I wrote this blog back in 2012 for Homebound Resources, an online resource for caregivers. I thought I’d repost it here, since the topic is still so relevant. Some of the links may need updating, but please consider reading the content and taking it to heart…
“Wow- you look tired!”
“Tired doesn’t begin to describe it… Mom was up 3 times last night. I have no idea what was making her cry like that. If only I could convince her to stay in her bedroom! Getting her up and dressed this morning was rough. The visiting nurse hasn’t called me back, her doctor’s office keeps putting me on hold and accidentally disconnecting me, we’re on a 6-month waiting list for the day program, and I don’t know how we’ll afford her meds this month. Giving her a bath is out of the question. I’m totally burned out. I don’t know whether to scream or hide.”
The Cost of Caring
Caregiving is rough. There are good days and bad days, although usually most of them fall somewhere in the middle- a sort of “slogging through” type of day, sometimes with no end in sight. Over time, though, the stressors begin to add up. Responsibilities and expectations begin to run right over our personal needs, and the work of taking care of someone else becomes our entire existence. Whether you are what’s called an “informal” caregiver (an unpaid person, like a family member or close friend), or a “formal” caregiver (a professional, such as a nurse, CNA, or social worker), caregiving can eclipse your life. When this begins to happen, people start saying things like “I’m burned out,” or “this is traumatizing me,” or even “I just can’t take this anymore!” Terms like burnout and trauma, however, have specific meanings, and it can be helpful to understand the concepts involved in this area, since intervention and help may look different, depending on what is actually happening.
For formal caregivers, there are specific mandates in the codes of ethics of the professions that relate to self-care, as well as to allowing others to work while impaired by stress or trauma in any way. For example, the social work code of ethics states that “social workers should not allow their own personal problems, psychosocial distress, legal problems, substance abuse, or mental health difficulties to interfere with their professional judgment and performance or to jeopardize the best interests of people for whom they have a professional responsibility” [Code of Ethics, NASW, 4.05(a)]. Nurses, physicians, psychologists, even chaplains have similar directives in their professional codes of ethics. Despite this, education about and training for management of burnout and trauma are not mandated by accreditation standards of training programs, and exposure to such information is anything but uniform! Burnout in the helping professions can have implications not only for individuals and their families, but also for quality and continuity of patient care, and business management- after all, training new employees to replace those who leave is expensive and time consuming!
For informal caregivers, there is generally little information provided until the issue becomes an obstacle. While respite care or sitter services are often offered by medical providers or community services, the value of using them is rarely discussed in detail, and self-care for caregivers is not usually a topic of conversation at appointments for the person receiving care. Without specific directions about self-care, caregivers tend to become overburdened, with the result that personal lives and needs drown under the downpour of responsibilities. Tempers get short, sleep is sacrificed, aches and pains appear where they weren’t before, interest in life beyond getting through the day tends to fall away, too.
The term that is used for this situation is Compassion Fatigue. It’s a term that was coined by Dr. Charles Figley, and it includes three concepts: Burnout, Secondary Trauma, and Compassion Satisfaction. Knowing more about each of these can help us understand just what is happening, and give us some clues as to how to make our situation more manageable.
The Pieces of Compassion Fatigue
Burnout is caused by environmental stress. This might be an inability to access needed services, frustration with medical or other care providers, barriers to care related to money or other causes, or not having the right kind of bed or bathtub that you need. Burnout might also be prompted by a living situation where people around you question the validity of the issues that you find stressful, or by a lack of support from family or friends. The characteristic symptom of burnout is exhaustion- or what my grandmother used to call “bone tiredness.” This probably doesn’t need a whole lot of description for many of you, but it’s the sensation related to continuously beating your head against a wall because of things that you can’t seem to change or effect.
Secondary traumatic stress, on the other hand, is quite different. This is sometimes called vicarious trauma, and is very similar to post-traumatic stress disorder (PTSD). Secondary traumatic stress is when you spend so much time with someone who has been traumatized that you begin to experience the effects, as if it has rubbed off on you. This might happen to a professional who listens to the stories of disaster survivors; it could happen after repeatedly seeing graphic images of accidents or traumatizing events, or hearing other people talk in great detail about their experience with a traumatic event. While somewhat rare in family caregivers, professional providers such as nurses and social workers are at very high risk for secondary traumatic stress. This is characterized by the kinds of symptoms you would see after experiencing a trauma first-hand: nightmares, hypervigilance, flashbacks, inability to concentrate, avoidance of certain types of environments or situations.
