My Guide for Caregivers When Your Loved One is in the Hospital
Hospitals are strange places. We come to them seeking healing, yet routinely uncover only more barriers to wellness. Yes, hospitals are not ideal. A few weeks back I discussed aspects of my approach with hospitalized pediatric (and adult patients) during the course of the overall healing process. This week, however, I wanted to address and provide some practical recommendations for CAREGIVERS when it comes to supporting and healing your loved ones during a hospital stay. As I said before, the modern hospital is not the ideal place for most to begin the healing process and it can be quite challenging to incorporate fundamental ancestral, lifestyle, and integrative healing principles into one’s care in such a place. However, with present awareness, an open mind, and some helpful guidance (hopefully from a few of my tips) your loved one can recover quickly and be restored to optimal health and avoid some of the potential harms of being cared for in the modern hospital setting. To start things off, I think it is important to recognize a disappointing, but purposeful observation. 1. Hospital healthcare workers, trainees, and students are often overworked, sleep deprived and frustrated by numerous internal barriers to providing personalized holistic care. This is not an excuse. I repeat, this is not an excuse. It is simply a statement of observation, but one that we must first accept in order to begin a therapeutic relationship as a caregiver. We can all be stressed, tired, burned out, fatigued, depressed, etc, and we must realize this simple truth in order to more fully accept all individuals. As healthcare providers, we seek to understand and meet the needs of our patients, no matter the circumstance, and as caregivers we seek to be present for and to tend to the needs of our loved ones as we perceive them. Problems often arise when the perceptions of the patient’s needs from the caregiving party are vastly different than the perceptions of those of the hospital staff (example: the physician is stressed and worried about the patient’s elevated Creatinine- a marker of kidney function, while the family is worried that their father hasn’t slept well in 3 days). Where this gets really troublesome is when both sides fail to acknowledge the relative burden of “caregiving” as either the physician or family caregiver, and fail to accept the other’s current state of stress or worry. We recognize as providers that we will see patients in their most vulnerable and worried states, but what is often not acknowledged, however, is that as a patient or caregiver, you too may see a doctor, a nurse, a respiratory therapist or a patient care technician on perhaps one of their “worst” days as well. We all have rough days and sometimes they will overlap. But we won’t know unless we ask, and we cannot fully embrace other’s pain unless we seek to fully accept their ability to be hurt, tired or relatively broken. Now, from a place of acceptance and understanding we can move into some more accessible tips for cultivating the best relationships with your loved one’s care team. 2. Be Available Hospital rounding and schedules are often incredibly busy, with only minutes to spend with certain patients and families. It can often be confusing as a caregiver, being present during all of your loved one’s stay, as to why all of these strange people wearing white coats come at one time and then never come back when you actually want to talk. It is not a perfect system by any means, and once again I make no excuses, but it is a present reality. Ways to negotiate this system as a caregiver: Rather than demand or ask the doctor or nurse to return to answer your questions and address your concerns at specific times available to you, offer a range of times in which you will be around and willing to talk. Afternoons are often variable in the afternoon and a good start for finding free time, but as a caregiver if you express to the team in the morning that you would like to speak more about your loved one’s care, suggest a range of times to your doctor and see if you can find a mutual time. Providers will be more than happy to speak over the phone or in person if they do not feel stressed my demands they are unsure they can meet. Additionally, demands can be perceived as threatening- consciously or unconsciously and as such, healthcare workers may be less willing to return to see your loved one if they have perceived you to be demanding, a burden or a challenge to implementing their care plan. 3. Optimizing Sleep Hospitals are notorious for being difficult places to sleep: alarms, vital sign checks, early morning rounds, you name it- it is challenging. What can you do to address this? 1. Ask the team or nurse if they can skip overnight vital sign checks. For example ask if they can do there final vital sign check at 10 PM, skipping the 2 AM check and checking again at 6 AM providing a full 8 hours of uninterrupted sleep. 