Jim was a 52-year-old ex-marine built like Adonis. He had no significant medical problems, but had been experiencing vomiting and diarrhea that he thought was a stomach bug. Jim was not big on going to doctors and decided to wait it out.
Jim’s wife, Kim, called 911 when she found her husband unresponsive. He was dead on arrival to the emergency department. The couple’s parents arrived immediately after the ambulance and were beside themselves, asking repeatedly, “How could this have happened?”
The answer to this question centered around Kim. She was the next of kin and had missed the “Caregiver’s Code Green.” Like a “Code Blue” that alerts hospital personnel of a patient who has stopped breathing, the “code green” supports a caregiver’s authority in making sure their loved one receives advance care when needed.
Kim was used to Jim being in charge and respected the premise that “What Jim says, goes.” While giving him the benefit of the doubt, she supported both Jim’s denial and supposed invincibility. Kim was torn between being his wife and stepping up as his caregivers. If she’d been given the green light to take charge of the situation, she would have insisted that Jim go to the ED sooner rather than later.
Just as drivers anticipate the traffic light changing from red to green, family caregivers need to be prepared for the Code Green. This code is the call to action for caregivers to STOP! LOOK! LISTEN! FEEL!
Learn how to stop being passive and follow your intuition by using these tools:
Don’t deny the situation and get angry. When you care deeply for another, his or her thoughts and actions do affect you. Medical illness not only strikes your patient – it impacts your entire family. Deference is given to your patient, giving him or her what they want. But you need an equal respect for the illness in order to manage it effectively. When the buck stops with you, the “bunk” – a patient denying the illness – needs to be stopped by you.
As a family caregiver, your duty is to distinguish fact from fiction and not pretend that everything will get better. Begin to establish certainty about your patient’s medical condition and prognosis. Allow yourself to be angry and obtain realistic answers. You may become bossy in response to the patient becoming testy. Being bossy means you care. When given the green light to begin caregiving, you may be required to stop being nice and start acting in your patient’s best interest. You become distinguished as a leader when you stop being passive.
The Caregiver’s Code Green is not sounded at the life. This responsibility generally occurs in the “summer of caregiving,” when you least expect it. During the prime of life, the growing season, everything appears sunny and green. The days are long and you become energized by the sweet fragrance of success along with the impetus of full speed ahead! You are apt to become blinded by the sun until the eclipse occurs – your loved one being taken to the hospital.
Wait! What? Do your eyes deceive you or are you having trouble awakening to the new reality of life-threatening illness? You will need to come to terms with this illness before your patient is able to accept it. Believe it or not, all eyes are on your being in charge. Your “Code Green” triggers the response to get out in front of the illness rather than lead from behind. Look before you are driven over the deep end of denial.
Caregivers are focused on listening to their patients. Most people experience an awakening when they listen to their hearts. You may need to take what your patients say with a grain of salt and become skeptical. Are your patients hopes and dreams aligned with reality? Is the physician being realistic or overly optimistic? What you’re your own search for answers tell you? Do you want an unbiased opinion or do you prefer listening for what you wish to hear?
The metaphysical color of the heart center is green. When the Code Green is activated, you must fine-tune your listening skills – lending an ear to your heart. The Emergency Broadcast System has conditioned us to pay attention to the sound of its alarm and the words, “If this had been an actual emergency, you would have been instructed . . .” As a caregiver, you are inclined to take instructions from outside sources, but the best caveat is to listen to your own heart and trust your intuition.
A caregiver is blessed with a ‘mother’s intuition.’ This tends to challenge the perception that a medical degree is the end-all to physicians knowing everything. You are better in touch with your own feelings and those of your patient than a treating physician. This mutual exchange between you and your patient is referred to as empathy. Empathy allows you to say what’s on your mind and speak from your heart. You will never be faulted for using empathy to your advantage. Code Green implies acting from a call to duty.