Compassion Satisfaction is the third concept in compassion fatigue, and perhaps the most important. Exposure to stressors is not necessarily a guarantee that there will be development of clinically significant symptoms. One of the protective factors that has been identified in the literature has been called compassion satisfaction, a term coined by Dr. B. Hudnall-Stamm. This is the idea that we find value and gratification in what we do, even if there are consequences or challenges. The idea here is that if it were only bad, we wouldn’t continue to caregive- there has to be some kind of reward. For some of us, it’s a sense of honor; for some people, it’s love; for some, religious expectation or filial piety; whatever the reward, it is the benefit to us for continuing on- the satisfaction that we find in the work, beyond a paycheck. Compassion satisfaction is what keeps us going day in and day out- the idea that in the end, it’s worth it.
Together, these three concepts make up what we call Compassion Fatigue. As humans who experience the world around us, whether we are caregiving or not, each of us falls somewhere along a continuum in our work- running from full-tilt burnout to full-tilt satisfaction with what we do. In actuality, very few people are at the extremes of this continuum- most of us are somewhere along the spectrum, experiencing a measure of burnout, and a measure of compassion satisfaction at any given time in our lives. The changing circumstances of caregiving and the myriad necessary contacts with various medical and support systems often will push us down the spectrum towards burnout, before we even realize fully what is happening. For those who are caregiving for someone after a trauma or an accident, such as a combat-related injury or a car accident, for example, there may be aspects of secondary trauma if you have repeatedly been faced with the details of what happened. These exposures can take their effect on you without full notice, until suddenly you realize how much trouble you are having. In other words, you sometimes don’t realize where you are heading until you find yourself there!
The Silencing Response
One of the most common reactions to compassion fatigue is something called the silencing response. This was a phenomenon recognized after WWII, when the recounts of holocaust survivors were often too much for people to bear, emotionally. Those who settled here brought horrific tales of their experiences with them, and many people felt that there was little or nothing that they could have done to help these people, even in the midst of the war. As a result, they could not bear to listen to the stories. In response, people would avoid the topic, become angry with the person speaking, or completely tune them out with inattentiveness or sarcasm. This kind of response is a very natural human reaction, if not necessarily a completely healthy or supportive choice: when something is too much to bear, we avoid it or find any means necessary to make it seem to disappear. The thing that we are avoiding does not necessarily have to be a major event, like the extreme example I just presented- it could be much smaller or more subtle- perhaps we can’t stand to think about the idea of putting our family member in a nursing home, or we know that death is inevitable, but can’t think about it, or perhaps we blame ourselves for the condition of our child.
Reactions that you would see might be things like:
• avoiding the topic or issue;
• belittling others who express an opinion on the issue;
• statements about needing more faith or not having enough faith;
• angry or sarcastic to care recipients or spouses/partners;
• blaming others, esp the care recipient;
• finding yourself faking interest, being inattentive or bored frequently; or
• doubting information beyond what is reasonable.
So… What do I do??
There are some things that are good interventions, regardless of the cause, and there are some things that are cause-specific. Let’s look at a few specific items first, then explore some general things:
Secondary trauma: If you find that you are suffering from any of the criteria given under the description above (nightmares, hypervigilance, flashbacks, inability to concentrate, avoidance of certain types of environments or situations related to a traumatic event or series of events), seek professional help. Secondary trauma can be very disruptive to our lives and to our ability to care for others, and can impair our good judgment. While many trauma responses will resolve themselves over time, please don’t compromise your own safety or that of someone who depends on you- get help. A good place to start might be to check and see if there is a social work department attached to any of the caregiving supports that you currently access- most hospitals have social workers or chaplains who can speak with you and help to figure out a next step. You can use the national professional websites of the American Psychological Association (apa.org) or the National Association of Social Workers (helpstartshere.org) to locate a therapist to talk to, or you can contact your local Area Agency on Aging or other community action committee to identify low-cost or free resources to help you work through the trauma.
If you ever feel that you are under such strain that suicide or harming someone else becomes an option- seek help immediately. Do not wait.