2. Sleep aids such as Melatonin are a part of most hospital formularies and have been found to be quite helpful in maintaining normal circadian rhythm structure in patients. It can also be helpful in minimizing the potential for your loved one to become disorientated or delirious. 3 mg’s taken an hour or two before bed is a reasonable starting dose and as mentioned before available in most hospitals. 3. Try to promote a normal sleep wake cycle by engaging in activity during the day and avoiding excessive day-time napping. Yes, we need sleep to recover, but we also need well entrained circadian rhythms for optimal hormonal release, wound healing, etc. Excessive daytime naps may make up for “lost sleep,” but they are not the best solution. See the first two tips in this section for associated recommendations to combat excessive daytime sleepiness. 4. Building a Nutritious Diet Okay this could be a long answer, but to put it bluntly, hospital food is often not the greatest. The food available in the cafeteria, while perhaps different than the food available to patients, is also often not much better. This is certainly an area needing improvement and I recognize the challenges of trying to choose between putting diabetic patients with heart issues on the “cardiac carb consistent diet” that includes orange juice, muffins and sugar laden yogurts or the low carb diet that consists of “scrambled” eggs, skim milk and bland oatmeal. Not ideal indeed. A simple, but time-intensive solution is to bring in homecooked food. But you say, “I shouldn’t have to do that! The hospital should have nutritious food.” Yes, you are right, but unfortunately the hospital is neither ideal nor reliable. Some foods that can be quick to prepare for your loved one include:
5. Supporting Stress Management Anything you can do at home, you can do at the hospital! Yes!! Amazingly I have been able to cultivate a solid and diverse practice thus far during my residency training and spend much time helping my patients and caregivers with mindfulness practices to support healing. As a caregiver, explore the hospital asking about quiet spaces, green spaces or spaces for prayer or meditation. If your loved one is able, take them to such spaces, spending time outdoors in green spaces, or to places of warm light, free of relative noise and chaos. I will not get into specific practices here, but some great exercises I use with my patients who spend much of their time in bed are basic relaxation and breathing exercises as well as progressive muscle relaxation. Technology can be a great friend too, using headphones to listen to calming music, meditation sequences or natural ambient sounds. These practices are arguably the most important part of your loved one’s healing, even more so than a nutritious diet and restorative sleep. I say this recognizing the hospital is full of numerous environmental exposures and burdens to remaining joyful. I have unfortunately seen many patients become disillusioned, acutely depressed and simply overwhelmed with the lack of control in the hospital setting. And perhaps even more troubling is bearing witness to the acute loss of meaning in one’s life while wearing a gown. Hospital time is not real time, and hospital exposures are not normal exposures, and as such we need to recognize the tremendous need to cultivate spiritual, emotional and mental well being through the course of a loved one’s hospitalization in order to mitigate the negative effects of such exposures. Tune in next week to read Part II of the Caregiver’s Guide, and in the meantime, please practice and share these ideas with all those in your life. Leave a comment or share an email with your thoughts from this post. We love to hear from you!
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I believe in evolution. I believe in God. I believe in natural selection. I believe in a spiritual oneness behind all things. I believe in things that are easily “explainable.” I believe in things that may never be proven.
