“I’m never sick,” Sally said. She was nearly 70-years-old and said she had never even had a cold. She sat off to the side while her husband, Bob, was reclined on the ER gurney. Bob had been feeling weak for several days and went to his physician for a checkup. Routine laboratory studies showed that his red blood cells, white blood cells and platelet counts were low. Bob’s bone marrow was likely being overtaken by a type of cancer called MDS – myelodysplastic syndrome.
Sally claimed to be invincible, but was she living in the real world? Bob had been a smoker most of his life and had heart and lung disease. Had she been immune to the impact of his disease throughout their marriage? Would Bob’s new diagnosis of cancer make her sick? Illness spreads insidiously and is generally contagious. Sally seemed gripped by her denial.
Denial is a functional coping tool that is often necessary for caregiving. It can lead you to believe that MDS is not life-threatening and that it won’t affect you. Denial can allows caregivers to pretend that the medication is not chemotherapy and that their patients will get better. You might not even see the toll that the medication or disease process is taking on your patient. Denial works well until the situation is no longer manageable and your patient ends up in the ER.
The following four tips will help you work through and better understand the coping tool of denial:
Denial is a way of coping with stress. The thought of being under stress annoys most people. It puts you in a bind. If you admit to being overwhelmed as a caregiver, you may be asked to give up some control over the situation. You need to remain strong so as to not appear weak and make your patient worry more. You might spend most of your day pretending that you are fine, while suffering in silence.
Stress is a sickness that eats at you from inside. It suppresses your immune system and triggers inflammation in the body. It can cause a heart attack and other disease. Stress is a silent killer that sometimes masks as hypertension, headaches, shortness of breath, or abdominal pain. When people just don’t feel well for no particular reason, stress is likely the cause.
Because of the strength of denial, stress may not be as obvious. Observe how you respond to others who might question the amount of stress you’re under. Do you tend to laugh it off or protest the question? Are you open to having the conversation about your struggles? Are you doubling down and compounding your stress? What example are you setting for your patient?
How might you deal with denial? While dealing with stress, the inclination is to bury your head in the sand and ignore it. However, caregivers who look after patients rarely get a break from experiencing one upset after another. With any chronic illness, there is always something not right that needs to be handled.
While on duty, caregivers often confront various types of emergencies. This is the best opportunity for you as a caregiver to face the facts. How manageable is the situation? Nevermind how it was before, how is it now? What resources are available that you’re not using? How much is denial stopping you from accessing them?
Your credibility as a caregiver becomes suspect if you’re in denial. As Sally claimed she was never sick, can she be taken seriously? Can she be trusted to know how to handle Bob’s illness when it worsens? Does she picture her state of heath as being the same or different from Bob’s. You are no longer in denial when you can truly acknowledge your patient’s illness and stress as being your own.
Denial is a form of imaginary thinking. Imagination allows your thoughts to run wild. As a caregiver, an act of careless abandonment of your patient is out of the question. Yet letting go of stress serves your patient. You may not feel the tension of caregiving, but are you able to relax and reward yourself? Do you have time to doing something good for yourself on a daily basis or are you too busy?
Caregiving can feel as though you’re trapped in a pressure cooker. This becomes an explosive situation and detrimental to those who engage with caregivers. Many people prefer not to be around those who are upset or dealing with stressful situation. Caregivers often feel like they are living in isolation.
If Sally prefers to perceive her health as different from Bob’s, she must create separation during the caregiving ordeal. Bob needs to respect and accommodate the time and care she needs for herself, including proper nutrition and exercise.
Caregivers often gravitate to comfort foods that are toxic to your system and cause more inflammation. You need to focus on eating more whole foods like vegetables and grains that fuel your body effectively and aids your sense of well-being.
Exercising and stretching helps identify tension in your body. You can no longer deny stress once you experience being inflexible or out of breath. Exercise allows stress to move out of your body and releases endorphins that help you feel better.
Making time to do the things you love lifts your heart. Whether it’s shopping or going to a movie, attending church or a support group, taking a walk or a trip, you deserve to reward yourself. As you begin to count your blessings each day, you lessen the feeling that time is being taken away from you. If you need more time, you are not taking enough time for yourself to enjoy life as a caregiver.
Denial can allow you to better cope with stressful situations. But it can sabotage your life and the care of your patient if you choose not to deal with the reality of being sick. Once you have a firm grip on the coping tool of denial, you can better manage your stress.
“Belinda had a seizure,” according to her husband, Ron. He heard a loud noise and ran to check on her. She appeared to be convulsing – Ron immediately called 911. When EMS arrived, Belinda was awake, and claiming that she just passed out from the stomach flu.
