There’s a metaphor often used when talking about caregiver stress that you’ve probably heard: “Put your own oxygen mask on first”. It seems simple, and the message is clear: you need to take care of yourself if you are going to help anyone else. Simple, right?
And yet the experience for most caregivers is hardly as obvious and immediate as an oxygen mask dropping from the ceiling. If something like that were to actually happen, I bet you would know what to do. But the reality is often much less obvious when you start caring for a loved one.
The metaphor of a frog in warming water that doesn’t realize it’s starting to boil is more apt in many ways.
The story of your loved one’s illness is often a slow-building mystery at first. He or she doesn’t feel well and has some symptoms. You go to the doctor. The doctor orders tests. You get the tests done, wait for the results, and go back to the doctor.
Sometimes it’s not clear what’s wrong. Sometimes you’re referred to a specialist, then more tests, and more waiting and more doctors. Your loved one isn’t getting better, and gradually, over weeks and months, you take on the role of caregiver, scheduling assistant, nurse, etc. on top of everything else you normally do.
Perhaps when there’s finally a diagnosis that could have been the oxygen mask moment—the moment that practically hits you over the head to take care of yourself. But in reality, it isn’t. It’s actually the moment when you are most focused on your loved one and least on yourself.
They just got a diagnosis that isn’t good, and there’s a lot of practical figuring out what to do next. Quite naturally, all of the attention is on them, not you. This is the moment they need you most and not the moment you say, “Oh, hey honey, I’ve been thinking I need to take better care of myself”.
Instead, you’re bowled over and frightened, just taking in what all this might mean. You feel a call to action, you rise to the moment, you start making plans, etc. And so it goes… the oxygen mask moment never comes.
The oxygen mask metaphor also fails because it’s not just your physical needs you need to take care of— although that’s a good place to start. As your loved one deals with their illness, you’re there to provide support and encouragement. You are doing everything you can to be a physical support and emotional aide, attending appointments while continuing to work and taking on all the things they can no longer do. Any thought of doing less feels selfish.
Your values of what it means to be a loving, caring partner in life practically demands doing it all. Demands being selfless. That’s what a good wife/husband, mother/father, brother/sister, friend should do, right?
Or you may think, my loved one is sick, every moment with them is precious and now someone is suggesting I take a day off? And so it goes on, you keep choosing to attend to their needs over your own, make every moment count and slowly you begin to burn out and fall apart.
You’re not getting enough “oxygen” but you may be too tired and spent to realize it and the thought of doing something for yourself triggers feelings of guilt.
Slowly over time, not only are you becoming physically exhausted but you’re also losing yourself. Resentments begin to build triggering more guilt, “I shouldn’t feel this way” you think. And yet you do. And let me tell you, even though it feels like it, you are not alone.
What is Caregiver Burnout?
More than just a difficult or stressful day or week, caregiver burnout is when the passion and commitment you have caring for a loved one slowly dies.
The core feature of burnout is physical and emotional exhaustion. You experience starting the day already feeling drained and generally unwell.
Burnout also entails feeling distant from the person being cared for, what’s called “depersonalization”. Feeling numb and detached from someone you once felt deep love for.
There is also cynicism, resentment, impatience, and irritability.
You love them, but sometimes when they forget to do the thing they are supposed to do or do the thing they are not supposed to do, you just want to kill them! Add to that the faceless, callous medical and insurance industry, and your sense of efficacy is lost. Nothing you do seems to matter.
All you are doing can be undone in a day, and you start to question “what’s the point?”.
Signs of Caregiver Burnout
Burnout develops gradually over time. The constant rollercoaster ride of anxiety and stress, going from appointment to test, to test result, and then yet another appointment, takes its toll.
The first sign may be simple emotional and physical exhaustion. You wake up feeling tired and not looking forward to the day and all that needs to be done. Add on hours on the phone scheduling appointments and dealing with insurance, and the cynicism begins to seep in. At times, it seems the medical system is purposely designed to thwart your efforts to get help. You start to lose faith in the medical providers who are supposed to be helping.
Along the way, you increasingly feel indifferent and numb not only to your loved one’s suffering but your own as well. As a result, your own health suffers too.
You’re not exercising or eating well. You feel trapped and resentful being in this role and then guilty and ashamed for having these feelings. You start to withdraw from family and friends, feeling more and more isolated. Many turn to alcohol or sedatives or unhealthy food habits to cope.