Like all beings, I simply believe. Belief is a powerful tool and as I shared last week, belief in the abstract sense can be quite beautiful and lead to a meaningful, fulfilled life. A little excerpt: Belief is knowing that something can happen Faith is knowing it someday will So I enter into today’s discussion on belief and faith, acceptance and approval by simply reminding us that the realm we are about to enter is one of belief, of rationalization and of creative conjecture. Not of undeniable fact or proven truth. Simply of belief. I am medical scientist and a faithful Christian. These aspects or descriptions of my being inform all others and cannot be excluded or addressed alone. One cannot exist without the other, one is not “immune” to the influence of the other and most importantly they can both exist together without contradiction. We must start to realize this fact of interactive belief so as to avoid unnecessary conflict, miscommunication or unfiltered anger towards others when seemingly different and challenging beliefs arise. Otherwise we will invariably walk down a road of needless suffering, guilt and damaging resentment. Simply put: We must recognize our beliefs and our perceptions and see others for their beliefs and their perceptions. We must accept others as they are, and realize that by fully accepting or loving someone you do not have to agree or approve of everything they do or of everything they believe in. You just have to accept them. Genuinely and completely accept them. This is not easy, I know. We strive for “acceptance” and approval over many other true needs and often confuse one for the other. And yet, despite our desire to gain acceptance, we are often reluctant to offer acceptance to others, or even more tragically, to fully accept ourselves. We seek approval when we do not need it. We do not provide acceptance when it is all we really need. We desire and seek approval in order to “feel accepted” when in reality we never needed approval to “feel accepted” in the first place. So what does acceptance look like? Or perhaps more importantly what does acceptance feel like? Acceptance is freedom It is peace in the moment. It is knowing there is no such thing as judgement. It is being deeply connected to and touched by another human being. Acceptance is believing, acceptance is empowering, acceptance is relieving to a world of anxieties. Acceptance just is. How about approval? Why do we often get these two confused? Ever feel hungry when you are actually thirsty or tired? Ever feel angry when you are actually just lonely and isolated? It is easy in states of heightened emotion with “uncontrollable” environmental burdens to cross-contaminate the emotional waters and for the mind to start telling itself a story that is actually quite untrue. How do we combat this? Here is a simple exercise I have created and practiced to help in these moments of emotional distortion or potential confusion. First, as with most things, take a pause: Three simple breaths They don’t have to be deep, they do not need to follow a special pattern. You just need to pause and know that you are breathing. Know you have taken three purposeful breaths. Then from this place of reflection, repeat this series of phrases or mantras: I am vessel for acceptance. I fully accept others as they fully accept me. I greet others with openness and seek nothing but acceptance. I am independent of other’s approval and seek not to obtain such recognition for its sake alone. And if moved by your own spirituality or faith you can repeat these phrases. I have been accepted and graced by God, my divine, and I will offer such acceptance to others knowing they too, have God’s precious grace. For I did nothing to receive such grace, and will never need approval to fully accept it. I am working to be an accepting vessel remembering I never need approval to accept others and myself. For in reality, it is only when we start looking for approval that we forget that we were and will always be Accepted. As I am currently completing my first rotation in Pediatrics as part of my Family Medicine Residency training, I thought it would be an opportune time to discuss my approach to holistic pediatric (and even adult) medicine. Over the past few weeks, I have seen numerous children in the hospital and outpatient setting. From the 2-hour newborn to the 18 year-old struggling with a complex psychosocial situation, I have been quite impressed with the depth of knowledge required to be a pediatric hospitalist and general pediatrician.
I often joke with my brother's girlfriend, who is a veterinary technical assistant, that being a doctor should be simple, you are just responsible for one species. When it comes to taking care of kids, however, the idea that they are all Homo sapiens somehow is just too hard to believe. Developmentally complex, children can be categorized by certain physical and cognitive milestones, but in reality, this is just a snap-shot reflection of the person he or she currently is, and may have no bearing on the adult he she will eventually become. Nurturing and caring for our youth is something near and dear to my heart. Having grown up with all younger cousins, I literally saw the growth of my relatives from diapers, to tricycles and rec soccer, to finally graduating high school and moving on to college. I currently have been serving for almost 2 years in my local church’s Children’s Ministry, teaching, learning and growing with elementary age kids, seeking to further a relationship with Christ and live a joyful, playful and overall meaningful life. If I were