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Why Caregiving is Harmful to Your Well-Being
From:
Pamela D. Wilson - Caregiver Subject Matter Expert Pamela D. Wilson - Caregiver Subject Matter Expert
For Immediate Release:
Dateline: Denver, CO
Thursday, October 20, 2022

 

The Caring Generation® – Episode 152 October 19, 2022. Learn why caregiving is harmful to your well-being when trying to balance life, work, family, and health. Caregiving expert Pamela D Wilson shares reasons caregivers feel conflicted between obligations to loved ones and managing the complexities of daily life. Have a question?  Follow and connect with Pamela on her social media channels of Twitter, Linked In, Facebook, Instagram, and YouTube or complete the caregiver survey on her website.

To listen to the caregiving podcast, click on the round yellow play button below. To download the show so that you can listen anywhere and share it with family, friends, and groups, click on the button (the fourth black button from the left) below that looks like a down arrow. Click the heart to go to Pamela’s Spreaker podcast page to like and follow the show. You can also add the podcast app to your cellphone on Apple, Google, and other favorite podcast sites.

Why caregiving is harmful to your well-being. As a caregiver, you constantly juggle priorities and respond to time-sensitive situations when caring for spouses, elderly parents, and others. Managing conflict becomes a part of life when caregiving obligations present an emotional burden as you attempt to respond to the complexities of daily life.

What to Do When Caregiving is Harmful to Your Well-Being

Let’s focus on why caregiving is harmful to your well-being, specifically about helping loved ones manage long-term health problems. Examples of long-term health problems are diagnoses like memory loss that advances to dementia or Alzheimer’s, heart disease, COPD, Parkinson’s, MS, physical disabilities that require hands-on assistance, and other conditions that are not expected to improve. Meaning the illness affects daily life but may not be immediately life-ending. 

Standards and expectations that individuals hold for themselves can complicate care relationships. Caregivers want to be helpful and are hard on themselves when things don’t go as they expect.

Identify Solutions

As a result of a desire to be helpful, family caregivers feel stuck in situations where they know they need to take action about the care of spouses and elderly parents they but aren’t sure how to identify the best options. Disagreements may exist between parents and siblings about the right thing to do. 

Caregivers may be angry that brothers or sisters aren’t pulling their weight and helping with the care of elderly parents. So arguments result because families flounder to find solutions to identify complex information needed to make decisions.

Imagine trying to solve a math problem with only half of the equation. Or, these days, trying to get somewhere without access to GPS.

I lived in the Los Angeles area in the 1990s before GPS was available. Cell phones were old-fashioned compared to today. Back then, we used something called the Thomas Guide. If you live in Los Angeles or Orange County, you might know what I’m talking about.

The Thomas Guide is a spiral-bound atlas with detailed street maps to get you from one place to another that you keep in your car. The guide at least in LA still exists today but the users are emergency response providers like police and fire who need access to roads that might not be on GPS.

So, caregiving is harmful to your well-being when gaps, problems, or constraints—that are difficult to identify and manage if you don’t have experience—are out of your control. Or, in many cases, not having information that you don’t even realize you don’t know—would be helpful for making the right decisions.

In a sense, it’s like being blindfolded. You can’t prepare for or respond to things you can’t see coming.

Signs Caregiving is Harmful To Your Well-Being

How can you confirm that caregiving is harmful to your well-being?

  • You feel burned out and guilty and think you’re not good enough
  • Doubts that you don’t have what it takes to succeed in the caregiving role
  • You criticize yourself and others
  • You want everything to be just right—which can be emotionally distressing when other people are involved
  • When others—maybe your siblings, the person you care for, or the doctor—don’t follow through, participate, or follow the plan, you become upset

If you are experiencing any of these issues, caregiving may be harmful to your well-being.

This means that it’s time to consider doing what you can to improve the situation as much as possible by identifying what you don’t know while being realistically optimistic.

Expect the Unexpected

I understand the frustrations caregivers experience. Similar frustrations have been part of my life for more than twenty years, helping caregivers and care receivers navigate the healthcare system.

Even today, I experience unexpected bumps in the road and twists and turns with insurance companies and healthcare providers who assume consumers understand all the details.

