Why Caregivers Don’t Get The Help They Need – The Caring Generation®
The Caring Generation® – Episode 116 December 15, 2021, On this episode caregiving expert, Pamela D Wilson shares tips for caregivers who struggle to get the help they need for loved ones. Aging parents and spouses needing care can lack insight into health concerns. Additionally, caregivers can underestimate the effect of stress on their ability to provide care and make good decisions.
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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.
Why Caregivers Don’t Get the Help They Need
Watch More Videos About Caregiving and Aging on Pamela’s YouTube Channel
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, navigating the healthcare system, 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. 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, friends, and co-workers who may be caring for their family 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, Linked In, or YouTube.
What Do Caregivers Struggle With?
Today, we will talk about why caregivers don’t get the help they need. While there are many obvious reasons—like not asking for help—a better response is that knowledge and question gaps exist.
While family members accept the role of being a caregiver for an aging parent, spouse, grandparent, or another person in the family, there will be things that happen that can’t be anticipated—unless you have a lot of previous experience as a caregiver.
For example, did you ever think you would experience a pandemic like COVID where the effects will continue for many years—when hope existed in 2020 that we would soon be back to normal? The pandemic has made life more complicated for caregivers and persons who need care.
As a caregiver, responsibilities begin with a bang—like a parent experiencing a heart attack—or with small tasks. Caregivers say, “oh, it will be better in six months.” Six months pass. Caregivers say, “oh, another six months.” And then all of a sudden, five years or ten years have flown by.
Life as a caregiver isn’t easier, it’s only more demanding and complicated. Depending on when you first became a caregiver, it can seem like life is passing you by. Maybe you hoped to attend college, get married, have children. None of that is working out. Why caregivers don’t get the help they need – knowledge gaps small and big, expectations, not knowing what questions to ask, timing, and more.
Caregiving Can Be Wonder-Filled
Let’s picture a knowledge gap. In this case, thoughts or expectations about an adventure like hiking the Grand Canyon. How many of you have been to the Grand Canyon. It’s one of the 7 Wonders of the World. When you think about it, caregiving is a wonder of sorts – it’s wonderful or wonder-awful.
Visiting the Canyon can be an education in itself. So much to experience and learn. A lot like being a caregiver. It’s one thing to see the Grand Canyon in a picture book. Hiking the Canyon is a different experience. The Grand Canyon is one mile deep, 277 miles long, and 18 miles wide. That’s information that you don’t get by looking at a picture in a picture book.
Why caregivers don’t get the help they need is that the responsibilities of becoming a caregiver can be challenging to imagine. Like imagining hiking the Grand Canyon. If you are a caregiver, did you, on day one, think you would be doing all of the tasks you’re doing today? How long did you think caregiving would last? Why caregivers don’t get the help they need is a lack of planning for the things that are likely to happen.
Responding to the Unexpected
But, here’s the catch—how do you plan for something, like caregiving responsibilities, when you have no experience or knowledge about what will happen in the future? What would you have done differently if you knew six months before the pandemic struck? For example, would you have researched the 1918 flu pandemic and learned that it killed 675,000 people in the United States?
If you did, you might have learned that another similar pandemic occurred in 1957, then again in 1968, and again in 2009, and you might have created a plan for what you might do. I’ll link to a page here in the show transcript so that you can read about these events for yourself.
You might have also learned through your investigation that the seasonal flu virus results in a range of 12,000-61,000 deaths per year in the U.S and between 140,000 to 810,000 hospitalizations with up to 45 million people becoming sick with the virus. Statistics from the flu virus are pretty startling.
Yet before COVID showed up on the scene, the flu was a blip in the news every fall and winter that rarely caught anyone’s attention. Pneumonia is another contagious virus that affects older adults every year.
Planning for the Unimaginable
So with all of this knowledge out there, why caregivers don’t get the help they need—results from everyone reacting today to more pressing day-to-day issues like COVID. Because many people are in constant reaction mode, there’s not enough time to plan and plan for the future.
Add to this technology use and distractions from receiving emails, responding to text messages, and constantly searching the Internet to find helpful information. How many of you quickly lose an hour or more on your smartphone, computer, or tablet and then look back and wonder where that time went? It’s easy to lose track of time.
Why caregivers don’t get the help they need is because planning for unimaginable events or predicting the future is hard. If we all had a crystal ball wouldn’t that make life easier? But it would take away the surprises in life. Planning to be a caregiver or a person who needs care isn’t a fun activity. Why wouldn’t we prefer to plan a vacation or something else?
