Strategies, tips, and information to better your life from John Coyne, PsyD

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.

Jim, who has inflammatory bowel disease, has been to the emergency room multiple times due to debilitating pain. Naturally, he was anxious about the possibility of another flare-up, and his anxiety intensified when he was far from the emergency room. With any inkling or twinge in his gut, he would drive to the emergency room to sit in the parking lot “just in case.” Sitting in his car, he felt a sense of security, knowing that help was readily available. As his anxiety eased, he felt safe enough to drive home, but he began to worry about the possibility of an attack when he was home at night. His home wasn’t close to the hospital, and he began driving to the hospital parking lot at night. Sometimes even sleeping in his car. Again, he felt a sense of security, that if pain struck, he could get help quickly. But he also started to feel less and less comfortable at home. He started sleeping in the ER parking lot more and eventually decided to rent an apartment close to the ER. That helped his anxiety, but he felt less and less comfortable venturing out away from his home. He stopped going to the grocery store, ordering online instead, and stopped visiting family, asking them to come visit him. As his life became more and more constrained and with the encouragement of his family, Jim finally sought professional help. What is Health Anxiety? Health anxiety is when normal concerns for one’s health turn into a fear of illness that takes on a life of its own. The story of Jim is a more extreme case but is an example of how anxiety can begin to reshape your life in dramatic ways. Technically, this is known as Illness Anxiety Disorder. In the past, it was called hypochondriasis—from the Greek meaning below the lower ribs, or in the gut—literally a “gut feeling” something is wrong. Back in the day, hypochondriasis was also associated with hysteria, a disease associated with women who presented with mysterious physical symptoms. The theory at the time was their uterus (hystera in Greek) was out of place. As bizarre as that sounds, it was the explanation at the time, and we would later realize that those women suffered from sexual trauma and dissociation. But even as our understanding advanced, the terms stuck around far longer than they should have. Today, the terms have changed to remove the pejorative meaning and to treat the condition for what it is. Like it says on the tin, Illness Anxiety Disorder is simply anxiety about your health unrelated to an actual physical condition, lasts for six months or longer, and leads to significant impacts in your day-to-day life. The Health Anxiety Worry Loop Anxiety, in general, is very motivating. It comes with a sense of urgency. You feel as though you need to do something now or something terrible will happen. In the case of health anxiety, the no-good, terrible thing is some disease such as a heart attack, cancer, stroke— you name it, the possibilities are endless. Unfortunately, so are the sources of information. There’s Google, various forms of AI, Reddit, Facebook, YouTube, etc. The more you look, the more the algorithm serves it to you. No wonder we’re all getting more anxious! With all these possibilities at our fingertips, it’s easy to get caught up in an anxiety loop — where one thing spirals to another, asking yourself, “Do I have this? Am I okay? What if I miss something?” A simple Google search to check one thing can fall into a rabbit hole of “research,” consuming hours of your time, often leaving more anxious and less assured in the end. When Health Anxiety Comes From a Real Illness Health anxiety gets more complicated when you actually do have a medical condition that you’re coping with. When this is the case, it’s natural to be worried about your health, especially if the condition is serious. It would be strange not to be worried in this circumstance. Here, it can be hard to draw a line between rational concern and irrational fear. We often don’t realize we’ve fallen into fear until we’ve crossed far over the line. Some clues that you’ve crossed over are compulsive checking, going back to your doctor repeatedly for the same thing, not feeling any reassurance when your symptom is explained, and a worse condition is ruled out. How to Manage Health Anxiety (That actually works) The challenge with anxiety is seeing it for what it is: the fear of something bad and not something bad itself. Fear is the brain’s signal to seek safety, so it can be hard to sit with it without reacting. Mindfulness and somatic approaches to therapy can help you “keep your seat” in the midst of fear and begin to hold difficult physical sensations without overreacting. Acceptance and Commitment Therapy can help recognize when the solution has actually become a problem. Over time, you begin to recognize and ultimately befriend your anxiety. Recognize when you are triggered and discern what really needs your attention and what you can let pass. Don’t let anxiety rule your life. Untreated health anxiety is exhausting. With therapy and practice, you can begin to grasp its true nature and stop anxiety from taking you down rabbit holes, feeding anxiety, and leading you into dead ends. As you change your relationship to anxiety, more time and energy will become available to address your real needs. To explore how therapy may be of help to you, schedule a free 20 minute consultation .

