Why Being a Caregiver Sucks
The Caring Generation® – Episode 127 March 2, 2022. On this episode, Why Caregiving Sucks, caregiving expert Pamela D Wilson examines how care responsibilities can lead to emotional distress and potential elder abuse. Learn what family caregivers can do to take steps to regain their personal power.
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Today, I’m here to answer the question of why caregiving sucks. But more importantly, when you are in a situation where being a caregiver or any part of your life isn’t meeting your expectations, what are the steps anyone can take to navigate through difficult times?
If you listen to the show, most of these podcasts are transcribed or associated with an article and a video on my website. I’ll share a few obvious reasons why being a caregiver sucks, but I don’t plan to spend much time on the negative.
Why Being a Caregiver Sucks
A video on the website page talks about caregiving challenges and how caregiving can be a transformational life experience.
Watch More Videos About Caregiving and Aging on Pamela’s YouTube Channel
In the time we have together, I’d like to focus on steps to move forward. Dwelling on why caregiving sucks, while it’s okay to acknowledge how you feel, isn’t a place to focus your mental energy. Negative thoughts steal your spark.
Tips to Survive Extreme Life Situations
For more tips about surviving caregiving situations, listen to The Caring Generation Podcast Episode 68 Caring for An Aging Parent You Don’t Like. Dr. John Leach about the Psychology of Human Survival. Learn about the differences between individuals who survived POW camps and Auschwitz versus others who simply gave up and how they survived.
Common Caregiver Experiences
So, first, a few experiences that all caregivers can relate to especially if you have been a caregiver for some time. If not, this may be eye-opening, but you’ll know what to expect.
Why caregiving sucks is because of the never-ending care responsibilities. They eventually end, but that means that mom, dad, a spouse is dead, which is another experience that sucks.
Family caregivers put themselves through a lot of self-sacrifices. Feelings of anger, overwhelm and frustration are common.
Why Caregiving Sucks for Professional Caregivers
I also want to share why caregiving sucks for care professionals. Care professionals are individuals who are nurses, CNAs, and others who, like family caregivers, don’t receive enough recognition.
Family caregivers of persons with dementia or memory loss will be able to relate to loved ones being verbally or physically aggressive. Professional caregivers deal with aggressive patients every day like many family members except the persons they care for are not their loved ones.
Verbal and Physical Aggression
I think anyone who has cared for a person with dementia has been probably been hit, bitten, had your hair pulled. Maybe been spit at, had to chase a loved one who was running away from you, or stop a parent from attempting to get out of the car while you were driving 55 miles an hour down the freeway.
Personally, that was one of the most interesting experiences I remember to this day. I can personally attest to experiencing all of these, some of them with laughter because the situations felt so crazy and out of control at the moment. Humor is helpful in these situations.
However, if you are this person’s loved one you probably look at the situation much differently than if you are a stranger, a nurse, or a CNA. A patient who verbally or physically threatens you or harms you can be quite frightening. You don’t know this person, and you have no idea how far they will go in their behaviors.
Difficult Family Members
Another reason why caregiving sucks for professional caregivers is dealing with contentious family members. Yes, it’s no surprise that angry and frustrated family caregivers take their emotions out on nurses, CNAs, hospitals, care communities, nursing homes, or doctor’s office staff.
The issue in most cases is that the nurse or the CNA who happens to be there is on the receiving end of the anger, which may not be directed at them. Families become frustrated for many reasons.
It’s the person who is most available or accessible who gets an earful of the problems and frustrations. So I want to thank these individuals who work in the care system for their patience and dedication to come back day after day to face frustrated family members. God bless you all.
Family caregivers deserve the same praise for coming back day after day. I know many who would like to run off and not come back, although they might feel guilty.
Being a Caregiver Disrupts Life
Moving past these concerns for why caregiving sucks takes us to the idea of looking at how being a caregiver changes your life. For early caregivers, probably not much.