When caring for aging parents you will do things you never expected. These include tasks like helping mom or dad bathe, taking blood pressure or blood sugar readings, or managing insulin. Caregivers take on responsibilities once assigned only to healthcare providers.

Let’s look at an example that describes the constraints, obligations, and complexities that exist on both sides of the healthcare experience—meaning healthcare providers and consumers, patients, and caregivers.

Trust But Verify Information

Unexpected events happen because consumers and patients trust that healthcare providers have their best interests at heart. But the healthcare system, patients, and consumers don’t speak the same language.

Healthcare providers are time-pressured and use healthcare industry terminology. Doctors and others struggle to explain information in simple words. Gaps exist in not realizing the limitations patients face in following through with recommendations.

It’s not as if healthcare providers purposely do the wrong things or try to make life more difficult for family caregivers and the persons you care for—they experience the same limiting factors. Limiting factors for everyone include a lack of time—there simply isn’t enough time to get everything done.

Navigate Power Imbalances

Some insurance companies make healthcare providers go through hoops to approve patient care. Doctors choose their careers to help patients but instead spend hours on the phone with insurance companies in peer-to-peer reviews to get treatments approved. In addition, medical office billing staff spend hours on details like correcting or revising diagnosis codes.

Here’s an example of what happens behind the scenes. Suppose you are a patient or a caregiver whose treatment plan or prescription was declined by an insurance company.

In that case, a peer-to-peer review is a meeting your doctor participates in to convince an expert at the insurance company to approve your care. You can appeal the insurance company’s decision if the peer-to-peer review is declined.

Persist Through Challenges

If you’ve ever been through this process, you know it can take weeks or months while your loved one’s health might suffer from not receiving the appropriate care. The result?

Emotional stress, worry, sleepless nights, and more reasons caregiving harms your well-being. These circumstances result in caregivers or patients getting frustrated and giving up due to the time involved in attempting to care approvals.

Do not give up. The lesson in all areas of life is to be compassionate with yourself and to extend compassion to others facing struggles that you might not be able to see.

Being involved in the care of others benefits from learning to manage conflict and negotiate expectations. You do this if you have a job.

Your job description has certain expectations for which you are accountable. Being accountable means delivering on commitments.

In the workplace, an example of this is your job review or performance appraisal. Did you do what you agreed to and what was expected? Goal setting and accountability exist in life.

Develop Capacity

why caregiving is harmful to your well-beingWhy are goals difficult to achieve? Something called capacity can get in the way.

For individuals, capacity means changing attitudes and behaviors while developing skills and knowledge that increase the ability to deliver a result. But—building capacity can take time, effort, and motivation.

So when it comes to health and changing health habits. The person with the health problem may not be motivated.

For example, caregivers or aging parents may have distractions in their environments, like having a paying job or a family that requires your attention over what might be viewed as a time or effort burden—working on health problems.

So while you’d like to do all these things to improve or manage a health diagnosis, taking action may be impractical from a time, financial, mental, or emotional standpoint.

Understand Physician Recommendations

When you, a spouse, or a parent see the doctor, the doctor tells you to do X, Y. But doesn’t have the time to explain the importance, ask if you have questions or if you can commit and deliver—it’s a problem.

Recommendations become a problem because the healthcare system has shifted the responsibility of self-care and self-management to patients and their caregivers.

This means that it’s up to you as a healthcare consumer to ask the right questions, know things you probably don’t, be willing to change habits and behaviors, have the knowledge it takes to know HOW to make these changes, and, if not, understand and accept the consequences of not taking action.

Involve the Person Who Needs Care

The accountability the healthcare system places on consumers is a tall order if you lack experience and knowledge about navigating the healthcare system and how other aspects of daily life impact health.

Caregiving is harmful to your well-being when you solely accept this level of responsibility and don’t involve the person who needs care.

To successfully manage long-term health issues, it’s essential to establish relationships and open communication with doctors and specialists you trust to tell you everything you need to know. Even if it’s news you don’t want to hear.

Establishing these relationships can be challenging for some older adults who believe that doctors know everything and hesitate to ask questions. So when you think about the healthcare system and its control over consumers, patients, and caregivers, there is an imbalance of power.

For example, your health insurance plan has a list of physicians you can see, providers who are in or out of the network, and prescription drugs they approve or not.

