself or herself? Because if that’s what’s happening, then we are enabling. We’re allowing that person to avoid taking responsibility and going on doing whatever they want to do, knowing perfectly well that we will pick up the tab. Whether it’s a financial tab or a social tab or a health tab, or whatever. We can be guaranteed as compulsive helpers to pick up the tab.
0:45:02:55 Dr. Robert Lefever: Now I don’t do that nowadays. But in my relationship with my son Robin, it’s the other way around. I was the compulsive helper to his addiction. I’ve done some very stupid things. You know. He knows that I tell this story, and he’s happy with that. I have spent thousands of pounds on cocaine, but I’ve never used it once. What I did was to pay off his overdrafts, his bank loans.
0:45:32:97 Dr. Robert Lefever: The bank manager would call me and say, “Robin’s in trouble.” And I would say, “oh gosh, how much now – oh gosh that much? Well, transfer it across from my account.” And I had no idea where all that money was going. It was actually going up his nose. He was a fully active cocaine addict. Now he runs his own rehab, and he’s fully abstinent, so that’s why he’s happy for me to tell the story. But at the time, I spent thousands of pounds on cocaine, and yet I never used it once.
0:46:05:55 Pamela D Wilson: So these enabling behaviors can—it seems like they can become quite a habit. And I know you mentioned earlier this 12 step program. So if one realizes that they’re in this situation and they’re not sure where to start or where to go, how does one start to look at these caretaking behaviors and then eventually stop them.
0:46:25:45 Dr. Robert Lefever: Well, initially, we have to become aware of them. And that’s as difficult for compulsive helpers as it is for addicts. Step one of the 12-step program, as you may be aware, is acknowledging that we’re addicts and that our lives have become unmanageable. But that’s a very, very difficult step. “Acknowledging that I’m an addict, absolutely not. You know I use occasionally. I’ve been a bit silly at times, but I’m not an addict. You know, I’m a sensible drinker. I just smoke thirty cigarettes a day. I don’t lose too much on my gambling, and so on and so on.”
0:47:06:75 Dr. Robert Lefever: We’ve got justifications and rationalizations. So step one is very difficult. And then step two coming to believe that a higher power than self could restore me to sanity. “I’m not insane, for heaven’s sake. I’m perfectly rational.” But when you look at my behavior, there’s no other word for it. I’m insane. And people who have difficulty with step two, you know, coming to ace[t that we need a higher power than self, haven’t done step one sufficiently well.
0:47:35:91 Dr. Robert Lefever: If we really are powerless. If we find that our history as it goes on and on and on and we get damage in every aspect of our life, that is step one. And if we don’t acknowledge we need a higher power in step two, we need to go back and have another look at step one. So working the 12 step program is the hardest thing I’ve ever done in my life.
0:47:59:01 Pamela D Wilson: Let me ask you one more question. So let’s say that two people are in this relationship—whether you are the addict or the helper. And one realizes they need to change, but the other one is not there. [chuckle] How does that dynamic work when one person says, “well, I’m not going to help you anymore,” or as the addict, “I realize I need you to stop helping me.” What happens when one person realizes they want to move forward and the other one doesn’t?
0:48:21:56 Dr. Robert Lefever: Well, that may spell the end of the relationship—if it’s a dependency relationship. You see, dependency can lead to an entitlement. And we may feel we need something. We need it, we need it, we need it, and I want it, I want it, and then I must have it. And you have to provide it. Well, that’s a cascade that is very destructive. And so what we need to do in those relationships, this is part of the work I do when I’m doing my counseling work is to help people to move on from those dependency relationships. And develop individual relationships with themselves, first of all. And then with each other.
0:49:04:32 Pamela D Wilson: Ah, Dr. Lefever. The information you provided is amazing, I thank you so much for your time for this interview.
0:49:11:36 Dr. Robert Lefever: It’s my privilege. Thank you very much for asking me.
0:49:14:91 Pamela D Wilson: Lots of great advice to answer the question how to stop being a caretaker from Dr. Robert Lefever. You can find a link to his website and his contact information in the transcript for this show on my website. Go to pameladwilson.com, click on the Media Tab and then the Caring Generation to see this show and over 110 episodes of The Caring Generation.
0:49:37:58 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. We’re off to a break. I’m Pamela D Wison on The Caring Generation. Stay with me; I’ll be right back.
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0:50:34:11 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.
0:50:59:73 Pamela D Wilson: Let’s continue our conversation about how to stop being a caretaker by recognizing the middle ground between medical and financial limits. If you listened to the interview with Dr. Robert Lefever, you heard him share his story about pouring thousands of pounds into rescuing his son from a cocaine habit. In this case, his son had the ability to choose to continue using and stop being rescued by dad or get himself further into a rut.
