My Mother Refuses to Take Care of Herself – The Caring Generation®
The Caring Generation® – Episode 89 June 9, 2021. On this caregiver program, expert Pamela D Wilson offers insights for caregivers who say My Mother Refuses to take Care of Herself. Is mom refusing care or is there something else going on? An interview with Dr. James Coyne shares insights into happiness, reality, and responses to life-threatening diseases.
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My Mother Refuses to Take Care of Herself
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.
Caregiving: What to Do When Loved Ones Refuse Care
Watch More Videos About Caregiving and Aging on Pamela’s YouTube Channel
0:00:37:14 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.
0:1:05:95 Pamela D Wilson: You’re in exactly the right place to share stories, learn tips 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 each week. This week our conversation is about the topic—my mother refuses to take care of herself. We will talk about different perceptions about caring for oneself.
01:34:32 Pamela D Wilson: How attitudes can be affected by the personal beliefs and experiences of grandparents, parents, spouses, and caregivers. Additionally, how saying my mother refuses to take care of herself can translate to the idea of a caregiver telling a parent or a spouse what to do—and why telling others what to do may not work out as we expect. We’ll also talk about roles in family relationships that can contribute to why my mother refuses to take care of herself.
02:13:55 Pamela D Wilson: As you can see, this is a complex subject. The guest for this program is Dr. James Coyne. Dr. Coyne is Emeritus Professor of Psychology in Psychiatry, of the Perelman School of Medicine at the University of Pennsylvania where he was also Director of Behavioral Oncology, at the Abramanson Cancer Center and Senior Fellow Leonard Davis Institute of Health Economics. [chuckle] That is a tongue twister.
02:46:00 Pamela D Wilson: His blog, Coyle of the Realm: Mind the Brain features the article A Skeptical Look at “Happiness Doesn’t Follow Success: It’s the Other Way Round.” I will post a link in the show transcript to this blog. I had the pleasure of interviewing Dr. Coyne years ago when the Caring Generation first aired and want to share this archived interview again because it lends insight into how people deal with serious health diagnoses like cancer, and may not choose to pursue extensive treatment—thus being perceived as refusing care.
03:28:89 Pamela D Wilson: Dr. Coyne also shares information about two celebrities who died of cancer and who chose to publicly and bravely fight the disease.
Let’s begin with reversing the topic of my mother refuses to take care of herself and look at how caregivers and family relationships, plus culture might contribute to this concern. How many of you have refused to do something? How many of you are comfortable saying no or receiving a no when you make a request?
04:08:34 Pamela D Wilson: The idea of refusals is an uncomfortable topic for two people in a relationship. Some refusals stem from ethical or character beliefs like someone saying “I refuse to lie” or “I refuse to respond in kind.” Meaning being unkind to a person who is unkind to you. Other types of refusals relate to saying no to a request. It’s possible to learn refusal skills that make others less resistant or upset about the refusal.
04:45:68 Pamela D Wilson: Refusal skills are response patterns used to say “no” when one feels pressured to do something. Here’s an example of a refusal response. Say no. Be honest about why you are saying no. Thank the person for asking or trying to persuade you to do something. You can leave the response as a no. Or if there is a middle ground or potential compromise, you can say no, and make a different offer.
05:18:34 Pamela D Wilson: What are your memories of being young and pressured by your friends in grade school or high school to do something you felt uncomfortable doing? What are memories of your parents telling you to do something—related to the values or culture or beliefs of your family—and you had different thoughts? These differences of opinion are reversed when we, as adult children or spouses, become caregivers for a parent, husband, or wife.
05:54:13 Pamela D Wilson: Caregiving relationships can be pressure-filled with a desire to do the “right” thing even when the “right” thing feels wrong. My mother refuses to take care of herself can be a mother looking at a situation differently from the adult child caregiver. Like an adolescent, listening to parents offer direction or an opinion and refusing to do what parents ask. How do these gaps or differences in beliefs widen as we age?
06:29:73 Pamela D Wilson: When children grow up and move out of the parental home, they choose similar or different lifestyles and establish new friendships and relationships. It’s as if —parents and adult children—go on with their separate lives until a need for caregiving brings families back together. Becoming a caregiver is when differences of opinion can arise about why my mother refuses to take care of herself.