But when you’ve been doing this for 5, 10, or more years and the work continues to increase; you might not realize what caring for an elderly parent is doing to your marriage, family, and you. Dedicated caregivers can lose sight—almost like wearing blinders.
Because you focus on the needs of a parent to the exclusion of almost everything else in life you give up friendships, social activities, and sometimes a job. By the way, I don’t recommend giving up a job to become a full-time caregiver for many reasons that have long-term effects.
If you are considering moving home or moving in with a sick parent, listen to The Caring Generation Episode 80, Moving Home to Care for a Sick Parent. An interview with Dr. Catherin Riffin from Weill Cornell Medicine sheds light on caregiver interactions with the healthcare system.
Caregivers lose contact with the outside world. The person you care for becomes your world. Before we leave this thought I want to briefly talk about why caregiving sucks and relates this to the possibility of not doing an excellent job as a caregiver.
Family Caregiver Abuse and Neglect
Research exists, I will put a link in the show transcript, that confirms 47% of caregivers for persons with dementia surveyed confirmed that they were abusive in some manner to the person they cared for who was diagnosed with memory loss. You might think, wow, almost 50% of caregivers admitted to being abusive.
Then you might wonder how the abuse comes about. Nearly 60% of caregivers admitted to being verbally abusive. Verbal abuse may be snapping, yelling, or making inappropriate remarks.
Between 5-10% reported they were physically abusive. Physical abuse could be something as simple as grabbing a parent’s hand or arm to get them to move along with the caregiver to slapping or hitting.
Another 14% of caregivers confirmed that they were neglectful. Neglect could be anything like not changing wet depends, not giving medications on time, not paying attention to nutritional or hygiene needs, or ignoring calls for help. Neglect can also be leaving a loved one who has dementia at home alone for long periods of time.
The study confirmed that all caregivers reported high levels of emotional stress. The abuse was more likely to occur in situations where the care receiver, so mom, dad, a spouse, exhibited psychological aggression or were physically abusive.
So in a sense, the caregivers may not have known how to diffuse a situation where they experienced emotional or physical abuse from the care receiver. As a result, they responded with like behaviors to defend themselves. Caring for a loved one with dementia who experiences memory loss and eventual loss of physical abilities is more difficult than you might imagine if you have never personally had this experience.
Caregivers Are Good People in Difficult Situations
The point of talking about these difficulties in the contact of why caregiving sucks is to shift thinking away from caregivers being bad people because they are frustrated and may be unintentionally abusive. Rather let’s consider the idea that maybe caregivers lack the skills they need to succeed.
Think back to grade school and high school. You learned skills. You may have struggled in some of the classes. There were probably people who seemed to sail through school or those who seemed to have it all.
There may be people like this in your workplace today. They’re the ones who get promoted, or they are the popular people. You may be jealous of their success.
Caregivers Who Gain Skills Maintain More Balance in Life
Instead of being envious and comparing yourself or your life to others—I know caregivers do because you tell me your stories. Make your own life. Make your own success.
Sometimes all you need is a person to bring an idea to light to light a spark within you. A person to help you think outside the box or the limits you set on your life. Instead of thinking why caregiving sucks, why not wake up every day and think life is great?
What Are Your Caregiving Skill Gaps?
In school, at work, and in caregiving, learning basic skills allows everyone to do better, to make better and different choices. What are your skill gaps in caregiving? You may not know.
Think about where you are struggling, where you are having problems. Those areas may be your skill gaps. How do you figure it out?
Let’s start with one of the essential skills contributing to why caregiving sucks: navigating interpersonal relationships. People problems. Difficult people. Toxic people. People you’d rather avoid. This may include the person you care for, your siblings, or others.
Your Reactions Are Insights Into Learning Opportunities
Begin noticing your reactions. How many times have you been in a situation where you reacted negatively. Or you heard someone say, “well, Mary made me do that.”
Or maybe the person you care for blames everything that goes wrong on you. They can’t change because you make it impossible. Do not own their problems.