Practical Steps for Planning
If you have participated in business planning at your place of work, you’ve probably heard of SWOT – strengths, weaknesses, opportunities, and threats and SMART – specific, measurable, achievable, relevant, and time-based.
As complicated as SWOT and SMART might seem, using these systems for planning can help you set and achieve realistic goals in caregiving and any area of your life. How many times did you set a goal and fail because you didn’t fully understand the actions it took to achieve the goal? Why caregivers don’t get the help they need results from overestimating or underestimating the time and work to complete tasks or projects.
Maybe you thought going to the grocery store or taking a parent to a doctor’s appointment would take you two hours, but it took you three hours or five hours. You miscalculated the time for traffic, wait times, and the unexpected. So much of what we plan to do relies on prior experience that we don’t have when we become a caregiver.
Caregiving is Work
Why caregivers don’t get the help they need results NOT from realizing the benefits of having a care plan, financial plan, or a family plan. Or even talking about caregiving in the family. Caregivers juggle many tasks and moving parts—like many people do at their paid jobs. Many don’t view caregiving as work. It is work.
Most caregivers average 20 to 30 hours every week caring for adult parents. Most admit that they had no idea how demanding caregiving tasks would become. Why caregivers don’t get the help they need includes underestimating time or hoping that things will get better.
Overscheduling Time and Underestimating Needs
When I operated my care agency, there were times when my care managers struggled to keep up like most caregivers. When this happened, I talked about tendencies to overschedule. Overscheduling is the idea of being optimistic, thinking more can be accomplished in a typical workday.
How often do you find yourself overscheduled? Are you late to meetings or appointments or constantly rushing because you underestimated time or overscheduled yourself?
Aging parents, spouses, grandparents, and family members who need care often lack plans or underestimate the time to recover from an illness. How many of your parents have enough money to pay for their care regardless of the type of care they need? How many parents didn’t realize that the heart attack they had years ago would turn into more severe conditions like diabetes, COPD, or memory loss?
Chronic Diseases Multiply If Not Managed
Being diagnosed with one chronic disease is like that “buy one get three free deal” you see at the store. First, you have one sickness, and over time it multiplies.
Then, you’re left with more health problems than you didn’t imagine because you were too busy to pay attention. Not a good situation for anyone.
Why caregivers don’t get the help they need. Not receiving information in a manner that is easy to understand, not asking enough questions, or getting information and recommendations that can be evaluated and that make sense from healthcare providers.
The Challenges of Learning
The meaning of easy to understand differs by individual. Here’s an example. How many of you love algebra, trigonometry, statistics, or calculus? These are topics that I struggled with in high school and college. Give me English, history, or debate any time. I had no interest in math.
On the other hand, I’m good with accounting because I relate accounting entries to owning and running a business which I’ve done for more than twenty years. I’m not sure if I had this mental block when I was in algebra class. For me, it was so difficult. The reason I had to learn it made little sense, even though I do use some equations today occasionally.
I spent hours after class working through equation after equation that meant nothing to me so I could do well on my college entrance exam. Finally, I found a great teacher at a local community college. Without his help, I wouldn’t have done well on my exams.
Getting Help From the Right Person
This instructor was proof that a person who is passionate about a subject and who can explain it at a very basic level can teach or help another person—in this case, me—who struggled with the concepts or ideas. Why caregivers don’t get, the help they need can be partly in the mind and in thoughts.
Look at my algebra example. I didn’t like the class and struggled. But I found a motivator – passing the math portion of the college entrance exam—that was important to me. The English portion—that was easy.
So I did what it took. I put forth the time and effort and passed the exam with a good score. In all aspects of life, if we don’t have the right motivation or access to someone—a teacher, mentor, or an expert who speaks our language and can instruct or help us, it’s likely we’re going to struggle and sometimes fail—repeatedly. Why caregivers don’t get the help they need is not seeking the right person, place, or setting to obtain and understand the information you need to care for an aging parent or a spouse.
Winning Against Change
A related challenge for why caregivers don’t get the help they need are habits and behaviors. The care receiver faces an equal challenge in this area. When two people are fighting against change, be it a change in health or daily activities, caregiving situations can feel like climbing a mountain or hiking the Grand Canyon when you’re not prepared.
Let me give an example that some of you may be familiar with. Your parent has memory loss that is advancing. More often than not, mom or dad doesn’t want to change out of dirty clothes, take a shower, take medications, or get out of bed. These refusals frustrate you.