07:01:32 Pamela D Wilson: Initiating communication surrounding a belief or perception that my mother refuses to take care of herself is essential to solving relationship stress. Caregivers and care receivers who are more willing to talk and understand each other’s perspectives have a better chance of resolving conflict about opposing beliefs of why my mother refuses to take care of herself. Communication skills and focusing on a beneficial outcome for the caregiver and care receiver support improved relationships.
07:38:61 Pamela D Wilson: Culture can broadly impact family response to peer or family pressure to act a certain way. The United States has a very individualistic culture where individual responsibility exists to make choices. In other cultures, throughout the world, family relationships take priority over an individual’s needs. These cultural differences can result in conflict. The individual’s self-esteem and independence can affect the desire to go along with different family desires versus being given the cold shoulder or being shunned by family members for choosing to act differently.
8:23:59 Pamela D Wilson: While we all hope that parents and siblings can accept family members with different beliefs and lifestyles, this does not always happen. I talk to many caregiving families where fractured relationships exist between siblings who are unable or unwilling to accept differences in beliefs, opinions, and lifestyles. In these situations, there is often a single primary caregiver—most likely a daughter—who chooses to take on the stress and worry of caring for aging parents
8:58:46 Pamela D Wilson: Add to this family discord challenges of my mother refusing to take care of herself—so stressful. The care situation is like being in one of those old-fashioned pressure-cookers, ready to explode at any time. Let’s talk now about why telling people what to do doesn’t work, contributing to why my mother refuses to take care of herself. Does anyone like to be told what to do? Usually, only if one is asking for directions or help.
9:33:08 Pamela D Wilson: When linking the idea of being told what to do with communication gaps, the idea of different understandings or interpretations arises. Have you ever had a conversation where you thought you were very clear in offering an explanation or communicating, and the person on the receiving end did not at all understand the information you provided? This communication glitch is a frequent occurrence if we do not take the time to restate an understanding of a conversation or how we perceive information.
10:14:16 Pamela D Wilson: Let’s use a medical appointment as an example of a communication glitch. An elderly parent visits the doctor and receives a health diagnosis of type 1 diabetes that requires blood sugar monitoring and insulin injections. The parent, unfamiliar with doctors because of a lack of experience with the healthcare system, doesn’t know to ask questions. Instead, mom or dad receives prescriptions and go to the pharmacy to pick up a glucometer, insulin, and syringes.
10:51:35 Pamela D Wilson: Rather than asking the pharmacist how to use this equipment, the parent takes it home. Puts it on the shelf. Three days later, the parent ends up in the hospital due to a diabetic emergency—blood sugar too high or too low. When asked about using the glucometer and insulin, mom or dad sheepishly admits no—because of feeling intimidated by the doctor and not wanting to ask the pharmacist.
11:26:69 Pamela D Wilson: This is an extreme example of a communication glitch that happens in the healthcare system to illustrate how not asking questions or feeling intimidated can also result in communication gaps and misunderstandings within the family. We are off to a break. If this is the first time you are joining the show, The Caring Generation is not limited by time zone or location—caregivers worldwide listen. The show and the transcript that you can read are on my website at pameladwilson.com. This is Pamela Wilson, caregiving expert, author, and speaker on The Caring Generation. Stay with me; I’ll be right back.
0:13:39:77 Pamela D Wilson: This is Pamela D Wilson, caregiving expert, consultant, and speaker on The Caring Generation. Welcome back. Helpful information for caregivers and aging adults are in my book: The Caregiving Trap: Solutions for Life’s Unexpected Changes, available through my website www.PamelaDWilson.com where you can also check out my caregiver course online, Taking Care of Elderly Parents: Stay at Home and Beyond. This online course features 30 hours of webinars with practical steps for how to take care of elderly parents and make a plan for aging and health. It’s never too early to make a plan to live the best life possible in your later years.
0:13:25:19 Pamela D Wilson: Before the break, we talked about why my mother refuses to take care of herself related to adult children telling a parent what to do and considering communication gaps that happen. How many of us realize that the information or directions we give to elderly parents or other people don’t make sense because the information is too complicated? Let’s go back to a parent diagnosed with type 1 diabetes and the importance of creating a schedule to take blood sugar and give insulin.
0:14:03:04 Pamela D Wilson: Suppose the parent didn’t ask. The doctor didn’t explain the importance of the time sensitivity of blood sugar testing before or after meals plus administering insulin to manage blood sugar levels. In that case, the perception that my mother refuses to take care of herself may exist when in reality, mother has no idea of what she is supposed to do with the glucometer and insulin or syringes and why.
