Caregiver burnout is a significant problem, and one that will likely be on the rise if we don’t address it. In the U.S. alone, there are about 39.9 million caregivers who are providing care for adults with illness or disability. The work of these people is done out of the love they have for their friend or family member, and usually there is no reimbursement involved.
Over half (75%) of all caregivers are female, and the average age is 69.4 years old. Sadly, it’s estimated that 30% of caregivers dies before the loved one they are caring for. This is likely due to the high demand placed on caregivers, and the limited time they feel they have to care for themselves.2
Truthfully, the work of a caregiver is invaluable. However, that doesn’t mean it comes without costs. The financial, emotional, and physical costs of caregiving can be profound. 2
For example, in 2013, the value of the services caregivers provided was estimated to be $470 million- more than the value of paid caregiving services and total Medicaid spending that same year.1
With this high demand and low level of self-care, it’s understandable that the phenomenon called “caregiver burnout” can occur- sometimes without the caregiver even realizing it.
This article will explore the concept of caregiver burnout and provide strategies to prevent it and relieve it, if it already exists.
What is Caregiver Burnout?
Caregiver burnout is defined as: “A state of physical, emotional and mental exhaustion that can create negative and unconcerned attitudes.”4
Burnt out caregivers may experience the following:
- Fatigue
- Anxiety
- Depression
- Change in attitude (from caring to unconcerned)
- Guilt for spending time on themselves
- Hopelessness3
What Causes Caregiver Burnout?
Typically, burnout can arise from the caregiver not having enough help, and/or doing more than they are capable (financially, physically, or emotionally).
Many times, the caregiver is so focused on the needs of their loved one that they don’t take care of themselves.
While caring for one’s self physically is highly important (and often neglected when caregivers feel too busy/overwhelmed) many caregivers also don’t find the time to take care of themselves emotionally, mentally, or spiritually either.3
Other Contributors to Caregiver Burnout
1. Unrealistic Expectations
Caregiving is an extremely admirable desire and service. However, it’s not always something that has a clear, positive impact on the loved one.
For example, if a loved one has a progressive condition, they may experience changes that are a normal part of the disease, such as increased agitation or aggression. The caregiver being a daughter or spouse (or another loved one) is not likely going to improve the mood or behavior, because it’s part of the illness.
This is not to say the work of a caregiver is irrelevant. Rather, to highlight that there are things that cannot be “fixed” or changed by the caregiver, so bringing in someone else to help could be mutually beneficial to the caregiver and the loved one.
2. Role Confusion
Once one takes on the role of “caregiver” it’s easy to forget their original role- spouse, child, sibling, friend etc.3
Losing sight of the original role can lead to one taking on more than they typically would.
For example, prior to Sara’s husband’s stroke, he had some wounds on his feet. He would go to a wound clinic to have them cleaned and dressed weekly. Now that he’s had a stroke and unable to walk or get out of bed without assistance, Sara decided she can do that herself and doesn’t need a nurse to come to the house.
While it’s understandable that the caregiving role will place new demands on the caregiver, confusing roles can place an unnecessarily high demand on the caregiver.
3. Lack of Control
For some, caregiving is more or less thrust upon them. They take on this role because they feel it’s what they “should” do, but many times there isn’t much of a plan set up for caring for their loved one.
Caregivers can get frustrated by this lack of plan, funds, and resources to fully care for their loved one.3
4. Unreasonable Demands
Many caregivers put a lot of pressure on themselves. Oftentimes, this is due to the unspoken expectation that they should be the sole caregiver for their loved one.
High demands can come from other sources as well, inlcuding other family members and the loved one being cared for.3
5. Lack of Recognition:
It’s actually common for burnout to go unnoticed. Caregivers don’t realize their mood and behaviors have changed, which can have negative consequences for their loved one and themselves.
If this occurs for a prolonged period, the caregiver may not be able to function properly and can even make themselves sick.
Symptoms of Burnout
- Withdrawal from friends/family
- Loss of interest in activities
- Feeling down, hopeless, irritable
- Apetite changes, weight loss, or both
- Sleep disturbances or altered sleep patterns
- Increased illness
- Feelings of wanting to hurt oneself of the person they’re caring for
- Emotional and physical exhaustion3
6 Tips to Prevent Caregiver Burnout
1. Have an outlet. Better yet, outlets
Talking to trusted friends and family can be a great way to get support and relieve stress. Choose people you feel comfortable with opening up to.
Find a counselor or therapist if you need/want it. Seeking professional help is nothing to be ashamed of! In fact, it’s very healthy and helpful! Your counselor will not only listen, but may be able to provide you with tools and strategies to help cope with stress.
Join a support group. While friends and family can be great resources, many people find great solace in talking to others who are going through the same thing at the same time.