Code Green allows you to act on a hunch or a feeling. You are not called to wait at that moment. Caregivers often say, “It’s better to be safe than sorry.” No one will fault you for playing it safe, but it’s difficult to forgive yourself if you believe that you have been negligent. Heed any distress signal your heart sends out. Recognize the pulsation of your heart as feelings and awaken to the messages they send. You cannot expect others to know what is in your own heart.
Like Jim, most patients use denial as a starting and stopping point with the prospect of life-threatening illness. This period of time calls you as caregiver to be on guard – to stop, look, listen, and feel. While waiting for the green light and opportunity to take the lead, plot out your strategy. Create an appropriate advance care plan in order to know where you need to go when your patient takes a turn for the worse and the light turns green.
Karl looked to be in the prime of life. He was 62-years-old with an athletic build and an easy-going personality. He came to the ER with his wife, Julie, for difficulty breathing. Karl had experienced a series of unfortunate illnesses that began with an ankle injury. Following surgery, he developed a flesh-eating infection that resulted in the amputation of his leg below the knee.
When Karl underwent pre-op testing, a chest X-ray showed lung cancer. Karl had been receiving chemotherapy following ankle surgery until this treatment destroyed his bone marrow’s ability to produce red blood cells. Karl was prone to anemia and had been receiving periodic blood transfusions.
Karl’s lung cancer created a pleural effusion, or fluid collection, between his left lung and chest wall. This new finding on his chest X-ray indicated that his cancer was worsening. During the summertime of caregiving, many medical conditions, like flowers, bloom at the same time. During this stage of life, patients feel as if they’re bombarded by an onslaught of medical problems. Karl maintained a strong will to live, but interspersed in his season of summer were emotional thunderstorms.
Caregiver’s can best handle the onslaught of multiple medical conditions with these tips:
Karl was near death, but did not feel or look as though he was dying. Yet, the ER doctor thought it was important to give Karl the option to either have the fluid drained from his lung cavity or allow natural death. Julie immediately perceived where this conversation was going and knew Karl was not ready to give up. She spoke up on his behalf and claimed, “We’re not there yet.”
As a caregiver, you need to be proactive and sense what is most important to your loved one. Your day- to-day interaction with your patient provides clues to his or her level of commitment. Although Karl was nearing his final days of summer, he was still able to enjoy life and did not appear to be suffering.
Julie’s stand to defend Karl’s desire to live demonstrated her commitment to him. She had his back. As an effective caregiver, your ability to be a mind-reader will earn the respect of your patient. You must be less committed to one way of managing the situation, while remaining open to the treatment your patient prefers. Your patient’s ability to trust you will better serves your ability to guide the situation through the remaining seasons of caregiving.
Prune back co-morbidities
Co-morbidities are medical conditions that pile up and add to your patient’s suffering. Having a leg amputated is a tragic life event, yet that was Karl’s least concern now. His progressing lung cancer was cutting his days short along with his breathing. If Karl intended to thrive during this stage of life, he would need to declutter his life of treatments/medications that him feel ill.
Caregivers are prone to worry about almost everything. You need to train yourself to trim the overabundance of medical issues based on what your patient choose to focus on. If your patient refuses to follow his diabetic diet, managing his diabetes becomes less of an issue. The “end of summer” is a good time to cut back on unnecessary medication and cancer screenings that challenge your patient.
Sick patients often claim that they have no medical problems while caregivers roll their eyes. These patients are still in the summer of their lives. Managing your patient’s medical conditions allows him or her to live fully. Your ability to roll back any unnecessary burdens helps lessen the oppressive dog days of summer.
Use plant food for better stamina
Fresh fruits and vegetables are in season during the summer and need to be a staple in your meal planning to boost your vitality. A healthy diet supports patients with chronic illness.
Many caregivers share the same food plans as their loved ones for convenience. But this bond also reminds caregivers of the need to take care of themselves as they care for others. Leading by example demonstrates that you are in this situation together.
Patients often live healthier lives following a life-threatening medical condition. This might appear as a last-ditch effort or last hurrah. Make the most of it and let your patient enjoy more time in the sun. Spend time eating outside and connecting with nature. Promote sunset strolls and be certain you both get plenty of rest. Plants teach us what we need to thrive.