0:14:39:02 Pamela D Wilson: Rather than understanding the relationship between different aspects of health that result in a diagnosis of diabetes, maybe mom is superstitious about diseases because of cultural beliefs. Let’s say that mom is superstitious. She may believe that evil spirits are punishing her for something she did years ago, which caused the type 1 diabetes. Add to superstitious beliefs that mom has never been a person on a schedule.
0:15:12:37 Pamela D Wilson: The perception that my mother refuses to take care of herself will be a major issue with the doctor’s office if this is the case and for mom managing diabetes care. You are mom’s caregiver. You see all of this happen, and you are frustrated. Unless you make an appointment to take mom to the doctor to learn how to manage type 1 diabetes, you won’t be able to change why my mother refuses to take care of herself to my mother can and will take care of herself and we’re going to put these superstitions aside.
0:15:53:33 Pamela D Wilson: Add to this asking mom what she understands or thinks about the cause of the diagnosis. Even more importantly, will mom do what it takes to manage the diagnosis if she gains a good understanding of what she has to do? This parent–caregiver conversation is often missed because families are too rushed. They don’t realize the impact of a health diagnosis, and may not trust medical professionals. Some individuals might believe that health problems will cure themselves they wait long enough.
0:16:35:14 Pamela D Wilson: Elderly parents, because of a lack of knowledge, may fail to tell adult children of health concerns until the concerns become significant and irreversible. Challenges dealing with insurance companies and the healthcare system—if one has never had to do this before—can also be troublesome. Many elderly, middle-aged, and younger adults who attempt to schedule healthcare services through a regular physician may find this a challenge to navigate.
0:17:09:81 Pamela D Wilson: So instead, treatment for these individuals occurs in the hospital emergency room with no follow-up with a primary care physician because that relationship doesn’t exist. Going to the emergency room only places a band-aid on the health issue. The emergency room is for emergency care. Doctors don’t address preventative actions to prevent the concern from becoming worse or the possibility of the patient returning to the emergency room due to lack of regular care.
0:17:48:34 Pamela D Wilson: Without the help of a family member or a professional to walk parents or consumers through navigating the healthcare system, emergency rooms can become the source to manage health concerns when it appears that my mother refuses to take care of herself or brothers, sisters or other family members don’t know what to do. This is not to say that an elderly parent may not refuse to participate in care. Refusals are next on the list of why telling a parent what to do may not work out as you think.
0:18:30:07 Pamela D Wilson: Let’s say that a mom with diabetes doesn’t want to use the glucometer or take insulin by syringes. in this case, there are other options for a continuous glucose monitor to support of ongoing treatment. However, without a family member or another person to mention this option, to provide support—that continuous glucose monitor may not be offered. It does require skills that must be learned. Care refusals by elderly parents bring back concerns of why my mother refuses to take care of herself.
0:19:09:64 Pamela D Wilson: The issue here is not mom’s refusals but a lack of understanding of how to work through health insurance and doctor issues to establish regular and ongoing care. If you are in a situation where you believe my mother refuses to take care of herself, it’s time to start asking questions. A lot of questions. Gaining an understanding of a parent’s health insurance and establishing ongoing, regular care with a primary care physician is one of the first steps to arrive at better care for an aging parent.
0:19:50:97 Pamela D Wilson: Not all disease diagnosis is supported by technology like diabetes. The adult child caregiver still has to take the lead to attend doctor appointments, ask for other options and learn about diabetes disease management or other disease management—assuming mom is willing to do whatever it takes to manage the condition. Support from a family caregiver can alleviate concerns from medical professionals about mom being a difficult patient or reasons why my mother refuses to take care of herself.
0:20:30:66 Pamela D Wilson: Perceptions about care refusals can result in poor care or bias from healthcare professionals. During my years as The Care Navigator for clients, I had many clients viewed as problem patients or non-compliant patients by physicians, medical practices, and hospitals. I can say that it was not that these individuals didn’t want care.
0:21:01:78 Pamela D Wilson: They lacked an understanding of how to work with the healthcare system’s constraints to get the care that they needed—and because of their actions and refusals, they faced discrimination and bias. I made sure that these misunderstood clients—much like caregivers who say my mother refuses to care for herself—received good care. All family caregivers can learn to become advocates for parents who seem to be difficult.
