Who cares for the caregivers? How to recognize when you need support

Who are the caregivers?

More than 1 in 5 US adults are unpaid caregivers of an adult or child with special needs. But there’s no single story of what that means. 

Caregiving comes in many forms, from caring for children to caring for an aging parent to caring for an adult child or spouse — or all of the above. It can be planned or sudden and unexpected. Full-time and all-consuming or part-time and ever-present. It can last for a few months, or a few decades.

You are not alone. A 2020 AARP survey found that among caregivers in the US:

• 26% report having difficulty coordinating care 
• 24% are caring for more than one person
• 26% are caring for someone with Alzheimer’s disease or dementia
• 23% say caregiving has made their own health worse

All of these numbers have increased since the prior survey in 2015.

What defines a caregiver?

Caregivers come from a variety of situations but roughly fall into 3 categories:

• Formal, paid caregivers. There are 4.5 million paid, or direct, care providers, including home health workers, as well those who work in nursing homes, residential care facilities, hospice, and hospital settings. Paid care providers may experience similar stressors as family caregivers and often contend with low wages, long or unpredictable hours, and challenging working conditions. 
• Unpaid, full-time caregivers. Millions of US adults are dedicated to caring for a family member or loved one with severe health issues. The individual's ongoing need for daily care, as well as frequent or unpredictable crises, make having another occupation nearly impossible for the caregiver. 
• Unpaid, part-time caregivers. Sometimes it's hard to realize that you are a caregiver. Maybe you're also juggling your "real" job and family responsibilities. But just because you aren't attending to the person full-time doesn't mean you aren't a caregiver. If you are coordinating care or you are the person that the home-health aide or the doctor calls, you are a caregiver.

Regardless of whether your situation seems similar to others or not, many caregivers ultimately face similar challenges.

Caregiving is as honorable as it is challenging

Being a caregiver, taking responsibility and putting yourself in service of another — child or adult, family member or not — is among the most honorable endeavors. It can be rewarding and bring meaning. Psychological benefits of caregiving might include feeling close to the care recipient, assurance that a loved one has quality support, and the perspective that comes from dealing with difficult situations. 

But it also takes a toll physically, financially, and emotionally — especially when the caregiver lacks a strong system of support.

Family caregivers often juggle their responsibilities with another job. Many caring for an elderly relative are also still caring for their own children. They are often alone, or feel that way.  In the 2020 AARP survey, only 30% of respondents reported that their care recipient had paid help. 

Without the right emotional, social, and practical support, caregivers pay a price in physical health, mental health, self-esteem, and relationships. It’s no wonder that caregivers are twice as likely as other adults to rate their health as fair or poor.

If you found this looking for information on parental burnout, or the symptoms of caregiver burnout or compassion fatigue, I’m guessing you might be exhausted. 

Caregiver fatigue, burnout, and isolation is real. The stress of caregiving is real.

Many people in this position don’t have the support, resources, or physical and mental space to take care of themselves. But even if you have financial resources, and supportive family or friends around you, the weight on your shoulders and the immensity of caregiving can be exhausting and lonely. 

In this article, we’ll present a checklist of warning signs that may be telling you that you need more support for your own health and well-being. We’ll also look at how common these symptoms and feelings are and what resources are available to help you find some relief. 

Do I need support? A checklist for caregivers in need of care

The signs of caregiver burnout and compassion fatigue can creep up. The symptoms rarely just switch on — instead, what starts out as manageable becomes more and more acute. One day, what was manageable if exhausting becomes just exhausting. 

At this point, it can be easy to forget that you deserve to care for yourself as well. But you do. And if that isn’t compelling enough, know this: If you don’t take care of yourself and pay attention to your own needs, you won’t be able to take care of the ones you love in the way that you want to. Self-care isn’t selfish. It’s necessary. 

Caregiving is a marathon, requiring strength and endurance, compassion and will. Caregiver burnout can do serious damage to your physical and mental health. Burnout is associated with elevated cortisol, decreased immune system, and a higher risk for depression and anxiety. 

• The stress of caregiving has physical consequences. Caregivers are more likely than non-caregivers to experience future illness or disability. 
• Caregivers of those with dementia show higher risk of heart disease and accelerated aging of the immune system.
• Caregiving can impact financial well-being. Caregivers who provide more than 10 hours of care per week demonstrate lower average wages (18% less for men; 10% less for women).

You cannot give what you don’t have. Without care, your body and mind will struggle.

If any of these points ring consistently true, you could benefit from support before the symptoms become overwhelming. Burnout is insidious. It creeps in slowly. 

That’s why we based this checklist on Freudenberger and North’s stage model of burnout. The early stages (at the top of the checklist) can feel positive, like being highly motivated. So they are tough to recognize. We want to highlight these because burnout can become quite serious if not addressed. Caregiver burnout can harm your own well-being and also limit your capacity to care for others.

BetterUp Care™ offers personalized coaching, resources, assessments, and group support to help individuals develop strategies for self-care and skills for stress management, emotional regulation, and self-compassion. 

The items later on the checklist, such as emptiness, hopelessness, or exhaustion to the point of collapse, can indicate a need for medical support and/or therapy. If you are having thoughts of harming yourself or someone else, reach out immediately to a crisis support service such as The National Suicide Prevention Lifeline at 800-273-TALK (8255), 911 for emergencies, or the Caregiver Help Desk by calling 1-855-227-3640.

If you are a caregiver, use this checklist to pay attention to the signs that you need more support for your own health and well-being. And, if someone you care about is a caregiver, be on the lookout for these signs. Share this list, and help them reach out for support. 