Provide adequate water
Water is vital to life and an important part of summer fun. Not only does it hydrate our cells, but it also feels great on our skin. Encourage your patient to take a refreshing shower or bath daily. Drinking six to eight glasses of water per day needs to be readily available and easily accessible.
Water naturally fills any empty spaces and typically soothes pain. It provides direction to either go with the flow or swim against the current. People feel buoyant in water and lifted to a more carefree existence. Having the ability to float only occurs when you and your loved one learn to let go. A sense of calmness and rejuvenation will ensue.
Summer rainstorms and thunderstorms are part of life and create the opportunities for cleansing along with an awakening. There is a period of upheaval followed by assessment in the aftermath. After Karl had the fluid drained from his lung cavity, he could hit the shower and begin life anew with a different perspective of his cancer being worse. Water has inherent surface tension and hydropower. Having enough exposure to water will provide Karl the wherewithal to reset his priorities as he enters the next season of life.
One man’s summer is another man’s autumn. While Julie respected Karl’s desire for an endless summer, her overall goal was to have Karl appreciate all four seasons of his end-of-life journey. Few people wish for summer to end and winter to begin without experiencing autumn. “We’re not there yet” meant that autumn may not occur happen in Karl’s lifetime. Julie should ensure that Karl enjoys summertime as well as harvest time.
As Ryan sat at his desk, it seemed like any other workday — until he felt a sudden wave of pressure in his chest. He took a couple of deep breaths, hoping it would pass, but the pain began to radiate into his left arm. Just 45 years old and slightly overweight, Ryan wondered if he could be having a heart attack. He didn’t want to overreact, nor was he eager to have his day disrupted.
Five minutes passed. The pain was unrelenting. He told his boss he was going to the emergency department to be evaluated. He arrived safely and an EKG was performed at triage. He was rushed to a room and told he was having a heart attack. Ryan seemed shocked and felt shaky — destabilized by this unexpected crisis.
Emergency staff swarmed into his room to start IV lines and administer pain medication and aspirin while the physician explained that preparations were underway for him to go the Cardiac Cath Lab. A cardiologist would run a catheter from his groin into his heart and inject dye into his heart arteries. Once the blockage was identified, a stent would be placed to restore blood flow to the region of Ryan’s heart that was compromised. Ryan felt degraded; he struggled to accept his vulnerability and the reality of his mortality.
After the procedure, Ryan was admitted to the ICU in critical-but-stable condition. He felt his life had been destroyed with this heart attack. He could no longer brag about being in good shape and enjoying excellent health.
With similar tactics to disrupt, destabilize, degrade and destroy, a life-threatening illness presents as an act of terror — an awakening for both patient and caregiver. The caregiver can either engage the fear or counter the terror.
The following advance care tools will help caregivers combat fear and promote recovery:
Anxiety acts as a disruptive force; fueling the release of adrenaline while creating a state of panic and helplessness. Your best defense against this powerful force is to keep telling yourself to keep calm. Remind yourself to take deep breaths or count to 10. Exhale with the force to blow out a flame or soothe a burn. This is not new information, but it’s another opportunity to apply this tactic to a new situation.
Life-threatening situations call for rapid responses. Your goal is not to accelerate your heart rate, but to keep your wits about you. How rapidly can you lower your heart rate, focus your mind, and return to a steady state of composure? Is this something you practice daily and carry in your virtual toolbox?
Disruption often leads to poor decision-making. If you’re off your game and lack self-control, you could falter. You reach the top of your game through the starting point of composure. Making rational medical decisions depends upon your ability to listen and be reasonable. You need to quiet your mind so you are able to be attentive and understand the information provided by the physician and nurses.
The best tool a caregiver has at his or her disposal is the ability to maintain self-control. Your demonstration of competence becomes a stabilizing force for your loved one. Competence is more a skill than the feeling that you know everything. Learning to appear competent helps you to “fake it till you make it,” gaining confidence as you help stabilize the situation.