0:21:33:75 Pamela D Wilson: It is essential to explore the reasons for why my mother refuses to take care of herself instead of ignoring parents whose behaviors are frustrating. All parents have the right to make choices about their daily lives and healthcare participation. However, by providing factual information and discussing the consequences—the pros and cons—of participating or not participating, an elderly parent who wants to remain in control of decision-making can make better choices.
0:22:10:96 Pamela D Wilson: In so many cases, a lack of experience with the healthcare system, gaps in knowledge or understanding, and fear or concern about trusting medical providers result in why my mother refuses to take care of herself. We will continue this conversation later in the show when we talk about the different roles that family caregivers can play that contribute to why my mother refuses to take care of herself.
0:22:41:67 Pamela D Wilson: Up next, an interview with Dr. James Coyne about happiness, reality, and responses to challenging health diagnoses. If you are looking for help with decision-making about care for elderly parents or making a care plan for yourself, I can help. Visit my website PamelaDWilson.com to schedule an eldercare consultation. Click on How I Help, Family Caregivers, and then Elder Care Consultation. This is Pamela D Wilson, caregiving expert, caregiving speaker, and elder care consultant with you on The Caring Generation. Stay with me, I’ll be right back.
0:23:50:78: Pamela D Wilson: This is Pamela D Wilson, caregiving speaker, expert, and advocate on The Caring Generation program for caregivers and aging adults. Whether you are twenty or 100 years old, you’re in exactly the right place to learn tips to help you and your loved ones plan for what’s ahead. If you’re not sure how to talk to your children about caregiving issues or if you’ve tried to talk to your aging parents. Let me start the conversation for you.
0:24:18:38 Pamela D Wilson: Introduce your parents or your adult children to my YouTube Channel, where there are hundreds of caregiving videos. Share this podcast and my website pameladwilson.com with elderly parents, spouses, and siblings to make caregiving something we talk about. Let’s talk about happiness, facing reality, and responses to challenging health diagnosis with Dr. James Coyne. who ranks in the top 200 of all North American psychologists for the impact of his work.
0:24:53:76 Pamela D Wilson: Dr. Coyne welcome. Everybody wants to be happy. Based on your research is happiness an illusion?
0:25:01:03 Dr, James Coyne: Well not necessary an illusion. But it’s not necessarily within everybody’s reach either. And I think that happier people often cope more adaptively. But I think that people who are not inclined to be happy can just make themselves more miserable trying to force themselves to be happy. I think rather than happy or sad, hopeful or pessimistic, I think sometimes there’s certainly a role for realism and acceptance. I think that a lot of the literature misses that.
0:25:35:40 Pamela D Wilson: And to your point, to what degree do our feelings and emotions affect our ability to create happiness?
0:25:41:38 Dr. James Coyne: I think very much, but I think some of it is our basic biology. Some of us by nature are more optimistic, more positive people. And I think that others are not. I also think that there’s a group of people who sometimes cope quite effectively by approaching stressful situations with what I call a defensive pessimism and what others have called that. And what that means is they’re inclined to worry about the worst happening and then experience relief when that doesn’t. And that’s an important part of mobilizing their resources to initially experience that shock and sense of overwhelming. But it has to be put into a perspective. It’s part of a more positive adaptive process.
0:26:30:94 Pamela D Wilson: Is there any correlation between happiness and being self-satisfied with life or any other measures that if we kind of pursue might make us happy?
0:26:39:72 Dr. James Coyne: Definitely that’s true. But I think also that one of the issues is that people who have more resources and better health are actually, you know, they’re inclined to be happy. I think poor health and poor environment incline people to be unhappy and I think sometimes, we get confused. We confuse the power of having good resources and good health with the power of happiness.
0:27:12:91 Pamela D Wilson: I read an article and it was called “Hope May Be Useless Against Cancer.” It was a study that indicated that there’s really no relationship between emotional well-being and survival. How can that be?
0:27:25:65 Dr. James Coyne: Well I think that, a lot of cancer, particularly at the end, is very driven by biological processes. And that there may be weak, if any links between how we feel and what we do and the outcome of cancer. And I think on one hand, that’s discouraging. On the other hand, it’s liberating so that we don’t blame people when they experience inevitable negative outcomes like progression and even death. We don’t blame them for having caused that by having had the wrong emotions.
0:27:59:42 Pamela D Wilson: Is there a perceived difference in the way that cancer patients believe their emotions affect their survival rates versus maybe how an oncologist would view emotions and survival?