Initially, you become demanding and threatening, and what happens? Remember when you were a child, and your parents told you that you had to do something? You probably did just the opposite to spite mom or day. Today the tables have turned. Telling mom or dad with Alzheimer’s or dementia what to do falls on deaf ears. The effects of refusals raise your blood pressure.
Moving in a Positive Direction
So in this situation, it’s essential to look at personal habits and behaviors and begin asking a few questions. Track your thoughts and feelings. What makes you angry or frustrated? What makes you happy?
How do you move in a positive direction with a stubborn parent, who won’t follow directions and can’t remember what you said 30 seconds ago? Caregiving situations improve when the caregiver changes thoughts, habits, behaviors, and responses to an uncooperative parent.
But how do you know what to do without any help or instruction? That’s the question all caregivers should be asking. Why caregivers don’t get the help they need is that they think they are doing the right things – without knowing what the right things are.
Simple Changes Can Deliver Amazing Results
What if one or two small recommendations could make your caregiving situation easier, less time-consuming, more pleasant? Would you be interested? But, like me and algebra, you have to be motivated enough to want a different result and be willing to put in a little time and effort.
Visit my website pameladwilson.com to check out my caregiver course online that helps you make a care plan for aging parents. The course is Taking Care of Elderly Parents: Stay at Home and Beyond. It includes are 30 hours of webinars and other information. In addition, you will learn practical steps for taking care of elderly parents, spouses, and yourself. Participating in the course is like binge-watching a movie series where you learn to prepare for everything you never expect, and you can always go back and watch it again.
We’re off to a break. The Caring Generation is not limited by time zone or location—caregivers worldwide can listen any time of day. This is Pamela D Wilson, caregiver expert, consultant, and author on the Caring Generation. Stay with me. I’ll be right back.
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 about caregiver support programs, health, well-being, and other resources to help you and your loved ones plan for what’s ahead.
Beginning Conversations of Care
If you’re not sure how to talk to your children about caregiving issues, if you’ve tried to talk to your aging parents and that didn’t go so well, let me start the conversation for you. Share The Caring Generation podcasts with family and friends. There are over 110 episodes answering your questions.
Visit my website, pameladwilson.com to find resources for caregivers, my caregiving library, blog, online courses, transcripts of these podcasts, and how to schedule a 1:1 eldercare consultation with me by telephone or video call.
How Are Your Skills?
Let’s talk about more reasons why caregivers don’t get the help they need. Before the break, we were talking about caring for a loved one with memory loss who has resistant behaviors.
Upon the diagnosis of memory loss, a loved one or family members also might be in denial about having memory loss or a parent being told that they are forgetful. If you’ve had this experience, you know that mom or dad can get pretty angry if you point out a memory glitch.
Believe it or not, the same thing happens with caregivers but differently specific to being a good caregiver. The same concept also applies to the workplace and many experiences in life. Are you as good as you think you are in any skill or ability? For example, if you play chess, can you play with the best chess players? If you ski, are you proficient at blacks, moguls, and trees?
If you play chess, cards, golf, or another game, how do you feel when you meet or play with someone who is better than you? Might playing against a skilled competitor change the way you think about the level of your skills and make you want to learn more or do better? There’s a researched theory called the Kruger Dunning Effect that sheds light on this topic.
Why Caregiving is More Work Than Most Imagine
This research confirms that most people overestimate their abilities. So, for example, a caregiver thinks they can do more in a set amount of time, thus overestimating and overscheduling. A caregiver may think they can go on and on without a break. But then experiences overestimating abilities that eventually translate to anger, resentment, exhaustion, and burnout.
These degrees of overestimation occur in many areas of life, health, leadership skills, ethics, emotional intelligence, interpersonal skills. For example, how many times did you receive a job evaluation or do you receive feedback that you immediately think is wrong or unfair? If this has happened to you or if it happens to you, your behavior may represent the research of the Kreuger-Dunning effect.
Can Beng Overly Optimistic Be Harmful?
Take this one step further, specific to caregiving relationships, how might overestimating abilities – the caregiver’s or the person needing care—be harmful to the relationship or harmful to health? And how much of this overestimating relates to denial? Oh, it’s not that bad. Oh, it’s okay. When there’s really this train accident about ready to happen.
Denying that memory loss is as advanced as it is or that significant safety risks exist can result in dangerous situations for the person who needs care. Children may deny that mom or dad needs more help than they do because they want to believe the best. That is, until an accident happens that proves that a parent or a spouse can’t be left home alone safely.