Competence is believing in yourself. This core ability allows you to proclaim, “I’ve got this! I have my footing and know how to proceed!” This belief system isn’t innate; it’s an acquired skill. By applying discipline to shaky situations, you learn how to find balance through strengthening your core muscles. Stabilization, as a type of muscle memory, needs to practice through physical exercises that teach this principle.
“Steady as she goes” is a nautical tool to keep a ship on track. Medical decisions require caregivers to take the helm until their patients become stable. You can imagine turning over the ship to your patient once he or she reestablishes competence.
Upsets occur through the lack of commitment. Terror exists when walls come tumbling down. As your loved one collapses with a life-threatening illness, your immediate reaction is to prop him or her up. You raise patients’ spirits and lower stress through providing them this type of “upgrade.” An upgrade clearly reflects your level of commitment to your patient’s well-being.
Your patient needs to know that you have his back … that you are there to catch him when he falls and to act as a type of safety net and springboard. As a gift to caregivers, Michele Obama left this indelible remark: “When they go low, we go high.” This statement of commitment is a powerful tool that serves to lift the heart of your loved one.
Patients tend to feel inferior to others. Caregivers have the power to treat them as loved ones. Believing that love cures all becomes the best medicine for your patient. Acts of love such as flattery, gifts, physical touch and time together will give your patient the feeling of having been upgraded and provides a much-needed boost to his or her ego during the catastrophic event or illness.
“What doesn’t kill you makes your stronger.” Make this phrase a motto for you personally while caring for your loved one in the aftermath of a life-threatening event. It’s the starting point from which to brush yourself off, move forward and rebuild. Caregivers need to act as leaders in the process of healing and restoration.
Spiritual restoration occurs through the elements of earth, air, water or fire. These energy sources are often used to help those who experience loss or grief. They are also associated with particular Zodiac signs:
Water signs: Cancer, Scorpio and Pisces
Fire signs: Aries, Leo and Sagittarius
Earth signs: Taurus, Virgo and Capricorn
Air signs: Gemini, Libra and Aquarius
Identify and connect with the best qualities of your zodiac sign. These driving forces can be the best advance care tools necessary for you caregiver to rise above the ruin. Your patient’s healing potential can be boosted by using his or her zodiac sign as a source of innate power.
Any life-threating event is followed by a new dawn and awakening. Advance care tools allow caregivers to welcome the new day as the new normal. Your strength of character will be tested during these moments. Your ability to rise to the occasion makes all the difference in your patient’s ability to heal and recover.
Despite wearing a patient gown, George was a distinguished-looking 72-year-old gentleman. He arrived in the ER with his charming wife, Jill, for difficulty breathing. George had end-stage lung cancer that was not responding to aggressive chemotherapy. He was also receiving treatment for congestive heart failure due to a prior heart attack. After the chest X-ray and lab studies proved inconclusive, did George wish to proceed with further testing and hospitalization?
The physician found evidence of the progression of George’s lung cancer, pneumonia, a blood clot in his lung, and a possible heart attack. Determining an exact diagnosis might offer George more time, but very little quality of life. The physician did not hold out hope as a reason to admit George to the hospital. George’s worsening condition meant that it was time to consider hospice. As George was not ready to cut his losses and return home, Jill would cast the deciding vote. As usual, the caregiver would need to determine the best course of action leading to happily ever after.
These three practical tips will help lead to happily ever after:
When there is a shortage of hope near the end of life, a caregiver needs to have some favorite things available to bring a smile to their loved one’s face. Photos of happy memories, a favorite wine, or good movies are a great ways to spend quality time together. Planning and saving for a rainy day is what responsible spouses do. They often become caregivers one day. For better or for worse, in sickness and in health, caregivers vow to stand by their loved ones. The ultimate purpose of having a hope chest is in anticipation of living happily ever after.
Hope often triggers caregivers to open Pandora’s Box rather than leaving well enough alone. Was Jill satisfied that George had fought long and hard enough or would the battle continue? Would determining the exact cause of his difficulty breathing change his overall condition? Did this situation warrant he stay in the hospital or allow him a break from further treatment? Might Jill be hoping for George to die in the comfort of their home? Replacing future dreams with fond memories in the hope chest eases the transition to let go of a loved one. This instills gladness instead of sadness at the end of life.