What causes burnout and caregiver fatigue?

You aren’t alone. And you aren’t bad, weak, or selfish for feeling this way.

In the early days of a new caregiving role, you can be both consumed and energized by the urgency and newness of the situation. There’s a lot to learn. It might be frightening but it’s also interesting. 

As a caregiver, you feel a strong sense of purpose and mission: you are responsible for the life, safety, and well-being of another human being. You might feel love, joy, satisfaction, and pride in your role. 

Over time, though, the daily schedules and routines of care can start to feel both monotonous and relentless. Doctor’s appointments, enrichment activities, and other caregiving responsibilities can pile up, adding to caregiver stress. 

The care recipient may make unreasonable demands. Children do. So do adults dealing with pain, confusion, fear, and boredom. As a caregiver, unreasonable demands on top of the physical, mental, and emotional labor and the sacrifices you are making can feel offensive.

Causes of caregiver burnout:

We don’t know exactly what causes burnout in some people versus others, but some factors make it more likely. The challenges specific to caregivers could fill a book, and we can’t do justice to it here. The following list may offer you some insight into which of your own stressors might warrant additional attention or support before they tip you toward burnout.

• Lack of control
• Lack of perceived choice 
• Caregiver intensity (long hours)
• Perfectionism, or unrealistically high standards
• Financial stress and other external factors
• Low self-confidence
• Lack of self-care practices, including basic nutrition, exercise, and rest
• Isolation from normal support groups and networks
• Lack of fairness
• Relationship challenges with care recipient
• Cultural conflicts (When caregiving is a strong value culturally, the caregiver may feel more supported. When the culture does not support caregiving, the caregiver may feel less supported and more at risk for burnout.)

The pandemic made caregiving much harder

Whatever was hard for caregivers before became even harder over the past 2 years. Parents — with or without an additional paid job — have struggled. With schools and childcare disrupted, parents have been stretched and stressed. They have taken on the caregiver burden to educate and entertain their children while also keeping them safe and physically and emotionally healthy. 

The impact of coronavirus restrictions on other caregivers has been less well-publicized. Caregivers of adults have also been stressed as restrictions changed or shut down the routines and outlets they might have had while layering on extra fear and precautions. Churches and community centers, swimming pools and libraries, drop-in care and occupational development settings all disappeared for many.

6 ways to prevent and manage burnout and caregiver fatigue

So much of caregiving is outside of one’s control. The emotional and physical load on caregivers is tremendous. But I also see time and time again how small changes over time can greatly shift how we relate to our situation and build resilience. 

The following questions can help you reflect on how these factors may show up in your situation as a caregiver and where you might be able to affect small changes. These questions are based on what researcher Christina Maslach identified as key risk factors for burnout, which we adapted for the unique challenges faced by caregivers.

• Workload: Do the tasks I must complete each day as a caregiver feel manageable?
  
  If not, is there a possibility to get additional help to complete tasks, or to simplify what needs to be done? Can I prioritize what is essential and give myself grace to let the rest go?
• Control: Do I feel confident in my skills as a caregiver?
  
  If not, is there a way to enhance my skill set? Is there a resource — such as a nurse line, caregiver forum, coach, or mentor — I can learn from and turn to with my questions?
• Rewards: Am I rewarded for my hard work?
  
  If not, are there ways to build in even small rewards for myself such as planning to watch a show or asking a loved one to cook my favorite meal or stop by for a chat? Can I give myself permission to take micro-breaks, to pause for 2 minutes to notice the sunset, play a word game, or watch a cat video?
• Values: Does my work as a caregiver feel meaningful?
  
  If not, are there small moments of meaning I can find each week? Or ways I can remind myself of how my work contributes to something important?
• Community: Do I feel connected to others? Do I enjoy positive social interactions throughout my day?
  
  If not, are there ways I can build community? Are there people in my life I can reach back out to with a phone call or a note, or new people I can embrace who are on a similar journey? Can I find a few opportunities every week to be out among other people? Is it time to bring in more support?
• Fairness: Do I feel society treats me fairly as a caregiver?
  
  If not, are there ways for me to feel less alone in this? Is there meaning I can draw from this situation? Do I want to channel my frustrations to be an advocate, for caregivers or for a condition or illness?
  
  

Where to turn for help

Caregivers undoubtedly need better support structures and recognition in our society. You may need tangible support in the form of an extra set of hands, training, or equipment.  

But you also have to start taking care of yourself — today. Some of the best ways to care for oneself as a caregiver are to:

• Build your village. We are wired for connection. Human connection is a salve against stress.
• Identify your controllables. Name the factors that are within your control, as you work to accept the rest.
• Seek support before it feels dire. Caregiving is as challenging as it is honorable. It’s never too early to practice prevention.

Social connection is one of the most powerful places to start. When the stress of caregiving is pushing you to retreat inward, look outward. Turn toward neighbors, friends, and family. Even if you can’t ask for help, ask for connection.

As a caregiver, your life and your contribution to this world are important. You are doing critical work. Prioritizing self-care is vital.

Small shifts, like lowering your expectations of yourself and challenging perfectionism with self-compassion can make a big difference over time. So can believing that you deserve to be supported and cared for as well. 

The good news is that support exists – BetterUp Care is proud to be a source of support for caregivers. There are many actions one can take as a caregiver, or as someone in a position to support a caregiver, that can go a long way towards preventing burnout.

Your job is hard, and your work determines our future. BetterUp is here to support you in being the best caregiver, and person, you can be.