easychairNow that you know how to be and find a hospital advocate, what about the advocate herself? How does she get her much-needed support? Being a caregiver can be a staggering job and consume your mental, physical and emotional energy. Yet there are many ways that you can be supported at this time. This not only applies to hospital advocates, but all caregivers as well.

Herbalists are caregivers, too. In fact, there are many ways to give care: emergency care as I just did with my mom in the hospital, care for someone who is dying, elder care, child care, handicap care, Alzheimer’s/dementia care, and of course everything in between.

Caregivers: Earth Element Types

There’s a distinct caregiver personality archetype. This is someone who tends to nourish, give and do for others, often regardless of whether it’s needed or wanted. In traditional Chinese medicine (TCM), this is called an Earth Element type.

We are currently in the Earth Element "time of year," the two-and-a-half month period when its energy should flourish and thrive. This means that caregivers may find themselves with an especially strong drive to give and care for others, even to the point of over-giving, or they may find that even though they want to give, it’s more difficult or tiring now than usual.

Caregivers need support and help themselves because as one reader of my recent blog said, "Disordered Shen is catching!" Being an advocate can be intense to say the least, so it’s not unusual for caregivers to become exhausted, ill, or even develop symptoms of Shen disorder – insomnia, anxiety and agitation. Caregivers are notorious for giving to everyone but themselves, and this is what leads to their illness and decline.

Regardless of whether you are a caregiver professional, caregiver archetype, in a position where you normally give care, or your care is needed now, the situation is the same: you must also care for yourself in order to stay strong so you can continue to give.

So how does the advocate or caregiver get cared for, too?

The key is – GET HELP!

If you are not taken care of, you will not be able to care for others. The same goes for the person taking care of you – if they aren’t cared for, they can’t give you the care you need. So it’s essential that the caregiver gets good rest, food, water, exercise, and help as needed. No excuses here! No buts or what ifs, and I especially mean that for those of you who give and give and give at the expense of your own needs or health.  You know who you are!

There’s no guilt that can be inferred or adopted here because if you do not take care of yourself, then you are not truly serving the one you are caring for. You are also setting up a future need of care for yourself from others – and this often appears in the form of cancer for you folks. Plus, if you don’t get help, your patient will suffer as a result and your need for care will take from them. So whether you avail yourself of help from family members, friends, neighbors, or outside help, take the self-care train and get on board!

 

About Getting Help

  • Write down your needs: Often writing down all your specific needs makes it more obvious what type of help you seek. You may actually require several different types of help such as medical, sitters, personal care, shoppers, financial planning, and so forth. List all of these along with their detailed points.
  • Make people aware: Often, people don’t know you need help but think you have it covered. If you are acting like Superman or Wonder Woman, people will think you don’t need help. That’s the fast track to a breakdown or burnout. Others may want to help, but they don’t know what to do so it’s necessary that you ask for the help you need.
  • Be specific: When you ask for help, or others offer help, provide definitive times, days and tasks. Give advance notice. If someone can sit with the person to give you a break, offer suggestions as to what they can do together.
  • Accept what is offered: Allow others to help as they can and as they offer, even if it’s just one time or a small task. Be grateful for the small things, as they do add up.
  • Share the help wealth: Don’t overburden a few people with many jobs but include many people with simple duties.
  • Don’t make demands: Make requests for what you’d ideally like to have happen and then graciously accept what does happen.
  • Be respectful: If people say no to your request, respect that. Find out what they can do and accept their limitations.
  • Get creative: If one thing doesn’t work, try another. Use your imagination. For instance, try new approaches for those who can’t read such as giving the person an iPod with recorded books. This not only provides them enjoyment, but gives you a break, too.
  • Financial Help: There are many resources available for obtaining the needed finances to care for your patient. Consider trade, Medicare, Medicaid, long-term health insurance, federal and state government agencies, volunteer programs, church groups and family members.
  • Outside help: There are many resources available where you can obtain outside help. Often the patient’s doctor sets these up, so put in your request. Consider social workers, home health care, skilled nursing, nursing homes, home health aids, personal care aids (for dressing, bathing, eating, changing beds, laundry and light chores), foster homes, boarding homes and hospice. Know that hospice is also for palliative care, not just terminal conditions, plus it offers more than home health care and covers more expenses, too. As well, be sure to check available local programs to see what they offer and how they might meet your needs.
  • Ideas for help: Keep your requests reasonable, specific and timely. Consider sharing telephone calls, staying in close touch, doing research for you, talking to the doctors or practitioners, driving, grocery shopping, picking up medications, bringing meals or other needed items, providing a listening ear, giving you breaks, walking or exercising with you, and taking on the job of finding the help you need.