0:28:10:72 Dr. James Coyne: Yes, I think very much that cancer patients are more influenced by the popular culture. And I think popular culture often gives people unrealistic ideas. I personally was quite saddened to see what Farrah Faucett had to go through. And she was definitely creating an illusion. Her belief was that not only could she “beat her cancer” but she could go out on a book tour and explain how she did it. And in fact, it got in the way of her accepting an inevitable negative outcome and being less prepared for it. Similarly with the actor who . . . um, oh . . .
0:28:54:58 Pamela D Wilson: Give me a hint. Give me a hint. [chuckle]
0:28:57:95 Dr. James Coyne: The guy, when who he learned he had pancreatic cancer
0:29:01:99 Pamela D Wilson: Oh, Patrick Swayze. (Note: he may have also been referring to Michael Langdon)
0:29:30:00 Dr. James Coyne: The sad thing was that in order to complete his series that he had committed himself to, his TV series, he went without pain meds that he should have had. Because he would want to have his mind thoughtful. He wanted to think very clearly and in fact, he couldn’t think clearly. He was in tremendous pain. And again, I think hope got in his way of a more realistic assessment and it caused him more physical as well as emotional pain in the end.
0:29:34:85 Pamela D Wilson: Well, and kind of to that end, if positive emotions don’t really have a positive effect on the outcome of cancer do they just make us feel better?
0:29:41:51 Dr. James Coyne: They do and sometimes that’s okay too. I think that people need their illusions at times—if that’s their nature. And I certainly, I’m not advocating smashing people’s hope. But I think sometimes we need to give more of an opportunity to accept their feelings and accept their concerns about what’s going on. And I think too often, oncologists just as well as lay people force a certain coercive positive reaction to cancer. They encourage “you’ve got to be positive about this.” Well it may make a person, a cancer patient, easier to deal with if they’re positive. But it really isn’t affecting their outcome and it may be going against their natural feelings. People need to be able to experience a full range of feelings. I certainly know cancer patients that got a great deal of benefit of getting angry as heck that cancer was depriving them of a future with their children.
0:30:41:86 Pamela D Wilson: Hmm. What about the opposite? Kind of the people that you mentioned who focus more on the reality or the negative? Is there research to indicate that being negative has a harmful effect on health?
0:30:52:24 Dr. James Coyne: You know I exhaustively looked through our dataset. And when we took into account the background characteristics of the cancer people were facing. That accounted for any relationship between being negative and outcome. That is people who were more negative were also facing more difficult situations in terms of the severity of their cancer. We took that into account. Attitude really didn’t make the difference. We initially, when we couldn’t find anything in our dataset, it was a large dataset. We exhaustively looked for the possibility that we were missing something and we weren’t.
0:31:29:53 Pamela D Wilson: So in daily life, we walk down the street and we say to somebody, “oh, how are you?” and we always expect them to say, “oh I’m just great.” But sometimes we hear the exact opposite and then we don’t know what to say. Is there a better solution? A better response?
0:31:42:84 Dr. James Coyne: Well I think the first thing to do is to recognize that we can’t take people’s—necessarily take people’s misery and unhappiness away from them. And I think sometimes we can inadvertently get coercive and give the message we don’t want to hear about what’s going on with them. And I think more communicating and attitude of acceptance and respect
0:32:08:12 Pamela D Wilson: For other people. Dr. Coyne, I thank you so much for joining us today.
0:32:12:19 Dr. Coyne: And thank you.
0:32:13:85 Pamela D Wilson: You’re welcome.
0:32:14:85 Dr. Coyne: Have a good day.
0:32:15:804 Pamela D Wilson: You too. How many of us feel uncomfortable when others express discomfort, share being unhappy, or talk openly about having a life-threatening illness like Dr. Coyne mentioned? Some celebrities and people in the public eye choose to share their cancer battles while others choose to keep the diagnosis private
0:32:37:47 Pamela D Wilson: Here are a few recent examples. Radio host Rush Limbaugh and Alex Trebeck the star of Jeopardy spoke publicly of their cancer diagnoses. Actress Helen McCrory wife of actor Damian Lewis. You might know him as the star of Billions. McCrory most recently played Polly Gray in the Netflix series Peaky Blinders. Their family chose to keep her illness private. Her cancer diagnosis was not disclosed to the public until her recent death.