Set your boundary. By gaining the insight that we control our responses, we can realize that no one makes us do anything.
Own Your Actions
You own the actions that got you here today to that place where caregiving sucks. No one else did this to you. You responded.
Life experiences don’t make us react in a particular manner. We can choose our response. Rather than feeling like life sucks, poor me or no one else understands, or no one else has it as bad as I do, choose differently. We have to find the power to pull ourselves up by the bootstraps.
The Power to Make Different Choices
One reason caregiving sucks is that we have not realized the power to make different choices. Family caregivers and professional caregivers—nurses and CNAs— we all can adjust the way we think and our actions—how we respond.
Let’s start with a very common experience that I call the mirror to shed light on this. Research confirms that people react negatively to qualities in other people that we don’t like in ourselves or our life. So in a sense, we see another person as mirroring our behaviors or what we don’t want.
I will use myself as an example. I do not like negativity or the purposefully adversarial relationships that I see promoted in the news. One side against another. No, no, no.
I may be wearing rose-colored glasses, but I would instead prefer to put my energy into positive things and actions that solve problems. I choose not to spend time or be around negative people who have harmful intentions toward other people.
That is not how I want to live my life. When I am around negative or critical people, I want to escape as quickly as possible. It’s possible to talk to some people about this, others not so much.
What Do You Let Into Your Life
Let’s look more at why caregiving sucks. How much time do you spend in a situation or with people with characteristics or qualities that you do not like or qualities that you are trying to work out of your life?
If you’re not sure of what these qualities or characteristics might be— here’s what you can do to figure it out. It’s pretty simple.
Every time you respond negatively to a situation or a person, start asking yourself why. Begin questioning your actions and your thought processes. Why am I responding this way? What in my beliefs, biases, or personal history is causing my reaction?
How much is your thinking influenced by your surroundings—your workplace, workmates, teammates, your family, people you spend time with, or the news? People tend to behave and have similar interests as those they spend time with.
Who Do You Spend Time With?
When you look at the people you spend the most time with, this experience can bring to light your values, character, goals, and what’s important to you. Is your experience matching up to the goals and plans you have for your life?
Who is in your tribe, posse, or social group? Are these people supporting you?
The Risks of Becoming a Socially Isolated Caregiver
One of the issues with caregivers is that they become socially isolated and give up friendships due to time devoted to caregiving responsibilities. How many of you are in this place where you have become isolated and caregiving sucks?
Why caregiving sucks. Social isolation, loss of friends, and you planned a different life from the one you live today.
If you’ve given up all relationships except work, this means that your social network may be people at work with who you’re not comfortable sharing your caregiving story or personal life with. If you’ve given up a job or are a 24/7 caregiver, your social network may be limited to the person you care for.
Caregivers and Care Receivers Become Isolated
Isolation and a lack of support are reasons why caregiving sucks. Social isolation leads to depression and vulnerability for the caregiver and the care receiver.
If your mom, dad, and spouse rarely leave the house they’re stuck with you for their social network. All of this goes both ways.
Caregivers give up their lives to become caregivers. Older adults lose their choices because they didn’t make a plan for their care.
The plan was made for them by health issues or other life experiences, and now they are as stuck and feeling that life sucks as much as the caregiver. The difference if you are the caregiver is that I hope you are still healthy and able to pursue your goals and dreams.
Aging Limitations Impact Caregiving Relationships
Your elderly parent or spouse may have limitations due to their health, physical, or memory problems. So they don’t have as much cognitive ability to solve the issues we’re talking about, which is why you, the caregiver, have to solve why caregiving sucks for both of you.
Why caregiving sucks. When caregivers become dependent on loved ones for housing, money, and food,
they dig deeper into the caregiving trap. The Caregiving Traip is the name of my book and my online support group. When you become reliant on others, any change you make or any change that happens will upset the apple cart.
Change Can Be Threatening
Let’s say you want more time for yourself. This desire can cause stress for your care receiver. Mom, dad, grandma, a spouse may feel threatened and react negatively because you not being a full-time caregiver may threaten their sense of security.