The value of a hope chest is that it’s portable and contains the “comforter” you need at a moment’s notice. Caregivers are often “not there yet” in making life-and-death decisions for their loved ones. This hesitation is a missed opportunity to make the best of a bad situation. Rather than making your patient’s wishes come true, being an ill-prepared caregiver means that you risk doing harm and living with regret.
It’s virtually impossible for family caregivers to not regret the passing of a loved one. Yet, caregivers need to figure out how to make the impossible a reality if they intend to live happily ever after. Most caregivers regret when a situation gets out of hand. They often think in hindsight that they could have done a better job of anticipating the upset and heartache.
Caregivers who love from their minds instead of their hearts tend to live in regret. The mind rarely fathoms doing anything less than saving a loved one’s life. The heart is steadfast in showering the loved one with unconditional love – an unbiased and unattached form of love. This altruistic and selfless love is at the heart of most physicians who care for patients equally and impersonally.
In matters of the heart, caregivers must remain in the middle ground of taking it or leaving it up to fate. While living in sorrow, caregivers often take unnecessary responsibility for what has happened. Were you really expecting to change your patient’s fate? Life and death happen and caregivers have little control over the matter. You only have the ability to take what has happened and appreciate it as being a chance to demonstrate love without regret.
You will never experience the depth of your love until you care for another person near the end of life. To live fully, you’ll need to have a good laugh and a good cry. Death is meant to be a sweet sorrow over a bitter agony. You may begin to plan for when you may see your loved one again, knowing that love never dies. Was Jill ready to love from the depth of her heart or would she hold out faith and hope for George to carry on?
The wonder of love is that you may not know how to you will respond at any given moment. Naturally, you must dig deep inside when called upon to let go. This selfless act will weigh heavy on your mind until you hear the calling from the echo of previous promise made by your heart – “I promise to love and honor you all the days of my life.” The depth of your love is hardly imagined and rarely tested in life. However, this needs to be a promise you make to yourself in your commitment to care for the well-being of another.
The sorrow you feel with impending loss is a testament to your love. Knowing full well that “it’s better to have loved and lost than never to have loved at all,” you will see that allowing a loved one to die is the fulfillment of this statement. Death being a rite of passage means that you need to make necessary preparation in anticipation. It’s an honor and a blessing to care for a loved one at the end of life. The gratitude experienced in the aftermath of being a caregiver can help you live happily ever after.
Jill rose to the occasion and encouraged George to agree to hospice. It was obvious that he trusted her with all his heart and felt blessed to have her support. The path to happily ever after is paved with good intentions and a loving caregiver.
“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.
Linda was aware that her mother, Rose, was not getting better. This was Rose’s third emergency visit in a month for shortness of breath. Rose was 86-years-old and had a bad heart valve that triggered congestive heart failure.
After Rose described her symptoms to the physician, Linda prompted her mom to speak up by saying, “We need to talk about this.” The physician picked up on the cue and asked Rose if this situation was hard for her. Rose was eager to share that she no longer had quality of life. Linda was eager to help her mother in the transition to end life, but didn’t know where to begin. Did Linda have a personal philosophy about caregiving?
Family caregiving is a noble, yet humbling experience. You’re at the mercy of those who need more from you, but who often want less. Linda didn’t feel comfortable with making decisions for her mother, but Rose was eager for Linda to help. Your best tool is to use reverse psychology: try not to play it smart. Establish humility at the outset through adopting a “pea-brain” philosophy. Patients expect little from know-nothing caregivers who have more questions than answers.
Playing dumb fools your patient into thinking he or she needs to maintain the upper hand. You become less of a servant and more of a supervisor. Your perceived pea-brain becomes a front to a more meaningful caregiver philosophy. The caregiver’s “P-brain” consists of being proactive, poised and parental. Caregivers who have “P-brains” are surprisingly gifted and less likely to disappoint. A caregiver’s philosophy needs to be geared toward success, not failure.