0:33:11:65 Pamela D Wilson: Here are two questions to ask ourselves as caregivers. The first. How can we live in the present with a parent or spouse who refuses to take care of him or herself and support a loved one in their feelings while balancing the emotions we feel as caregivers who may be watching their life slip away? The second question. How much of a connection is there between realism and acceptance in life? Admittedly we all have to answer these questions for ourself.
0:33:51:09 Pamela D Wilson: If you are interested in learning more about realism, acceptance, and survival, listen to The Caring Generation show Caring for an Elderly Parent You Don’t Like. I’ll put a link in this transcript. My guest on that program is Dr. John Leach, a SERE military expert, who shares research about the psychology of human survival. On any given day, all caregivers can feel like they are fighting to survive.
0:34:21:30 Pamela D Wilson: Up next, more thoughts about why my mother refuses to take care of herself and how beliefs and perceptions can be affected by family relationships. Share this week’s show with your family, friends, and colleagues. You can find the Caring Generation on all of 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. This is Pamela D. Wilson, caregiving expert, speaker, and consultant on The Caring Generation. Stay with me. I’ll be right back.
0:35:32:36 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, and consultant on The Caring Generation. If you are an aging adult or a caregiver not sure what to do or how to plan for care, 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, watch videos, and check out caregiver courses online. There’s something for everyone at PamelaDWilson.com
0:36:09:47 Pamela D Wilson: If you listen to the news, you might hear about healthcare inequity related to persons who have different cultural or religious backgrounds, persons living in rural communities, and others. Distrust in the medical system and the government exists. I am an independent caregiving expert. I work for myself. Even still, aging adults and caregivers ask me all the time if I work for any government agencies which might influence the information I provide or my interactions with clients.
0:36:46:96 Pamela D Wilson: To be clear on this—I do not. My opinions and experiences are my own based on more than 20 years of working in the industry. In addition to healthcare inequity which can stem from a distrust of the healthcare system—a lack of participation in annual checkups, or establishing a relationship with a primary care provider—the issue of a lack of experience can exist. This can be good, right?
0:37:17:92 Pamela D Wilson: If you are healthy and you don’t’ need a doctor. But when an elderly parent—like a mother who refuses to care for herself—needs and wants care, interacting with healthcare providers becomes necessary. When care is needed, a lack of experience or knowledge of the healthcare system can pose problems. If you have interacted with the healthcare system, you know that interactions, medical appointments, tests, and so on can be time-consuming and take a lot of effort and time.
0:37:53:62 Pamela D Wilson: If you are a caregiver who works, when my mother refuses to take care of herself, improving this situation may become your responsibility if your elderly parent is willing to participate but doesn’t know what to do. Some individuals—especially my mother refuses to take care of herself—may view ongoing interactions with the healthcare system as too much time, effort, or expense. For many consumers there is this idea that doctors “fix” health issues.
0:38:30:62 Pamela D Wilson: Doctors don’t fix health issues. They help with symptom management and prescribe prescriptions or perform surgery to address issues. It’s up to individuals to work to manage or improve health. For this reason, not having a primary care physician but instead using the hospital emergency room as a doctor’s office for treatment is not successful in the long term.
0:38:59:81 Pamela D Wilson: Hospital emergency rooms are for critical care, which means treating a life-threatening or severe medical emergency. Patients are treated and sent home. ER physicians suggest following up with a primary care physician. It’s up to the patient to follow up. Some do, but many do not. Which results in the perception that my mother refuses to take care of herself, at least within the healthcare community.
0:39:27:43 Pamela D Wilson: Patients viewed as non-compliant. Those who do not follow healthcare recommendations can be on the receiving end of healthcare bias and poor care. Doctors and healthcare providers place documentation into their files about patients that they perceive to be problematic or not interested in taking action to manage their health. This can create problems when a change of mind happens, and a parent does want to participate and follow care recommendations.
0:40:02:49 Pamela D Wilson: We then have the complicating factor of cultural, religious, and location-based backgrounds combined with healthcare inequity. More consumers not trusting the medical system, so they don’t participate in care. Let’s now look at how family relationships can further complicate thoughts of my mother refuses to take care of herself. The assumption here is that mom or dad do not have Alzheimer’s, dementia, or any memory or brain issue that prevents them from evaluating and making decisions about medical care.
