Real Intentions for Life

Grip the Coping Tool of Denial

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“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:

Grasp it

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?

Handle it

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.

Release it

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.

Enjoy it

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Be Prepared For Emergencies

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“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:

  • Start from the beginning

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.

  • State just the facts

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.

  • Any additional information

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?

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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.

 

 

 

 

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Adopt Your Caregiving Philosophy

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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:

  1. Proactive

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.

  1. Poised

“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:

  • Be consistent

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.

  • Create balance

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.

  • Promote compromise

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.

  1. Parental

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.

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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.

 

 

 

 

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Bringing Your Personality to Caregiving.

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What do people like about your personality? Are you fun-loving or organized? Do you see the glass half-full or half-empty?  Do you tell it like it is or mince words? Do you like to speak on behalf of others or prefer to listen to what they say? Do you know how to act when the physician walks in the room?

While Helen was telling the ER doctor about her medical complaints, her daughter, Joan, was sitting in the corner reading her book. At one point, the doctor caught Joan glaring at her mother with a look that could kill. Her eyes conveyed that it was time for her mother to die if she was so miserable. Misery loves company. Yet your personality informs you about how miserable you want to be as a caregiver.

Like Joan, you are not required to be someone different while being a caregiver. You may have been chosen to care for your loved one by default, but why not make the best of the situation instead of being upset? You might question, “Why is this happening to me? Why am I called to be a caregiver?” This “why” suggests that you have the personality for it Your “why” is what makes you step up and be recognized as the best person for the job.

Joan was stuck between a rock and a hard place – the rock of needing to be a disciplinarian and the hard place of her mother aging. Her only option was to polish the rock through “romancing the stone.” You romance the stone through three aspects of your personality.

  1. Be receptive

You are who you are.  This stone-cold fact can be either rejected or accepted. Most caregivers believe they need to be careful about what they say and do. They might feel as though they’re walking on eggshells, trying to not upset their patients’ medical conditions. You, however, have very little to do with your patient’s illness. Your patient has a right to his or her own feelings and you have a right to have yours. Your best intention is to be yourself.

The hard facts of a loved one facing death and dying are devastating. Sometimes it feels as if little stones are being hurled at you. Other times the big boulder is rolling toward you. You may not see the rocks at first, but then they hit you like a personal assault. More than likely, you’ll become angry. You work hard to shore up your loved one and then experience rockslides.

Be receptive to softening your anger through your personality. Everyone has a soft side to his or her personality. A gentle, generous and passive part of one’s nature. When the going gets tough for your patient, you can either get tough or soften up. Most caregivers are romantics at heart.  Using this part of your personality allows you to become less angry.

  1. Be romantic

Romance opens the door to your being creative. It permits you to fall in love and be fascinated with a person, place or thing. This enthusiasm is generally short-lived, but will often stay with you for a lifetime. The love that exists in caring for another will wax and wane. The task of caregiving may last three months or three decades. You need to make the most of it if you intend to walk away from the situation feeling blessed by the experience.

Romancing the stone is like polishing a stone and making a gem out of it. Or taking a plot of land and making a garden out of it. This doesn’t happen by accident. It takes a lot of blood, sweat and tears. No one expects it to be easy, yet your personal satisfaction during the process is paramount. You need to feel a sense of accomplishment at the end of the day.

With each thrown stone of something bad happening, you can sculpt it into something good. Your “why” becomes purposeful. Your personality allows “the stone that the builder rejected to become the cornerstone.” Your personality can allow you to see the future in a positive light. That stone at your feet might be the beginning of a new foundation.

  1. Be resolved

Your being firmly determined to do something stems from your personality. Being a go-getter or laid- back is an attribute of your personality. This encircles you like a fortress. It prevents you from being influenced or susceptible to outside forces. It’s your best defense against fear.

You prevent fear from getting the best of you by not giving it attention. Your best defense is to stop worrying about what might happen. The foundation of caregiving is not to care too much. Don’t be afraid of what happens, but realize how to use your personality when the situation with your loved one takes a turn for the worse.

Resolve to have strength under fire. Use the best part of your personality to allow you to cope. Many people find humor to see them through. Others tend to dance around illness. Still others are more matter of fact. Whatever speaks to your nature is what makes you an authentic caregiver. Resolve to let your personality shine though as you care for others.

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Preventive Care Tools

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It was no accident that Gwyn had to be her husband’s caregiver. She was a wellness instructor and understood the value of preventive care. The goal of wellness is to prevent illness. Gwyn had just turned 50-years-old and her husband was diagnosed with multiple myeloma. Gwyn knew the importance of creating balance in her life. But was she prepared for the upset of her husband’s illness? Was her wellness experience key to creating an advance care plan?

Preventive care is necessary for you, as a family caregiver, to guard against burnout and heartache. It’s been said, an ounce of prevention is worth a pound of cure. Meaning – it’s better to be prepared than needing to fix problems later. Having an ounce of prevention is the necessary tool that allows you to survive caregiving and prompts you to do no harm.