Because of these restrictions, caregivers or patients who interact with the healthcare system can feel at a disadvantage and feel like they have little or no control. This lack of control means that being a caregiver for loved ones with ongoing illnesses can feel overwhelming when you need help and can’t get it.

Be Realistic About Commitments

Let’s discuss suggestions to counteract the reasons caregiving is harmful to your well-being. Admitting that it’s impossible to do everything, control everything, and everyone is a start.

Now, consider all the things you have on your to-do list and what you can realistically complete. Are you overly optimistic about what you can accomplish in a specific time frame? Or excessively confident about your skills and abilities?

Failure can be a path to success. Negotiating with yourself and others—the person you care for, family members—about what is doable raises your credibility.

How many people do you know who make commitments and never follow through? You might hear, “I’ll call you tomorrow, or I’ll take care of it,” and nothing happens.

These people are probably not bad-intentioned—they don’t connect their words with making a commitment to do something. If you want to be viewed as trustworthy, reliable, or credible, realize that your words are a commitment.

Investigate What Isn’t Being Discussed

Solving problems can involve investigating what isn’t being said. The doctor makes a recommendation. An elderly parent listens but doesn’t agree or disagree.

Caregiving is harmful to your well-being because there are gaps in what is doable, people who are overly optimistic or don’t realize the skills, time, or attention it takes to complete a task. You take mom or dad to the doctor and have a list of concerns.

Maybe mom or dad is having trouble walking or standing from a chair. What might the issues be?

  • Is mom or dad overweight placing stress on their knees?
  • Do they have arthritis?
  • Does mom or dad sit all day which means they are physically inactive, which means that any type of activity is difficult or exhausting?
  • Does mom or dad have breathing or heart issues that can make activities tiring?

There could be many reasons mom or dad has trouble getting around. The doctor’s recommendation is to exercise or participate in physical therapy.

Confirm Agreement

This is the time to confirm agreement about healthcare responsibilities. The doctor can work to understand why an issue is happening and make suggestions, but nothing will change unless the person with the problem agrees to do something about it.

Will your parent exercise or participate in physical therapy? Is this realistic and doable?

As the caregiver, you may want a parent to take the doctor’s recommendation because, emotionally, you don’t want to watch mom or dad get worse. You know you’re not strong enough to help them out of a chair or pick them up off the floor if they fall.

So, as the caregiver who does all the work, your self-interest is convincing or helping mom or dad to exercise. Mom and dad want to stay living in their home.

This may not be possible if parents don’t do something or make some changes. The deciding factor is your parent—the person who has to commit the time, effort, motivation, and willpower to do the work.

Be Brutally Honest

Knowing your parent, is it realistic for mom or dad to change their daily routine to include exercise and physical therapy? And will they keep doing this once they start or give up after a few weeks?

This is the time, to be brutally honest with the doctor and give an elderly parent the benefit of the doubt. What happens if mom or dad does the exercises? What can be expected? And what is likely to happen if mom or dad doesn’t follow through?

These discussions are like running a business meeting that includes collaboration, and negotiations about consequences and possibilities. Your elderly parent or spouse wants control over their life.

Well, here it is to the best degree possible. X affects Y. You do X, and this is what might happen. You refuse to do X, and this is what might happen. Cause and effect happen every day in our lives in so many ways.

For example, you were in a hurry to get to work by 8 a.m. and saw that the gas tank was low. But you didn’t want to stop at the station. So now you’re on the way home and stuck because the car is out of gas. Someone has to come to rescue you.

Accept Unpredictable Health Surprises

Health is no different, but the issue is that the consequences are not always obvious. Some things can be managed like lifestyle, exercise, smoking, not smoking, drinking,  not drinking, getting enough sleep, and so on.

Other things that happen inside the body but aren’t visible. They are unknown.

For example, you may have high blood pressure or diabetes and not feel anything. Maybe you delayed getting a mammogram, a colonoscopy, or another screening and have cancer, but it’s not yet causing any problems.

You have no idea that a major problem is about to arise. There are many surprises with health that occur with age.

Some people are healthy into their 90s. Others begin having health problems in their 40s or 50s.

So if you are a caregiver, it’s essential to be realistic about what you can and can’t accomplish and what the person you care for is willing or able to do.

Shared Decision Making

caregiver stressWhen you bypass shared decision-making discussions, caregiving harms your well-being. You might place all of the responsibility for failure or success on yourself.