Sleep is one of the most important factors in physical and emotional health. Often when I see someone struggling with illness, caregiver burnout, or anxiety, getting better sleep is one of the first areas we need to address. The importance of sleep has been known throughout the ages. These lines from Shakespeare from over 400 years ago say it well: "Sleep that knits up the revell’d sleave of care, The death of each day’s life, sore labour’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast”. If you are struggling with sleep, you are certainly not alone. Roughly a third of Americans do not regularly get the recommended amount of sleep, and about 12% are diagnosed with chronic insomnia. Various over-the-counter sleep aids and prescription medicines are almost a $ 100 billion dollar industry. If you’ve tried any of these, you may have also discovered the sad truth that they are only a temporary fix and long-term often have the unintended consequence of making sleep worse. You’ve probably heard about “sleep hygiene”, everything we do to promote a good night’s sleep, but you may not have heard about CBT-I. What is CBT-I? (aka Cognitive Behavioral Therapy for Insomnia) CBT-I is a structured, evidence-based approach, distinct from generic “sleep hygiene” advice that works with the negative thoughts and beliefs about sleep, retraining your association of the bed and bedroom with sleep, consolidating the time in bed so you begin to sleep consistently, and then gradually expanding the sleep window until you achieve your sleep goal. Along the way, you regain confidence in your ability to sleep and can handle the inevitable hiccups and disruptions of sleep without getting completely thrown off track. CBT-I or medication — Which is right for you? Many people wonder why not take an Ambien or over-the-counter sleep aids if they know it works. While effective short-term for sleep, the problem is these medications interrupt the normal sleep structure that is important to brain health and memory. Long-term use of over-the-counter antihistamine medications for sleep is found to be implicated in the development of Alzheimer’s disease. CBT-I is considered the gold standard for insomnia and a first-line approach that promotes the body’s natural ability to sleep and all the important functions that go with it. What to expect in Cognitive Behavioral Therapy treatment for Insomnia CBT-I begins with a structured interview to assess the nature of your sleep difficulty. Are you having trouble falling asleep, waking up in the middle of the night and not getting back to sleep, waking too early, or a combination of the above? Typically, treatment spans 6-8 sessions, first tracking and identifying your pattern of sleep, adjusting routines and behaviors to promote sleep, addressing counterproductive thoughts about sleep, and developing a sleep constriction schedule. Sleep constriction turns the problem of insomnia on its head. Rather than trying to force yourself to sleep, you need to stay awake until it’s time to sleep instead. Along the way, sleep drive, the pressure you feel to sleep, naturally increases, reinforcing your body’s natural mechanism. Sleep onset, structure, quality, and consistency all improve, and you begin to regain confidence in your ability to sleep. As the consistency improves, you can begin to increase the length of time until you are sleeping somewhere between seven to nine hours a night, waking up feeling rested and restored. What is your insomnia really caused by? Insomnia rarely shows up as a standalone issue. Often there are other contributing factors such as physical illness, caregiver burnout, anxiety, or grief that need to be addressed concurrently. Improving sleep can often go a long way toward improving an individual’s ability to cope with challenges they face day to day and is a critical component for improving your emotional and physical health. Don’t ignore problems with sleep One or two nights of poor sleep may not be a concern, but ongoing difficulties with sleep need to be addressed for your own physical and emotional well-being. Many practitioners know the basics of sleep hygiene, but not all are trained in CBT-I. If you are interested in learning more about how this approach may be of help to you, schedule a free initial consultation so we can talk more about your particular situation.