0:51:32:95 Pamela D Wilson: In this case, his father’s decision to end caretaking behavior turned out for the best and Robin is a recovering addict today. While ending caretaking doesn’t always turn out this way there comes a time in many areas of life and caregiving situations where we want to evaluate the benefits of ongoing medical care and treatment and weigh financial costs for the caregiver and the care receiver.
0:52:00:03 Pamela D Wilson: Many decisions in life are driven by fear of the unknown. What if we make a change and it doesn’t work out? Caregivers will continue to give and give and give and then become caretakers because holding on to their identity as a helpful or caring person is more important than self-care or their concern about destroying their life, health, and relationships. This sounds a bit crazy, right? For some people, the idea of self-care translates to selfishness. But in the long run, does it really?
0:52:37:78 Pamela D Wilson: Does a lack of self-care perpetuate the idea of becoming entrenched in our behaviors and expecting our children or someone else in our family to rescue us by becoming our caretaker. There are times when we have to flip caregiving situations upside down and backward to look at these habits and caregiving patterns realistically. When we choose not to see the importance of self-care we are choosing to place ourselves and our families at a future economic disadvantage.
0:53:33:81 Pamela D Wilson: We’ve talked about how expensive care is. How healthcare costs continue to rise. This isn’t going to change in the foreseeable future until we as consumers become the change. What are you willing to do? Caregivers muddle through caregiving situations, fail to become educated, or struggle to learn the skills they need to provide good care.
0:53:39:07 Pamela D Wilson: Why not be willing to spend some of your money on taking a caregiving course or counseling to learn the things you don’t know that you should be planning for. This small expense can save thousands of dollars in future care if you choose to create a plan to help you make decisions about things you can’t imagine today that can happen in the future. Rather than experiencing years of heartache or suffering, choose to talk about caregiving in your family before a caregiving crisis arises.
0:54:10:16 Pamela D Wilson: Let’s talk about medical costs in light of ordinary and extraordinary care. We briefly touched on this when we discussed hip surgery for an active elderly adult versus a parent with dementia. One aspect that I want you to think about is that there are times when you as the caregiver or the caretaker have to be the mind and the voice of reason. The healthcare system makes a lot of money off tests, procedures, and surgery.
0:54:39:95 Pamela D Wilson: In the twenty years that I’ve been involved in helping families make care decisions and in making legal decisions for my clients I’ve experienced doctors and surgeons making recommendations that made no sense for my clients. Take all recommendations to heart, investigate, seek additional information and make the best choice you can.
0:55:03:89 Pamela D Wilson: Let me share a real-life example from my experience with a client. Let’s call him John had longstanding heart disease. He saw his cardiologist regularly and over time his health continued to decline as it would for anyone in his situation. A pacemaker was investigated and based on the cardiologist’s assessment, putting in a pacemaker would not stop the inevitable due to the condition of John’s heart being so weak. So we didn’t pursue a pacemaker as an option.
0:55:33:71 Pamela D Wilson: John also had dementia that was advancing so that there was a risk for surgery and anesthesia making his dementia worse. He had breathing problems. Additionally, the efforts to complete the follow-up care after having a pacemaker implanted were impractical. John lived in a memory care community. This would require repeat follow-up visits at the cardiologist’s office.
0:55:57:4) Pamela D Wilson: He was wheelchair-bound, he would require special transport and someone to accompany him. It was decided that the medical costs and potential health risks, plus the financial costs of putting in a pacemaker that wouldn’t extend John’s life. It didn’t make sense. One morning John was found non-responsive in bed by care staff in the memory care community and he was sent to the emergency room.
0:56:20:90 Pamela D Wilson: The doctors there, much to my surprise recommended a pacemaker. I sent them the prior cardiologists’ recommendations, his medical records, his medical history. But, yet the doctors were adamant about going forward with the pacemaker. I was John’s guardian and even though I had absolute legal decision-making power, the doctors wanted to fight me because there is a different standard for medical capacity versus legal capacity and there wasn’t enough time to schedule a court hearing and go through all of that.
0:56:56:59 Pamela D Wilson: So the hospital surgeons did what they did. They made a lot of money on an expensive pacemaker surgery for John. John returned to the memory care community and about one week later he was found non-responsive again in bed. I didn’t send him back to the emergency room. I placed him on hospice and he died within 24 hours.
0:57:19:83 Pamela D Wilson: In this case, the hospital was more interested in money than treating John with dignity and allowing him to pass away on his own without having to go through invasive surgery that had no benefit to him. There are times when you as caregivers or caretakers will have to make difficult medical decisions and stand up to hospital staff and surgeons. There are times when you will win and there are times when you will lose.
0:57:46:25 Pamela D Wilson: There are times when medical personnel will agree with your legal authority or question it. Be as prepared as possible for the fight of your life. Knowing what your loved ones’ wishes are so that you can make the best decisions in light of all of the moral obligations that you face. Every situation is different. All we can do is take caregiving a day at a time. Seek as much education as possible and plan ahead as much as possible.
0:58:15:59 Pamela D Wilson: 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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