2. Take time for yourself.
I know, I know, this one is easier said than done. However, I believe it to be one of the most crucial steps in preventing or relieving burnout.
In fact, this is a necessity, although it is often confused for a luxury.
While there are so many analogies I could use here, I’ll pick the most commonplace- put your mask on before you help someone else with theirs!
We’ve all heard the flight attendant give these instructions prior to takeoff. Although we intuitively know we should do this in the event of an increase in cabin pressure, we don’t tend to apply it to life (although we need to).
Just like you’ll be phsically unable to help if you don’t have oxygen, you’ll physically, mentally, emotionally, and spirtually be unable to help your loved one if you don’t take time to breathe every day.
Ask a friend, family member, or volunteer to come over for a few hours so you can enjoy a bubble bath or go for a walk outside, or take that dance class you’ve wanted to!
Doing things you enjoy is not selfish, it’s energizing! Take time to recharge daily.
3. Take Care of Yourself
While this may seem redundant, it’s not. Many people, caregivers included, don’t truly take care of themselves, even if they do have time set aside to do so.
Eating a balanced diet, exercising, and getting enough sleep are essential!
These are things we all know, but it’s important to ask yourself, “Am I really achieving that?”
Today, there are so many ways you can track your sleep, eating habits, and exercising.
Some examples include:
1. Setting a bedtime alarm so you get into bed and to sleep on time. (This link will show you how to do that: https://support.apple.com/en-us/HT208655)
2. Using a device, like a Fitbit, to track activity. Some will even track your sleep. (Here’s a list of the best Fitness trackers of 2021: https://www.pcmag.com/picks/the-best-fitness-trackers)
3. Writing down your food intake in a food journal or app and talking with a dietitian (see my interview with a dietitian here: https://theseniorcenteredpt.com/how-to-approach-nutrition-as-you-age/) or your primary care doctor about your nutritional habits and needs. (Here’s a list of food journal apps, I’ve used My Fitness Pal and really like it: https://www.healthline.com/health/food-nutrition/top-iphone-android-apps#my-fitness-pal)
4. Go see a physical therapist or get a personal trainer. A PT can evaluate you and let you know if you’re in need of PT, a wellness program run by a PT, or to see a trainer. Having another person help keep you accountable to your exercise can be extremely helpful. (Here’s a link to my YouTube channel that has all kinds of exercise videos: https://www.youtube.com/channel/UCRxZVn1cDGyo_p7ZbxhkeUQ)
4. Educate Yourself
Have you ever gone to take a drink of water and it’s actually milk? That surprise comes from expectations and reality not aligning. Having realistic expectations is important.
It’s very helpful to know what you can expect from the progressive condition your loved one has.
Also know that they may eventually need more help than you can give and that doesn’t indicate you’re a failure. It indicates that you’re choosing to do the best thing for your loved one.
Here’s a list of potential sites that you may find useful, depending on your loved one’s condition:
1. The Alzheimer’s Association: https://www.alz.org/
2. The Parkinson’s Foundation: https://www.parkinson.org/
3. The ALS Association: https://www.als.org/understanding-als/what-is-als
5. The American Stroke Association: https://www.stroke.org/en
6. The National Multiple Sclerosis Society: https://www.nationalmssociety.org/
5. Allow Yourself to Be Human
It’s okay to be tired/upset/frustrated, or whatever it is that you feel!
Experiencing burnout is common and not something to be ashamed of!
You must know and recognize your limits and ask for help when you need a break.
6. Ask for Help
There are many, many resources out there where you can seek and receive help.
Asking family or friends, seeking out volunteers from your church or organization you belong to, and professional respite care are all options!
Click this link to help you find respite care anywhere in the U.S.: https://archrespite.org/respitelocator
Thank you!
To all you caregivers out there and those who are helping/supporting caregivers, thank you! The work you do is invaluable!
I hope this article provides you with some tangible ways to get the help you need so you Have the Strength to Live Life to the Fullest!
Sources:
- https://www.caregiver.org/resource/caregiver-statistics-demographics/
- https://www.agingcare.com/discussions/thirty-percent-of-caregivers-die-before-the-people-they-care-for-do-97626.htm#:~:text=Thirty%20Percent%20of%20Caregivers%20Die%20Before%20The%20People%20They%20Care%20For%20Do,-Follow&text=Rough%20statistics%20show%20that%2030,are%20high%20on%20the%20list.
- https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout#:~:text=Caregiver%20burnout%20is%20a%20state,and%20using%20respite%20care%20services.
- https://www.ama-assn.org/media/23686/download#:~:text=Role%20confusion%3A%20Many%20people%20are,into%20the%20role%20of%20caregiver.&text=Lack%20of%20control%3A%20Many%20caregivers,organize%20their%20loved%20one’s%20care.