Incorporate these three aspects of the “P-brain” into your caregiving philosophy:
Being proactive, you can see 10 feet ahead and years down the road. The ability to see Rose struggling with activities of daily living and making medical decisions automatically puts Linda in the caregiver role. Seeing your patient declining leads to believing you can help. You can guide the process without telling your loved one what to do.
People who can tell what other people think are mind readers. Your patient is rarely certain about what he or she wants long-term. Before you can tell what your loved ones want, you need to be able to read their minds ahead of time.
In being proactive, you need to define caregiving before caregiving defines you. Caregiving will drown you until you learn to swim with the sharks, which will attack you from all sides. You have to be thick-skinned to ward off doctors’ orders and patients’ demands. As a caregiver, you need to be self-assured and self-defined through developing poise.
“Steady as she goes” is the art of being poised and a powerful asset for caregiving. Self-assurance tells others, “I’ve got this.” This does not mean you have all the answers. It simply means that you know when and where to ask for help. You begin to recognize being wobbly before collapsing. The following three rules will help you stay poised:
Frankness is a virtue. Being open and honest about your intentions will help with making medical decisions. Linda’s goals need to be consistent with Rose’s wishes. But the choice between merely staying alive and quality of life serves as a reminder that there can only be one best response.
Choosing between wishful thinking and a doable plan is the responsibility of a caregiver. Hope becomes a four-letter word when your patient’s medical condition becomes unmanageable. The next step beyond the hope of your loved one getting better is balancing the good with the bad. Being poised allows you to find the middle ground to viewing the end of life as strictly being bad.
When you give a little, you get a little. When you choose your own battles, you declare what matters to you. This is the art of compromise. An open-minded caregiver has the ability to roll with the punches. Your philosophy must align with creating a win-win situation.
Parents usually set the ground rules and tone of the conversation with their children. It boils down to saying, “Don’t talk to me like this. I’m not your friend, I’m your parent.” Like Linda, caregivers take on the role of parenting their patients. Parents don’t let their children make poor decisions. Similarly, caregivers can’t allow their patients to make poor medical decisions.
The parent-child relationship builds upon co-dependency. Each person has practical and emotional needs. Good communication skills are important in getting what you need out of the relationship. Ironically, getting out of the relationship becomes the ultimate goal for parenting. The “empty nest” must be anticipated as an opportunity for Linda to regain her life.
The best parents teach their children self-sufficiency. Spoiling your children can lead to their feeling helpless and acting whiney. By instilling confidence in your patient, you provide him or her dignity. Self-sufficiency gives patients the strength they need to feel independent.
Your caregiving philosophy needs to align with patient autonomy. Allowing your patients feel as if they are in charge serves their best interests and takes some of the burden off of you.
The ER doctor asked Tilly, a 96-year-old woman, what she wanted to do? She had COPD and difficulty breathing. There was no evidence of pneumonia on her chest x-ray and her lab studies were unremarkable. Did Tilly feel comfortable going home or did she prefer to stay in the hospital?
Carol, her daughter, gave her mother a chance to respond. Tilly thought she might like to go home and Carol rolled her eyes. Carol pushed the issue by stating, “Do you want to die?” Tilly quickly came to her senses after she angered her daughter, acting as her caregiver. Tilly promptly agreed to stay in the hospital.
What was Carol’s advance care plan for her mother? Did she intend to lighten up at the end or to create hardship for her mother? Was Tilly near the end of life? If Tilly wanted to die, could she do so without shame? Who was responsible for this squabble between the patient and her caregiver? Should Carol have anticipated this upset and been more sensitive to Tilly’s wishes?
Patients rarely know what they want, particularly, when it comes to dying. Family caregivers rely on their patients to tell them what they want. Starting in 2017, caregivers need to be adept at advance care planning. No longer can they set themselves up for failure and grief. Healthcare providers need a New Year’s resolution to support caregivers. My “Blog Series for the Seasons of Caregiving” is dedicated to discussing advance care planning throughout 2017.