In staking out a garden, flags are posted every so often in the yard to mark the spot where a new plant will either flourish or perish. The garden becomes a pin-cushion for your hopes and dreams.  By the same token, your patient may feel like a pin cushion when he experiences repeated needle sticks. Your hopes and dreams might appear as inflicting harm to your patient.

3 Preventive care tools can help caregivers do no harm:

  1. Keep it simple

A gardening project can get out of hand. You may think you’d like a lot of plants or that mowing a large lawn is not a chore. What if you had to hire someone to keep up your garden?  How expensive does this become? There is no such thing as a low-maintenance patient. Caring for your loved one is often manageable at first. Then like a vine, the growing responsibilities begin to creep into every aspect of your life.

Keeping it simple requires that you begin to think in reverse. Breathing tubes and feeding tube need a lot of maintenance. Frequent hospitalization results in burnout. Encouraging others to get better is like beating your head against the wall. It becomes self-defeating.

Tell yourself that your job is not to prevent your loved one from dying. Commit to making life easy for you and your patient. You have the choice to say, “We can either do this the easy way or the hard way.” The hard way means inflicting harm. Oftentimes, for no good reason.

  1. Appreciate your work as a labor of love

Do you tend to slave away or enjoy life? Saying, “I love what I am doing” often becomes fleeting as the years pass. A true labor of love is giving yourself permission not to do everything or achieve any results. You can just “be me” or “live in the moment” without expectation or judgement.

“Love is patient . . . Love is not easily angered.” When you become angry, you are caring too much. You have reached a boiling point. You need to turn down the heat and allow a cooler head to prevail. Losing your patience might reflect that your patient losing his battle with chronic illness. Learn how to use love to let go of fear and anger.

Allowing nature to take its course is a labor of love. There is strength in being both aggressive and passive. As a caregiver, your work is to find balance between being gung-ho and letting go. This prevents you from losing your sanity and becoming sick yourself.

  1. Treat caregiving as a gift

The value in receiving a gift is you can take it or leave it. Can you think of caregiving as not being important to you?  How can you give up being a caregiver when someone is depending on you? In this context, your loved one has become more of a parasite than a person.

Living together is a close physical association can mean that you share a symbiotic relationship. Each person gains some advantage through being together. Viewing one another as a gift, you may appreciate this relationship as a blessing and a curse. Establishing this middle ground upfront may prevent you from feeling like killing each other.

Caregiving is only a gift if you remain indifferent to it, i.e. you can take it or leave it. Remaining indifferent is the path to doing no harm. It’s a passive tool that caregivers rarely use. Guard against staking out the perfect garden. Allow enough room in the space for indifference. You’ll experience serenity as a gift when you allow nature to help fill in the gaps.

 

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Planting a Seed for 2017 to Support Caregivers

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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:

  1. Planting a seed provides food for thought

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.

  1. Planting a seed grows into a gardening project

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.

  1. Planting a seed inspires advance care planning

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.

 

 

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3 Tips for a Yearly End-of-Life Assessment

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When the ball drops in New York City on New Year’s Eve, will you be ready?  When the bombshell of a cancer diagnosis hits you in the ER, what will you do?  Listen to the doctor or follow an assessment and plan of your own?

Sara was a 68-year-old woman who was not feeling well and had shortness of breath. The doctor thought she might have a blood clot in her lungs. Her CT scan showed that she had lung cancer that had spread to her liver, thyroid and kidneys. She smoked for many years, but never imagined it taking a toll on her body.

Life, as Sara knew it, ended sooner than December 31.  She needed a moment for reflection and time to make an assessment. She could stay in the hospital, but had the option to go home and sleep on it. A home-base palliative care nurse was consulted and met with her in the ER.

Consider these tips for a yearly and end-of-life assessment:

  1. Count your blessings before taking on hardships.

Sara’s husband immediately broke down with the news of her metastatic lung cancer. If there was any doubt of her finding Prince Charming, it was tearfully obvious. She had a fulfilling career as a teacher and raised two successful children. Given the stress of the situation, Sara had remarkable strength.

With counting your blessings, you take note of your accomplishments. Comfort and joy emerge from realizing that you achieved a lot of your goals. Unfinished business often seems unnecessary and like a hardship. We generally do what matters to us and this is what others tend to remember about us. “All’s well that ends well” when you die with a sense of thanksgiving rather than focusing on the loss.

  1. Create closure before opening the window of opportunity

Just as 2016 draws to a close, your life is certain to end. Will there be a series of celebrations or the feeling of “Bah Humbug.” Denial will keep you from creating closure, certainty allows for acceptance. The serenity to accept the things you cannot change allows you to sleep in heavenly peace.

Sara had to think about how her sisters were going to react to her cancer diagnosis. She felt they were going to insist that she receive chemotherapy. Would they also offer to suffer its side effects? Did Sara wish to die miserably to make her sisters happy?

Closure involves giving others reassurance. It’s a reminder that “when a door closes, a window opens” to a brand new world.