to tell you that the most important part of their physical maturation was constant oversight from a pediatrician during well child checks, sports physicals, the occasional visit during a tough cold, or the acute visit for that really weird rash, you might think this to be a grand overstatement. But take a closer look at this thought, and what you might find instead, even when we start to consider the acute illness requiring hospitalization, is a relationship of trust whereby the pediatrician, hospitalist or family physician is able to nurture the growth of a child, simply by being a positive presence, someone who genuinely and deeply cares. It has become very obvious to me, that even in the hospital setting, that many of my discussions revolve not around specific aspects of a particular illness or presenting complaint, but on how a kid is doing in life. What sports do they play, are they involved in dance or art, how much are they sleeping, do they have any problems with their diet- too much candy, food intolerances, not eating enough vegetables, binging on ice cream and Chinese food, how was life at school, do they have close friends, if they have siblings what is their relationship like, have they been able to travel to another state or country, what do they want to do when they grow up, what was the coolest thing they’ve done in the past week? To me, taking a history is so far removed from asking about quality, duration and onset of pain, or reciting a laundry list of questions for a complete review of systems that I sometimes even forget where I am even working. Even when these components are required as part of a complete medical encounter, I will always seek to inquire about total well-being: social, spiritual, physical, and emotional. I will be the first to admit that I have previously worked extensively with a psychologist, seeking to improve my overall well-being, digging deeper into my weaknesses and fears, and making sense of any thoughts or doubts that would swim through my mind. While this relationship worked for me, it may not be right for you, but what I encourage of everyone is to find that person in one’s life with whom these types of discussions can occur, completely safe, secure and free of judgment. It certainly does not have to be with a trained psychologist or even a family member or friend, the arrangement and sense of true acceptance are all that matter. Expanding from this encouragement to pursue and develop an open and supportive relationship in one’s life, I have thought more and more about my many pediatric encounters, and it has become entirely clear, that perhaps, such a dynamic and supportive relationship is being shaped without the child, family or doctor even being aware of its supportive construction. Through thoughtful and meaningful interaction over a period of time, a general pediatrician or pediatric hospitalist can become a trusted presence in a child’s life such that the child can actually begin to cultivate a greater sense of positive well-being and adopt new self care practices to hopefully prevent future illness. Taken to the hospital setting, one can begin to see the potential for truly impactful change during a period of serious illness and relative stress. No one wishes to be in the hospital, and I would argue that the only thing people want more than to leave the hospital is to never come back. As such, I realize that the hours, days and potential week spent in a hospital can be a monumentally productive time where a vulnerable child and family can become much more willing and engaged to learn why their child ended up in the hospital in the first place and what exactly can be done to prevent any future hospital visits. But learning and prevention take time and effort. If a doctor is only willing to perform rounds and get the “EMR” completed without a second or third visit to speak with a family, much of this potential growth will never be realized. I can certainly say that overall workload and EMR obligations make this type of care more challenging, but for someone just 3 weeks into learning how to be a pediatric hospital MD, it is indeed possible, it is simply a question of priority, awareness and mindful intention. Have I been able to engage in such discussions with all of my patients and families- of course not. Could I be doing more- certainly. But what I realize and want to convey to you is simply knowing YOU CAN. Whether in the hospital, on the sports field or general clinic YOU CAN. We CAN. We ALL CAN. We can be the positive presence a child and family need to heal, grow and open, allowing them to share all of their worries or when they are hurting or when things get tough. It’s a fact of life that we all want to be happy, healthy and remain free of suffering. Sometimes, however, illness, negative thoughts, and unexpected life events can cause upheaval in this balance. While I always hope to have people in my life that I can turn to when times are difficult, I ultimately want to know that I have the tools and personal resiliency myself to face any challenges, all the while, knowing I have a support team waiting in the wings to catch me should I stumble. Being a pediatrician or pediatric hospitalist can be so much more than simply being the “kid” doctor. We can empower kids as their families to be owners of their health and vitality. As I have said many times before, the hospital is all too often the home of sick care and the outpatient clinic the home of chronic band-aids. I am never one to discredit the value of hospitals, and certainly do not want to come across as someone who sees