Burnout: Since burnout is related to environmental pressure, intervening to stop the spiral downward involves addressing the pressure itself. Here are some things to consider:
• Allow others to share the burden. Sometimes we are unable to enlist others to assist (especially in families who live at a distance), but other times, we simply decline out of what feels like simplicity- it’s often easier to do something ourselves, we think, than to owe someone or feel indebted- or to try to teach the skill to someone else. However, when we do this, we take on the burden and carry it alone. Allowing others to share the burden is not a sign of weakness and can have excellent long-term results.
• Use respite and treat yourself to some personal time. That is why respite is there, and personal time is absolutely necessary to replenish our resources on a personal level. Think of stress as a giant bucket; every day, you keep filling the bucket; if you never take a time-out to empty the bucket, it will overflow- then you have a real mess on your hands, right?
• Seek out resources to make the job easier, whether it’s a specific bed, a ramp for the back door, walkie-talkies that will let you move to other rooms without fear, or sitters. Find a message board on a website like this one, a social worker, community advocate, nurse, or volunteer to help you locate what you need and make it happen. You’d be amazed at how many resources are available to people, and how many you probably don’t know about!
Overall self-care for compassion fatigue:
• Learn and name it. Research tells us that the best protection against compassion fatigue is education- so by learning something about the risks and thinking about what you can do, you’ve already done something to protect yourself!
• Be gentle with yourself. We all make mistakes. We all make poor choices sometimes. Asking for help is not a sign of weakness, and neither is feeling worn out or exhausted.
• Tend to your own health! This means not only going to your own medical appointments (like an annual physical, a yearly mammogram or prostate exam, and cholesterol and high blood pressure checks) and taking your own medications as prescribed, but also getting enough sleep, exercise, and nutrition. Very often, caregivers can name every pill that their care recipient takes, in what dosage and how often, can name every appointment that they’ve had for the last year, but can’t tell you what their own cholesterol level is, or when they had their last doctor’s appointment.
Here’s a quick quiz:
- Do you know your normal blood pressure? When is the last time you checked it?
- Can you name the last date that you had a physical exam? Was it within 2 years?
- If you are over 50 years old, have you had a mammogram or a prostate exam in the last 3 years?
- How often do you eat a complete meal?
- How often do you exercise or take a walk?
Think of self-care as preventative planning.
Ask yourself what would happen if you had a heart attack this afternoon, or if you got terribly sick. Who would caregive in your place? When we travel on airplanes, the flight attendants tell us that in the event of an emergency, we are to place our own air mask on before assisting others, even our own children. The reason for this is simple and straightforward- you are of no help to others if you can’t function yourself. If you don’t take care of yourself, you will wear yourself down until you have nothing left to give. What good are you then? On the other hand, if you take time for self-care, you will have more energy and better mental and physical reserves with which to provide for others.
If your own self-care has fallen off of your radar screen, there are some tools that you can use to remember and stay on track. Health logs (or health passports) are little books to keep records of your own health status, appointments, and medications. These are valuable items, not just for your own recollection, but in case of emergency, these logs can provide critical information that your loved ones may not be able to provide for you. Here are a few places that you can find record logs like this for both you and your loved one (I don’t endorse any of these, but rather provide them as examples):
There is no shame in experiencing compassion fatigue. Understanding what is happening is the first step in healing, and by taking preventive measures of self-care, you can preserve your most valuable resource- yourself.
For more information:
Caregiving for Veterans (although it’s a very helpful and public site): http://www.caregiver.va.gov/
Figley, C.R. (2002). Treating Compassion Fatigue. New York: Brunner-Routledge.
AMA (2005) Making every moment count. Women Physician’s Congress. [Electronic source] Available at http://www.ama-assn.org/ama/pub/category/print/ 8257.html
Saakvitne, K. & Pearlman, L. (1996). Transforming the Pain: A Workbook on Vicarious Traumatization. New York: W.W. Norton & Company
Regehr, K. (2005). Bringing trauma home: Spouses of paramedics. Journal of loss & trauma, 10(97).
Roberts,S., Flannely, K., Weaver, A. & Figley, C. (2003). Compassion Fatigue among chaplains, clergy, and other respondents after September 11th. Journal of Nervous & Mental Disease, 191(11).
For trauma resources- http://www.giftfromwithin.org.
HRSA’s health passport: http://www.ask.hrsa.gov/detail_materials.cfm?ProdID=3459