  1. Try out the new normal before making a final decision

Out with the old and in with the new is the message of “Auld Lang Syne.” If 2017 was your last year, would you spend it differently or make other plans for the New Year? Do you have a contingency plan when you can no longer say, “at least I have my health?” Will you focus on your well-being?

Most people view Sara’s situation as the worst thing that could happen. Others might see it as a new lease on life. Sara can now live for the moment and without expectations. Can the end of life truly be carefree? We are often encourage to “try it – you might like it.” Decide how you might reach for the stars without being limited by others’ expectations.

Before another year comes to a close, make a yearly end-of-year assessment of what truly matters to you. Then create your own advance care plan.

 


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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.

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Spiritual Considerations Raised after Watching Netflix’s “Extremis” – Part 4

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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.
Psalm 23:4

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:

  1. Man against nature

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.

  1. Man against man

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.

  1. Man against self 

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.

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Practical Considerations Raised after Watching Netflix’s “Extremis” – Part 3

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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:

  1. Timing is everything

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?

  1. Remove hope from terminal illness

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.

  1. Allow evidence to stop extremis

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.

 


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Caregivers often suffer in silence while looking after loved ones and grieve in the aftermath of their death.

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Mindful Considerations Raised by Netflix’s “Extremis” – Part 2

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The gut reaction to Netflix’s new documentary “Extremis” is the ICU is a hellhole.  No one wants to end up there.  Patients enter this purgatory after becoming sick and requiring a higher level of care.  Patients enter the ICU from the ER, the hospital ward, or after surgery.

Donna, one of the two patients featured in the film, has myotonic muscular dystrophy.  Her muscle weakness caused respiratory failure, and she needed a breathing machine.  Donna has to choose between having the tube removed and having a permanent tracheotomy.  The tracheotomy requires Donna has to live in an extended-care facility. Removing the tube means that she will die.

Mindful considerations identify upsets before they happen. The purpose of advance care planning is to avoid the pitfall that Donna had encountered.  Muscular dystrophy has no cure.  What Donna had to endure was unnecessary and torturous.  Donna was competent so she had to fend for herself against the physicians and her doting family.

3 Mindful Considerations for advance care planning include:

Avoid the bridge too far.

To what extreme is it necessary to keep you alive? At what age would you avoid admission to the ICU? Do you understand that you will be in the ICU following surgery?  Do you understand that calling 911 could lead to an ICU admission?  Is your medical condition expected to get better?  What quality of life will you enjoy after leaving the ICU?  “We’ll cross that bridge when we get there,” seems to be the best copout for advance care planning.

These are questions that you prefer not to think about ahead of time and are often left open-ended. Advance care planning that is open-ended will likely cause you to cross a bridge too far and take you into the ICU.  Elderly patients who are reluctant to sign a Do Not Resuscitate (DNR) often die in extremis in the ER or ICU.

Refuse nonviable options.

“I can’t live like this” becomes a personal proclamation for advance care planning. “I do not want _______” becomes a matter of choice.  You might begin to fill in the blank by refusing certain medical procedures:

Heart transplant      Colostomy bag      Breathing Tube      Feeding tube      Cardiac resuscitation     Needle sticks       Medical Specialist           Dialysis Extended-care          Chemotherapy          Antibiotics          Blood Transfusions

Would any doctor in Donna’s situation choose to have a tracheotomy?  Should doctors offer nonviable options to every patient as a matter of choice?  Who determines if a particular patient can live with a tracheotomy?  Is living with the prospect of dying ever a viable option?  How do patients get the inner strength to give up on hope and to refuse medical intervention?

Donna was looking at a longer course of pain and suffering with no hope of recovery.  Sadly, this seems to be the best practice of medicine today.  Patient-centered care calls for advance care planning that focuses on personal dignity. Nonviable options lead to patient indignation.

Put your promises in writing.

The quality of your death is a matter of choice with no guarantee. Those who rely on good faith often die in extremis.  We all know the importance of getting our guarantees in writing, yet many people fail to do so.  They trust in God and the healthcare system.   Advance care planning provides the means for you to maintain control over the decision-making process. Being mindful requires taking responsibility for both your life and death.

Mindful considerations help you balance refusing and receiving medical intervention.  Entitlements are what you receive.  Empowerment allows you gain dignity through refusing intervention.  Donna had to choose between entitlement and empowerment- suffering and freedom.  Had she made a promise to herself about this choice? Were others aware of it?

How did Donna feel about corporal punishment?  Was the breathing tube necessary?  Was a permanent tracheotomy acceptable?  Does the prospect of corporal punishment prompt you to get things in writing?

“Give me liberty or give me death” are the immortal words of Patrick Henry. Is it important to include these words in your advance directive? “Give me extremis,” as in inhumane treatment, is absurd.

Be mindful of what you wish for and put it in writing. If you do not wish to suffer in extremis, plan ahead.  Be mindful that withholding life support supports personal freedom and everlasting peace.

 


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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.

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