0:40:38:94 Pamela D Wilson: How many children are in your family? In my family, there were six children. One brother and one sister—had already passed away, leaving four of us. My parents both passed away about 25 years ago. I am the youngest child. Are there family designations or roles that result in bias between siblings? The way that adult children interact in care situations for parents and the relationships that children have with parents can significantly impact a parent’s willingness to take care of him or herself.
0:41:19:67 Pamela D Wilson: Let’s look at education. If a child goes to college, this child may be assigned the role of “the smart or educated one.” This child may feel pressured to achieve in ways different from brothers and sisters. Parents may view this child to be smarter and rely more on the opinions and experience of this child creating a little jealousy between children. Then there may be a child who wants everybody to get along, which may not always be realistic.
0:41:54:10 Pamela D Wilson: How many people do you meet that you immediately bond or click with? Those conversations are easy. You feel like you’ve known this person your entire life, and you have a lot in common. Then there are other people you meet who take a lot of time and attention to interact with. Similar to these experiences that we have with others—others can see us in the same way. Someone they click with or someone they have to work to have a relationship with. We could represent that for them. These relationship challenges happen within families when children grow up, move out of the home and then come together again in care relationships for aging parents.
0:42:43:13 Pamela D Wilson: In all situations where potential conflict exists, especially when adult children think or believe my mother refuses to take care of herself, it’s best to focus on concerns or issues instead of refusals. It’s also best to be prepared to have a conversation by having enough information to support your goal and to have a conversation at the right time.
0:43:11:55 Pamela D Wilson: This right time may not be when you want to have the conversation but when mom or dad is in a place where she or he feels the conversation will go both ways. For example, instead of saying, “I’d like to talk to you about bad eating habits, lack of exercise, sitting on the couch all day and doing nothing,” which won’t accomplish anything except making a parent angry, you might say. “Mom, we talked about X last week, and I’ve been doing some research. I’m excited.
0:43:49:54 Pamela D Wilson: I found some information that might be helpful with X. X is that problem you want to solve. And I’d like to share it. When is a good time for you? If you can position yourself in the role of a consultant who shares the pros and cons and places your parent in the role of making a decision, it might be easier to change the course of my mother refuses to take care of herself to help mom to take action.
0:44:22:25 Pamela D Wilson: Ways NOT to do this include a discussion of other roles in families. We have the rescuer who can be similar to the person who wants everyone to get along. This child may be uncomfortable with conflict or disagreements and jumps in to offer solutions. This can be helpful or damaging for a parent or anyone. If the rescuer is continually rushing in to “fix” things, this takes away the opportunity for a parent to be self-sufficient and create solutions.
0:45:00:82 Pamela D Wilson: The martyr may be the person in the role of the primary caregiver, IF he or she continually calls attention to the amount of work done or the effort put forth and attempts to make everyone else feel guilty for not appearing to do anything. There are positive ways to involve people in supporting aging parents that don’t make them feel bad.
0:45:26:21 Pamela D Wilson: Some families have drama queens. If this is you, you know who they are. Five minutes with this person, and you are emotionally drained. Enough said. The last family role I want to talk about is the victim, this can also be a caregiver. But it can also be an elderly parent. Persons who have a victim mindset believe that everything happens to them—that they are powerless. If this person is your parent, this might likely be a lifelong behavior pattern that your mom or dad supported or tolerated.
0:46:06:64 Pamela D Wilson: Victims can view every suggestion, solution, or conversation negatively and avoid taking personal responsibility for anything he or she has done—resulting in the perception that my mother refuses to take care of herself. When caregivers find themselves in these situations, it is essential to realize that no one can motivate or make anyone else change. With this realization comes the insight that the only person we can change is ourselves.
0:46:42:73 Pamela D Wilson: When care situations can be put into the perspective of having a choice of how we react or respond and realizing that while we may feel responsible, we are not solely responsible for the outcome. Because we need the participation of a mother or father, who refuses to care for herself or himself. To move forward, initiating a discussion with dad or mom who refuses to care for him or herself can identify if there are any common care goals or interests.
0:47:20:42 Pamela D Wilson: Initially, if a parent is mentally or emotionally disconnected from self-care, common goals or interests may be challenging to identify. It’s as if you are looking for that “needle in the haystack” to get started and build momentum. To add perspective, think of a time when you knew you should do something but were not fully motivated. What did you do—how did you get started? We will continue this conversation after the break.