The nature of planting a seed offers three tips for caregivers:
As a caregiver, you become a steward for the life of another. You often manage their healthcare, finances, and social activities. You stake a personal claim on your loved one’s life. Your loved one becomes your patient, and your patient becomes the most important aspect of your life, which is likely to become all too time consuming.
Family caregivers often have no idea of what they are getting into. Your duty as a caregiver tend to evolve from supporting your patient to controlling them. You might forget that the patient’s self-determination is the only advance directive needed. By listening more and demanding less, you learn how to let go, allowing nature to take its course.
The nature of famil caregiving, like gardening, is you cannot let it go unattended. Gardening is often thought of as a side job – you’ll get to it when you can. Eventually, you realize that neglecting the situation makes it worse and harder to manage. You might quickly realize that you don’t have the tools or skills to maintain a garden. The inclination is to hire someone to do the work, but that often feels self-defeating.
Your garden, like your life, is your domain. Your family members creep in and out of your garden like thistle. Thistle is a beautiful type of daisy. It has prickly stems and leaves with rounded heads of purple flowers. It is the symbol or devotion, durability, and determination. These characteristics strengthen family ties and entice you as a caregiver. Yet, thistle can choke off other aspects of your garden and thus your life.
You, as a caregiver, rarely have time for anything and everything is on your to-do list. No one struggles more than caregivers. It is often futile for others to know what lies in your heart and mind. Caregivers often express, “You don’t know what I am going through.” This reflects the weight upon your neck, back, and shoulders. You are right. More emphasis is placed on your patient’s well-being, and not enough attention is given to your sanity.
Through containing the situation to a particular season, your purpose becomes more certain. Every patient has a time to live, to survive, and to die. Your contribution to your patient’s life has to respect each of these times with different care plans. In the summer, you care for yourself and others differently than in the winter.
Insanity is doing the same thing over and over again and expecting different results. Caregivers drive themselves insane by expecting a terminal illness to get better. If you believe all patients need the same treatment, you have little regard for the seasons of life. Any advance care plan has to honor the season of life.
The New Year is the beginning of another journey. An inaugural opportunity to plant an intention and watch it grow through the year. In 2017, follow this “Blog Series for the Seasons of Caregiving.” Learn how to better nurture yourself as you care for others.
Yea, though I walk through the valley of the shadow of death,
I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Yea, I dare you to fear no evil as you watch Netflix’s haunting documentary “Extremis.” The ICU at Highland Hospital in Oakland, CA represents a walk through the shadow of the valley of death. In each room, patients are confronting both their mortality and the demons that lurk in the shadows. “Thy rod and staff” might represent the higher power available to you. Tools for your own spirituality. Yet, most of us mere mortals rely on coping skills, succumbing to demons.
The demons are our own worst fears. These include breathing machines, feeding tubes, losing control and feeling confused. Demons exist as our own worst enemies. Those who claim to be righteous and provide indignation in the name of God. These demons wear the masks of healthcare providers, family members and the man in the mirror. Having these demons exposed through “Extremis” allows us to confront them.
The spiritual battle exists between our own worst enemies and final wishes. There are three intertwined conflicts:
Self-preservation and survival of the fittest wage the battle with our own mortality. Being in conflict with Mother Nature rarely bodes well. Nature often teaches us about life. It seasons tell you that there are times to live, survive and die. Is there life after death? Nature answers this question and offers spiritual guidance. When there is life after death, you can lessen the need to prolong this life. Being in harmony with nature is your best bet to dying with dignity.
Physicians and family members often stand in defense of your leaving any time soon. Every potential treatment has to be exhausted. Patients rarely have their say until all is said and done by physicians. Advances in medicine prompts more patients to go through extremis. Extremist promote extremis. They tend to be righteous through the adage, “What doesn’t kill you makes you stronger.” Most people who stand in the middle ground of dignity believe that less is more. This spiritual truth allows for less medical intervention and more comfort at the end of life.