You didn’t cause the health problems mom, dad, or husband or wife are experiencing. Maybe they didn’t intentionally cause them.

Maybe there was a car accident. Or Alzheimer’s or another hereditary illness runs in the family.

There are health issues we can prevent and those we can’t control.  But once a diagnosis exists, a choice exists about how to respond to or manage the diagnosis.

Opportunity knocks at the door. What will you do? How will your loved one respond?

Accept Responsibility to Identify Consequences

If you want to manage long-term diseases and not have them consume life, accept self-care and self-management as an individual responsibility. You or a loved one can choose to make health a priority to avoid probable consequences.

There are many complications in life. For example, working to pay the bills, raising children, or other things you would rather be doing.

But unfortunately, poor health can negatively impact all of these. This means that initiating conversations with your doctors and healthcare providers is critical.

Becoming more aware of an illness and its consequences can affect how you interact with available support and services—if you take action or delay. Will you participate or not?

Without motivation, interest, or commitment, success will be difficult.  The other option is to accept the consequences and make plans.

In some cases, like a terminal cancer diagnosis, accepting the consequences is the only option.  A loved one will die.

You have four months or less. What needs to be done personally, financially and medically from a planning perspective?

Will hospice care be involved? Does mom or dad want to die at home? What are the burial plans? Is there a will and a personal representative appointed to take care of business after mom or dad dies?

Death is definitive. Most people figure out what needs to be done.

Be Proactive

Having a long-standing illness is less conclusive. Many different things can happen, so people may not be as proactive or make any plans.

A crisis event happens, and the caregiver or the family responds. The next crisis happens resulting in caregiving being harmful to your well-being, and physical and mental states.

Accepting that health problems should be prioritized is the first step to managing caregiver or individual stress. You must be proactive in seeking information and resources to help yourself and your loved ones.

As a result, the caregiver or person who needs care must make choices and decisions and create plans to identify options for better results. Learning the steps to navigate through the healthcare system with a variety of providers is a necessity.

Be Humble and Kind When Seeking Support

There will be days when you will struggle to find answers or someone to help you. But if you are persistent, you will find the help you need.

If you don’t know where to begin, ask your doctor or the staff in their office. Call your health insurance company and ask for recommendations. Ask friends and colleagues at work. Check out resources like my website pameladwilson.com where there is a lot of helpful information and direction.

Make time for the essential things in your life. Don’t wait too long to ask for help. And be open to realizing that you may not see a path ahead when you are overwhelmed.

Be open to asking friends and others for their recommendations, suggestions, and feedback. Sometimes it’s difficult to recognize problems.

We may think we know it all when we know very little. People generally want to be helpful when you approach them in the right way.

Accept You Can’t Do It All

family caregiver support programsAs a caregiver rather than telling elderly parents or a spouse what to do, work toward shared decision-making responsibilities and be realistic about what is doable for everyone.

Just as your parent may not physically or emotionally be able to commit to making changes that benefit their health, you may not be able to commit more time when their health worsens.

Being a caregiver does not mean you have to do it all as long as there is care and support available for your loved one.

Be humble and kind so that you receive the same in return.

Looking For Help Caring for Elderly Parents? Find the Information Including Step-by-Step Processes in Pamela’s Online Program.

©2022 Pamela D. Wilson All Rights Reserved

About Pamela Wilson

PAMELA D. WILSON, MS, BS/BA, NCG, CSA helps caregivers and aging adults solve caregiving problems and manage caregiving needs through online programs, live support groups, and an extensive caregiving library that includes articles, podcasts, videos, and webinars.

   Check Out Podcast Replays of The Caring Generation® Radio Program for Caregivers and Aging Adults HERE

Pamela D. Wilson, MS, BS/BA, CG, CSA is an international caregiver subject matter expert, advocate, and speaker. More than 20 years of experience as a direct service provider in the roles of a court-appointed guardian, power of attorney, and care manager led to programs supporting family caregivers and aging adults who want to be proactive about health, well-being, and caregiving. Wilson provides online and on-site education and caregiver support for caregivers, consumer groups, and corporations worldwide. She may be reached at +1 303-810-1816 or through her website.

 

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Dateline: Golden, CO United States
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