A Lack of Understanding Can Result in Not Planning
How often have you made a lot of mistakes or made poor decisions in your day-to-day life? This can transfer to your caregiving skills. If so, these unfortunate events can result from that overestimating abilities or rushing to make a decision when you don’t have enough information. Or you don’t know what you should know.
Unfortunately, similar to an aging parent or a spouse who lacks the insight or the ability to recognize that they have memory loss – some caregivers consistently overestimate their abilities or underestimate the severity of potential situations.
Research confirms that many individuals who make mistakes or poor decisions suffer the consequences but rarely look back to realize that their lack of insight, education, or conscientious behavior is the cause. It’s almost like reverse memory loss and a lack of understanding for caregivers.
I speak with many caregivers who express frustration with aging parents who ignored their health, didn’t follow doctor’s recommendations, and now call the children asking to be helped or rescued. In caregiving and all aspects of life, it’s better to acknowledge things that you might not know—instead of assuming you know everything.
Blind Spots Are Learning Opportunities
That no matter how good you are at something, the opportunity to learn always exists. On the other end of the spectrum, let’s relate this idea of the Kreuger Dunning effect to doctors and other knowledgeable specialists. Some have a blind spot because of their expertise. Some brilliant people don’t realize that others don’t have the same level of skills.
So as a result, many of these professionals can’t explain ideas in straightforward terms that most people understand. This overestimation of others’ knowledge is the reason that most consumers go to a doctor’s appointment, leave, and have no idea what was discussed. For example, aging parents don’t get prescriptions filled because they don’t understand the negative health consequences of not taking medications.
Are You Too Busy to Learn?
Add to this example people in the middle who think they know everything. Some caregivers or care receivers who are not open to receiving suggestions or information because they don’t believe the information can benefit them. Why caregivers don’t get the help they need, or any of us don’t get the help we need, is that we’re continually rushing about and we’re too busy to learn.
How often do we find time to sit down and make a plan? Any plan? What things would you like to accomplish in the week, month, six months, a year, or two years? Do you have any idea? Most people don’t. Life keeps moving ahead.
When we’re not present day-to-day to realize that there is so much more out there for us. More to learn, more to do, more experiences, we limit ourselves and our potential. How often do you hear anyone say, I exercise every day so that I can still be active when I’m 70 or 80. How many people think that far ahead?
Yet, forward-thinking is needed so that we get what we want out of life as a caregiver or the person needing care. Consider the positives and the negatives. The consequences of your actions today on your life 10, 20, 40, 50 years down the road. Time passes so quickly. One day you’re twenty years old, and the next, you’re 60 facing retirement, caregiving, and health issues.
Instead of asking why caregivers don’t get the help they need, take charge of your health today. Share the knowledge you gain from this program about being healthy with family members. Caregiving is a family issue. Health becomes a family issue when siblings, parents, or grandparents lack the knowledge or don’t know the questions to ask to take better care of themselves.
What’s Your Plan?
Become the health ambassador and the educator in your family. As we discussed, being healthy and engaging in healthy habits is a pattern we can all embrace. How can you respond to those who say, “oh, I’d like to lose weight, or I’d like to feel better?”
You can ask about their plan to complete their goal. You can also say when doing X, like losing weight, is important enough to you, I’m sure you’ll do whatever it takes to reach your goal—but not until then.
The challenge with goals of any type is that we set goals and we don’t know the steps to take to make them happen. Or, as we’ve discussed today, we might have a goal and not realize what it takes to achieve the goal. This is where finding a friend, a mentor, or a group of people—like a caregiving support group—who have achieved what we want to achieve is beneficial. Or who are struggling through similar experiences trying to find a path forward.
How to Get Where You Want to Be and Have the Information You Need
Remember, it’s the questions you don’t ask. The knowledge you don’t have, and thinking that you know everything which is why caregivers don’t get the help they need. Take action, set realistic goals, create a plan and a timeline, and you’ll get where you want to be.
Here are a few quotes about planning. “Good planning without good working is nothing,” by Dwight D Eisenhower. “It takes as much energy to wish as it does to plan.” Eleanor Roosevelt. “Plan for what is difficult while it is easy. Do what is great while it is small. Sun Tzu. And the last, “always plan ahead. It wasn’t raining when Noah built the Ark.” Richard Cushing
Thank you for joining me on this week’s episode of The Caring Generation – the only program of its kind connecting caregivers and aging adults worldwide to talk about caregiving, well-being, health, and everything in between. Invite your family and friends, co-workers, and everyone you know to listen each week. I’m Pamela D Wilson, caregiving expert, eldercare consultant, 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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