Personal reflection is necessary to separate our needs from out wants. While wanting to make others happy, we often sacrifice our needs. While wanting to prove ourselves to superhuman, we often sabotage our personal dignity. We often look to others to validate ourselves. Yet declaring self-worth is a spiritual undertaking. No one can give you dignity – you have to feel it from within your own heart. This deep-seated level of certainty allows you to proclaim, “I’m good!” This feeling of fulfillment gives you the sense that life is complete and you can now rest in peace.
Spiritual considerations resolve personal conflicts, allowing your spirit to be set free. Only you can guard against extremis through following your heart and advance care planning.
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Caregivers often suffer in silence while looking after loved ones and grieve in the aftermath of their death.
These twice a month email tips help caregivers understand that pain and suffering are inevitable – grieving is optional through better advance care planning.
Let’s start developing a community that creates and grows understanding, knowledge and support for compassionate end-of-life care.
Few patients anticipate the need for critical care. Some people call 911 too late. Such was the case for Selena in the Netflix documentary “Extremis.” She was having chest pain and struggling to breathe, but she told her daughter not to call EMS. Selena stopped breathing on the way to the hospital. EMS responded and began CPR. A breathing tube was inserted. Selena suffered brain damage and was admitted to the ICU at Highland Hospital in Oakland, California.
Selena was in a vegetative state, lying in a bed and hooked up to machines. Her daughter and brothers were at her bedside – hoping and praying for her recovery. Dr. Zitter was the ICU physician in charge of her care. Selena did not have an advance directive. It was now up to the family members to decide Selena’s fate. An advance directive could have been Selena’s “get out of jail free” card.
3 Practical Considerations for advance directives include:
Practical considerations come down to – timing is everything. Selena needed more time to recover. The family needed more time to come to terms with the situation. Dr. Zitter needed more time to conduct tests to determine brain death. Critical situations require personnel to act first and to ask questions later. The implied directive “to do or die” is an emotional response. The advance directive affords a practical plan of action when the emotions settle.
A wish implies a desired outcome. A plan of action exists within a timeframe. The average patient spends three days in the ICU. Seriously-ill patients generally stay longer with worse outcomes. If you wish for a good death, you have to consider dying sooner than later. Will you complete your advance directive in a timely manner? Would your advance directive state how long a breathing tube stays in?
Hope implies an expectation of improvement. False hope is misleading and leaves people in the dark and wondering. Dr. Zitter opened up the discussion of what was best for Selena with the family. What feelings and hope did her daughter and brother have? Dr Zitter listened intently while being careful not to express her opinion. The Hippocratic Oath states, “above all, I must not play at God” – pretend to be all knowing.
Dr. Zitter may not be all knowing, but was she holding out hope for the family? She had left the situation open-ended while Selena was in extremis. The brothers were leaving Selena’s fate up to God. If Dr. Zitter were being objective, she would not give the family any hope. “Hope springs extremis.” Your advance directive has to trump your family’s belief that hope springs eternal.
Physicians lose credibility when they rely on family members to tell them what to do. If the physician does not know how to manage extremis, will the medical power of attorney know better? Physicians have to remain grounded in evidence-based medicine. This is the medical condition, and this is the prognosis. A physician’s internal advance directive has to lead end-of-life conversations.
Most physicians tend to be wishy-washy about the certainty of death in any given patient. It was evident that Selena was going to die, yet it took six months for her to die. By collapsing her head in her hands, Dr. Zitter displayed torment. It’s troubling when healthcare providers fail to heal patients. And doubly embarrassing when patients receive indignation. All physicians need a practical plan for allowing patients to die with dignity.
Patients also need to be practical. They need to plan for extremis by completing an advance directive sooner than later.
Subscribe to Dr. H’s Clipboard –
Caregivers often suffer in silence while looking after loved ones and grieve in the aftermath of their death.
These twice a month email tips help caregivers understand that pain and suffering are inevitable – grieving is optional through better advance care planning.
Let’s start developing a community that creates and grows understanding, knowledge and support for compassionate end-of-life care.