On the other hand, a change in their health may require more time and attention from you. Do you see how why caregiving sucks go both ways? It’s important not to blame your situation because you became a caregiver.
What did we say about that? Your actions got you to where you are today. Just as the actions of the person who needs care got them to where they are today. Because you may feel similarly trapped and threatened when they react, you react and vice versa.
Unlearning Non-Productive Behaviors
The step forward from here is to unlearn the behaviors that have engulfed your relationship. Think about why you respond the way you do. Ask the person you care for the same question.
The answers might surprise you both and may improve your communication skills. For caregivers who have been in a caring relationship for a long time, you must create a support network and an exit plan.
Eventually, one way or another, your caregiving relationships will end or change. You may hire help or move a parent to a care community. One of you may die. We can’t predict the future. So we better live for today.
The Importance of Support Networks
If you are a family caregiver, I suggest joining a caregiver support group, online or in-person to increase your social network, although be careful of people you meet online. Not all of them have good intentions.
Caregiver support groups are great places for people to share skills and experiences so that everyone learns. Take a caregiver course and seek out an eldercare consultant like myself or a counselor to advise you on more challenging decisions and choices.
Separately, and I know you’re going to say your time is limited, work toward creating your support tribe or posse outside of caregiving. Colleagues or friends who will support your goals and the changes you want to make in life.
If you’re in a place where caregiving sucks, it’s probably past due time for a change.
Create Life Outside of Caregiver Roles
Think about your outside of caregiving group as creating the company of you. Look at your life as a business plan. If you don’t plan your personal life like you plan your work or caregiving life, you will be stuck in that spiral of why caregiving sucks.
Because you may not have all of the life experience you might need, consider who might help you and where you can find these people. Think about how you can contribute to the lives of other people. The group must be reciprocal, meaning benefitting everyone.
The group could also be a social group that already exists that you join. A book club, a hiking group, birdwatching – whatever it is that interests you.
There are Chambers of Commerce and other business-type groups you can join if this is your interest. I don’t know if you’ve heard of mastermind groups. They primarily operate for businesses. Why not create your own personal mastermind group?
Regardless of the choices you make to increase your social contacts; it’s going to take work. Not everyone will be interested or have time.
If you are setting up your own group, set a few ground rules or boundaries for participation. You’ll need a leader to hold everyone together – will that be you? Family caregivers—everyone needs a support network to transform out of why caregiving sucks to why life is pretty cool.
Care Receivers Need Social Networks
On the same token, if you can find other people to come to the home to be companions or visit your elderly parents or spouse, this will benefit them.
Are there family members or friends you can invite to visit and then make yourself scarce? Can you take your loved ones to a group where they can socialize?
Social connections raise our vibration from negativity to hope. It’s the sense that someone cares or that we have someone to call when we’re having a bad day, plus we can be that person for someone else.
Transform Why Caregiving Sucks into a Beautiful Life
The beauty of working through why caregiving sucks is that we come to know that changing live situations is possible. We can pay back that person or individual who sparked the thought in us about getting out of darkness by helping other people do the same.
Become a bright spot in your own life. Inspire yourself. Do what it takes to create a plan for your personal life and find people to support you.
Improve your caregiving skills, so those gaps that once seemed like mountains are only occasional hills. Caregiving doesn’t have to suck. I’m not here to tell you any of this will be easy because you may have a lot of changes to make depending on where you are.
But you’ll never know how far you can go until you start. Start today.
Share this article, podcast, and video about Why Caregiving Sucks with people you know who are looking for hope help, and support. Have a fabulous day tomorrow and a great week until we are here together again.
Tune in each week for The Caring Generation with host Pamela D Wilson. Come join the conversation and see how Pamela can provide solutions and peace of mind for everyone here on Pamela D Wilson’s The Caring Generation.
Looking For Help With Your Caregiving Situation? Visit Pamela’s Caregiver Resource and Support Page.
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