0:47:54:23 Pamela D Wilson: If you’d like to learn more about the experiences and interests of other caregivers, follow me on social media. My posts respond to caregivers who complete the caregiver survey on my website. On Facebook, follow me at @pameladwilsoncaregivingexpert where you can join my online caregiver support group, The Caregiving Trap. Follow me on Twitter @caregivingspeak, Instagram @wilsonpamelad, and Linked In pameladwilsoncaregiverexpert. I’m Pamela D Wilson, caregiving expert, advocate, and speaker on The Caring Generation. Stay with me. I’ll be right back.
0:49:02:36 Pamela D Wilson: This is Pamela D Wilson, caregiving speaker, author, and expert on The Caring Generation. Are you struggling to balance work and caregiving responsibilities? Does your company or group offer caregiver support programs or education? If not, share my website pameladwilson.com with the human resources manager or decision-maker in your company. I’ll be happy to talk with them. Let’s return to finding that needle in the haystack.
0:49:31:89 Pamela D Wilson: Let’s say my mother refuses to take care of herself but doesn’t know where to start. Caregivers and elderly parents may have very different ideas about what is important. Activities or projects that might interest your parent may not be on your list of things that you think should be done. How do you arrive at a place of 50/50 participation where you, the caregiver, feel like you are moving ahead, and mom or dad feel the same?
0:50:05:80 Pamela D Wilson: If the relationship is challenging, the initial agreements may have nothing to do with improving a care situation but may be more of learning how to build and establish a working relationship with a parent. Think of this as building a relationship at work or building a relationship with a colleague. Initially, when we meet someone and attempt to establish a business relationship, we may start slowly to see if we can trust this person to follow through and do what he or she says.
0:50:44:49 Pamela D Wilson: This can be similar to a person who has not been involved in the healthcare system working to gain trust with a physician or another provider. A need exists. An attempt is made, and we see where it goes from here. There are no guarantees in any relationship—caregiver, parent, healthcare system. But if we put our best foot forward, the likelihood of success is greater. With an elderly parent who refuses care, the situation may be one step forward and one step backward.
0:51:23:59 Pamela D Wilson: It is important to create a plan so that expectations on both sides are clear. Success or progress is defined. Steps backward are defined. Let’s look at a straightforward example. A person who eats sugary foods or beverages—sodas, coffee with sweeteners, cookies, candy, cake, and other sweets every day wants to reduce sugar consumption.
0:51:59:28 Pamela D Wilson: If you’ve ever tried to change an eating habit, you know this can be very difficult. Some days are great. Other days you take a step backward and eat a bag of cookies. Change for anyone can be difficult. Especially if the change involves an activity that has never been done before, like learning a new habit or establishing a new routine. Fear of failing plus the effort required to make a change can be an obstacle for anyone.
0:52:29:34 Pamela D Wilson: Changing health habits—like setting a goal to lose weight—is an activity that may not show immediate results. This is especially true if you or a parent have tried before and failed to reach a weight loss goal. Finding the motivation or the “why” to create a regular habit and keep up with the habit is the path toward success—in addition to having someone who can support you on the way toward success.
0:53:03:93 Pamela D Wilson: As a family caregiver, for my mother refuses to take care of herself, you may have to be that “cheerleader” who leads the way. As the caregiver, you can also seek support from others with expertise in the area where the goal resides. If physical fitness is the goal, maybe you meet once with a trainer to develop a routine that your elderly parent and you can do together, and then you’re that person who carries the goal to the finish line.
0:53:39:65 Pamela D Wilson: You may also need to meet with a nutritionist or another specialist who can meet the desire to change the diet. Not everyone has the same type of diet. As a caregiver or an aging adult, it’s common to have a goal in the area of health and not be sure how to achieve the goal. This is an area where seeking support from an expert or a specialist can save time, frustration, or money and move the situation toward incremental success so that efforts continue to build and succeed.
0:54:19:33 Pamela D Wilson: Achieving one success can create the motivation to keep going and transform a position of care refusals into a situation of success that is all about finding a starting point, all about mutually agreeing on a goal, and working together.
0:54:41:81 Pamela D Wilson: Thank you for joining me on The Caring Generation – the only program of its kind connecting caregivers and aging adults worldwide to talk about caregiving, health, and everything in between. Invite your family and friends to listen each week. I am Pamela D. Wilson, caregiving expert, advocate, and speaker. I look forward to being with you again soon. God bless you all. Sleep well tonight. Have a fabulous day tomorrow and a great week until we are here together again.
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