hospital care as completely dysfunctional, I merely want to suggest that there is an alternative when it comes to how we use our time, where we direct our energy and what we actually offer as supportive resources. Will the hospitals of today ever become holistic acute care centers incorporating lifestyle medicine as their foundation, allowing patients to sleep on regular schedules, eat whole and nourishing food, engage in communal connection with others whether in play, spiritual bonding or simple conversation, discover practices to help reduce stress and support resilience, all while additionally having access to specialized technology delivering appropriate and cost-effective acute care when necessary, I have no clue. Maybe we need a replacement for the hospital all together? Once again, I have no clue. What I do know is this: as health care providers, we must open to cultivate a relationship of positive intention no matter the patient’s circumstance or environment for healthcare delivery. We must be in it for the long term supportive relationship even if it appears we will be only a part of this person’s life for 2 days. We must care and love our patients enough to show them how to heal, to become resilient, and to forever flourish. While the specialized tools at my disposal may be drastically different in the hospital setting versus the outpatient clinic, the space and intention I hold will always be the same, and guess what, lifestyle medicine will always be accessible. Always. To close I give you the essence of my intention when delivering medical care to all. Remove the obstacles to cure, educate individuals about new ways of living this most precious life, support people as they navigate such challenging obstacles and engage in a relationship founded on love. Remove, Educate, Support and Love. This is my purpose, this is my mantra, This is my life. To Be or To Do, That is the Question
If you’ve read some of my previous posts, you have probably picked up on the fact that I speak quite frequently (in perhaps a slightly philosophical and abstract manner) about the importance of reflection and savoring moments of simply “being” in order to fully flourish and thrive in the service of others. Those that know me quite well would probably share that I am quite active in “doing:” writing, researching, serving my community and just recently beginning work as a family medicine resident. I do a lot. And honestly, I am likely doing too much. But how do I get so much more accomplished now than when I previously spent more “quantitative” time engaged in “doing” activities without a single second devoted to meditation or a purposeful pause? I wish I had a strictly logical or rational answer to this question, but the truth, such an answer escapes me What I can say, however, is this: We need being, and less doing, to actually do more. What? Let’s get one thing straight, there is not and will never be “enough” time in the day for us to satisfy all of our desires or complete all the work (no matter how selfless) we initially planned to accomplish. In fact, the more you attempt to schedule doing in your life at the expense of time to rest and simply be, you will slowly begin to do less and less, and feel less satisfied even when you have theoretically accomplished “more.” Rather than start an entirely philosophical discussion trying to make sense of this concept of balancing doing and being, I propose, instead, that we extract practical meaning from this dichotomy of being and doing by addressing two simple, yet surprisingly profound ideas.
From these two statements, it becomes quite clear the we can consciously and unconsciously pursue doing rather than being because we perceive it to be the easier task when it fact doing may actually be beyond our capacity and downright impossible. Choosing to do because we have “learned” it is likely easier and more rewarding than simply being when it fact, in a particular situation, we may not actually have the means to do anything. Any situations come to mind where you felt helpless or rushed and tried to do something in order to fill a space or that void of discomfort? To give a practical example, ask any EMT or Emergency Room doctor about Advanced Cardiac Life Support: the algorithms and process for attempting to resuscitate someone after a cardiac arrest, and what of all the things that are a part of this relatively complicated algorithm actually save lives? If you guessed the drugs, you are unfortunately mistaken. Yet, with all the research done showing no actual benefit to the administration of nearly all drugs administered during a cardiac arrest when compared to well performed basic life support including compressions and, if possible, a timely and fortunate electric shock from a defibrillating device, we give the drugs anyway. Doing because it seems easier than being, even when doing cannot actually be done. I reiterate this amazing truth in order to bring clarity during those moments of uncertainty, fear or doubt. No matter the situation, WE WILL HAVE ALWAYS the capacity TO BE, but very often WE WILL NOT HAVE the capacity TO DO. Yet, paradoxically, it is precisely in the moments where we cannot do, that we choose such a path because simply being seems impossible or entirely unthinkable. Why exactly during these most difficult of times do we struggle with the decision to do rather than to be, when in reality, there shouldn’t be a decision to make at all? Now that my friends, is a question worthy of a philosophical discussion. Have a wonderful week. |
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