Many believe it’s just them, that they are failing where others would succeed. This only increases the feeling of isolation and shame. Yet the reality is what your feeling is not at all uncommon.
The reality is in the US, family caregivers provide the majority of care for people who are sick but also have the least amount of preparation and experience to do it.
Surveys find nearly two-thirds of family caregivers report high emotional stress and nearly half report heavy physical strain and emotional burden. A third also meet diagnostic criteria for depression or anxiety disorders.
Caregiving to Someone With Chronic Illness
Having worked in medical settings as a health psychologist for more than 20 years, I’ve seen the impact of caregiver stress both from the caregiver side and the medical provider side.
Suffice it to say, pretty much everyone is frustrated with the US medical system and how care is delivered. When you arrive for an appointment, the focus invariably is on the patient who is ill with little concern for the caregiver who also comes along.
It’s not that the doctor doesn’t appreciate that you are there. Not at all! They know you’re the best hope that the tests and treatments they order actually get done. The truth is they’re relying on you and often speak directly to you.
Yet with only 15 to 20 minutes before they have to see the next patient, the doctor is not about to ask “how are you doing?”. Yes, logically, you’re not the patient, but they also sense asking about you would open a can of worms they don’t have time to address, and so they just hope you can keep going doing what you’re doing. And, after all, no one is asking how they are doing either… (spoiler alert: not great).
The reality is caring for a loved one is a bigger job than any one person should take on. A popular book for families caring for a loved one with dementia is titled “The 36-hour Day,” which pretty much captures the size of the task.
Unfortunately, most caregivers don’t realize how big a job they have taken on until deep into it and feeling the strain. Sadly, many caregivers feel something is wrong with them, that somehow they should be able to do it all. That doing it all is some kind of litmus test of their love.
You don’t realize caregiver burnout is relatively common and likely inevitable if you don’t do something about it. The first step toward a solution is fully appreciating that anyone who is in the role of primary caregiver is at risk and needs to pay attention to it.
How to Prevent Caregiver Burnout
Probably the first and most important step is recognizing that you haven’t failed if you need time and space for your own needs.
So often I hear caregivers worry that if they take a moment to breathe and rest that they are being selfish. But what is often glaringly obvious is rather than being selfish they are being too selfless. Selfishness is defined as only caring for yourself, with little regard for anyone else.
What I see in my practice again and again is a caregiver who is only thinking about their loved one with little regard for themselves—the exact opposite.
Caregivers also often believe that they are the only person who can help. They think no one else possibly can, or even wants to help. Sometimes your loved one plays into this too, rejecting the help of others.
Playing into this belief sets you up for feeling trapped and resentful. It’s a kind of resource short-sightedness and the reality is there are often many sources of support. Family and friends who want to help if only they knew what was needed.
How Therapy Helps With Caregiver Burnout
Seeking therapy is the first and probably the hardest step in healing caregiver burnout. At the most fundamental level, therapy will provide a regular, confidential, non-judgmental block of time every week simply to look at your own needs, process your feelings, and figure out how to move forward.
It’s an opportunity to step out of constant problem-solving and doing mode and take a moment just to be with yourself in the moment.
Mindfulness and somatic therapy techniques work with your inner felt sense to get in touch with all that is felt but unarticulated. It offers the opportunity to directly experience the strain of caregiving and work through the difficult feelings like anger, guilt, and grief you may be holding inside.
Along the way, it’s important to recognize that you are not responsible for your loved one’s illness. You didn’t cause it, and it’s the last thing you would want for them. When you let go of this responsibility, you free up energy to be present and compassionate for their suffering.
Given that the task is so big, therapeutic strategies from Acceptance and Commitment Therapy help clarify where to best put your time and energy in a way congruent with your values. Your time and attention are the most valuable thing you have to give, and so it’s important to optimize when you spend it to have the most meaningful impact.
In Closing: Asking for Help is Wisdom, Not Weakness
While it may be hard to admit, taking some time for yourself is probably one of the best things you can do, not only for yourself but for your loved one as well.
Will it magically make their illness go away? No.
But it will allow you to work through your feelings and show up in a way that is authentic and meaningful. If these weeks and months are potentially some of the last you will have with your loved one. How do you really want to show up?
I invite you to set up a free 20 minute consultation to discuss the particulars of your situation and see how I may be of help.