While treating Belinda in the emergency room, the physician felt trapped in the middle of “he said, she said.” Belinda had never previously had a seizure so this required more investigation. The paramedics recorded normal blood sugar and blood pressure at the scene. She had a lump and small cut on her head. Belinda had used illicit drugs in the past, but had been clean for two years.
As a caregiver, Ron felt strangely at odds with his wife. He wanted to protect her privacy while being certain the doctor had all pertinent information. How Ron handled this situation could be crucial to Belinda’s diagnosis and well-being. Without preparation, he might simply forget information or sway the doctor’s impression.
Consider these five tips to avoid common mistakes made by caregivers during emergencies:
Expect Common Things to be Common
Chances are you’ve heard of many medical conditions. You may not be familiar with people who have seizures, but it’s a common diagnosis. Common experiences provide immediate reassurance in emergency settings. The medical staff can manage seizures, which allows caregivers to worry less.
Caregivers often become hung up on certain words or diagnoses that often trigger undue stress and confusion. As a caregiver, you need to decide upfront if you intend to make the situation better or worse. The sooner you can put your mind at ease, the more you can work with the physician in being certain of the diagnosis.
Don’t Jump to Conclusions
Just because someone suggests a diagnosis doesn’t mean it’s certain. Both physicians and family caregivers need to keep an open mind when new medical conditions arise. Keeping an open mind until the evaluation is complete serves your patient’s best interest. If Belinda had a history of seizures, her having another seizure would not be unexpected.
Trying to keep an open mind while forgetting that you know anything is hard for caregivers who might be used to micromanaging their patients’ care. Knowing your patient, you have credibility in expressing when something is wrong. Are you able to hold back from expressing your opinion until the physician formulates his or hers? Your expectations might trigger the physician to treat your patients without having all the necessary facts.
Be Able to Tell Your Patient’s Story
Your patient has his or her side of the story while you have yours. As the caregiver, make sure you correct any misstatements and avoid speaking for your patient. Your patient might ramble, but it’s important for you not to confuse the physician. While listening, your goal is to be able to put the story in a nutshell. It helps to be concise by following these three steps:
Every story has a beginning, middle and end. You need to start from the beginning and include the five W’s – the who, what, where, when, why. Who was there, what happened, where did it occur, when did it begin, and why did it occur? Relay the story without creating the ending.
By nature, caregivers are sometimes more emotional than patients. Patients tend to be stunned in the ER and often unsure why they are there. As a caregiver, you often know more about your patient than he or she realizes. The physician is more concerned about the present illness, current medications and pertinent past history. The more you stick to the facts, the better the physician will be at reaching the correct diagnosis.
You might have a hunch about what’s going on with your patient. Clearly, Ron was concerned that Belinda might be doing drugs again, but he was quick to praise her recovery. He demonstrated a knack for winning friends and influencing the physician, while sharing additional information.
Give Physicians the Benefit of the Doubt
Caregivers are naturally concerned about whether that the physician actually knows what he or she is doing. If you have questions . . . ask, don’t guess. Most physicians will listen to the story and might even repeat it to make sure of having heard it correctly. The physician will typically outline the course of investigation and may relay his or her working diagnosis.
Some caregivers tend to create a list of medical concerns along with tests that they think need to be ordered. These tests may or may not be relevant to the situation at hand. You may be inclined to have everything checked out and in the process, overwhelm the ER physician. You need preparation and presence of mind to not expect all your questions to be answered during an emergency visit – some doubts will likely remain.
Reach a Conclusion
Caregivers often leave the emergency department with more questions than answers – sometimes stating, “The doctor never told me anything.” In translation, this often means the physician and the caregiver never came to an understanding or agreement. You may not have a definitive diagnosis, but you still need to reach a conclusion about management and follow-up.
A CT scan of Belinda’s head and lab studies were determined to be normal. Did she have a true seizure or a jerking spell from hitting her head or passing out? The physician may not be too concerned about Belinda having a life-threatening situation. Nevertheless, has the caregiver drawn the same conclusion? What questions or disagreements remain? Like most mysteries and many emergencies, some situations are difficult to explain. Is this okay?
While caregiving, the goal of emergency preparedness is to be OK with any given situation. You will not achieve this until you condition yourself to believe it. This might be easier said than done, but many caregivers make the impossible becomes possible. The more confident you are, the more comfort you give others. Emergency situations call you to rise to the occasion and become more powerful than you ever imagined. The adage “What doesn’t kill you will make you stronger” is the take- home message that can prepare you for an emergency.