Care for the Caregiver – Things You Can Do to Help Yourself

  • Eat well: Keep your diet simple. Emphasize protein, vegetables and fruits as appropriate for your body’s needs. Eat three good meals a day with perhaps one or two snacks. Keeping your blood sugar balanced increases your energy, stamina and immunity. It also helps you sleep better. When you are stressed, the body has less tolerance for internal stressors. Challenging foods such as sugar, caffeine and alcohol create internal stress and so often cause health symptoms during stressful times (including menopause) when they seemingly don’t otherwise. Foods that cause liver congestion are also less tolerated during stress. These include fried and fatty foods, alcohol, caffeine and other stimulants (maté, chocolate), cheese, nuts and nut butters, chips of all kinds, and excessive intake of turkey. 
  • Get sleep: Grab what sleep you can including naps. Post "do not disturb" signs and take them down when you may be disturbed. Sleep when the patient does. Most hospital rooms have a recliner or couch for visitors, so take advantage of it.
  • Exercise frequently: Even if you can only take 5-10 minutes off at a time, exercise as possible. Include frequent stretching and take the stairs.
  • Feed your spirit: Engage in meditation, prayer, spiritual contemplation, reading, and other activities that juice your spirit, even if just for five minutes at a time.
  • Delegate tasks: You don’t have to do it all. Truly. Determine what is key for you to do and get help with the rest.
  • Set priorities: You don’t have to do everything right now. Really. Set goals and solve problems one at a time. Pace yourself! 
  • Talk with others: Share your experiences, feelings, ideas and thoughts with others. Talk with more caregivers. Seek counseling if needed. Avoid isolation!
  • Maintain humor: Laughter and humor can lighten many a difficult situation and improve everyone’s energy.
  • Plan ahead: Bring food, water, snacks, blankets, layered clothing, music, books, drawing or writing materials, a journal, and other items to care for all your needs. Look to the next day or two and plan accordingly.
  • Take frequent breaks: It’s essential that you "get away" from the caretaking situation. If you can’t get blocks of time off, take frequent short breaks. Do what you can and be creative about it. Walk, take the stairs, go outside, call a friend, read a book – you get the idea.
  • Be informed: The more you know about the person’s condition and needs, the better prepared you will be and the less stressed as a result. Ask for help in researching proposed medications, procedures, the patient’s condition, local resources and so forth. 
  • Have back up: I know I keep harping on the get help part, but at the very least have others bring you good quality food and water, guard the door to protect everyone’s sleep, and bring requested items.
  • Emotionally release: Appropriately express and release your emotions so they don’t build up inside. Long-term suppressed emotions stagnate your energy and blood, leading to a myriad of health issues over time. Thinking about how you feel doesn’t work because it keeps you locked in mental and emotional loops that only intensify your feelings. Instead, write them down or talk with a friend or professional. 
  • Self-nurture: You know best what you need so take care of yourself. If you require specific types of food, regular exercise, or certain hours of sleep, be sure you maintain them however you can. 
  • Treat yourself: Include in your self-care plan periodic treats that nurture you. Avoid food teats as these usually make you feel worse in the long run. Instead, buy something for yourself, watch the sunrise/sunset, get take-away food, or listen to favorite music or sports.
  • Be gentle with yourself: It doesn’t help anyone to beat yourself up for forgetting or not doing something in time. Know you are under extreme stress and allow for how this affects you. Do what you reasonably can first and then seek help for the rest as you work toward the larger tasks.
  • Let go: Your normal life may well be on hold so let go of expectations, deadlines, extra duties and so on.
  • Thisis your service: Know that being a caregiver IS your service. THIS is your service, your gift and focus. Like raising a child, your patient takes precedence over everything else, except your own physical needs. Realize the gift you are giving IS your work in the worldat this moment in time. Surrender to this and know it is a gift for you as much as it is for your patient. 
  • Take herbs: Herbs are powerful. While most are gentle, they also support your body-mind complex to assist in stressful times. Herbs can increase immunity, help sleep, calm the mind and emotions, and treat issues such as anxiety, depression and disturbed Shen, all of which can easily arise during stressful caretaking situations. Herbs are also easy to find and take. Look for them in health food, herb shops or alternative markets. Even mainstream drug stores and groceries now carry common herbs. Take them as needed in the simplest forms possible – tablet, capsules or tinctures.

 

There is so much that can be said on the subject of caregiving that entire books have been written on it. One great book, although written for Alzheimer’s and dementia, is actually quite useful for any person needing long-term or end-of-life care. I highly recommend it: The 36-Hour Day by Nancy L. Mace and Peter V. Rabins, (Johns Hopkins University Press, 5th edition 2012).

chairIn Part I we discussed the essential need for having or being an advocate when you or a loved one is in the hospital. An advocate can operate long distance via phone, but in person is best and may even be necessary.

Here are some of the roles I found extremely useful for an advocate to know and perform:

  • Ask if there is a hospitalist in charge of the patient. If so, this is the person in charge of overseeing the patient’s entire case and hopefully, coordinating tests, procedures and medications given. If not, then the admitting doctor is in overall charge, but s/he may not be present or reachable. In this case, step in as the "hospitalist" to oversee everything that is prescribed -- tests, procedures and medications alike.
  • Know that the admitting doctor is generally the discharging doctor. This is not necessarily the same doctor but could be another member of the same clinic or association sharing their specialty.
  • Talk to the nurse in charge of the patient. Know that this nurse changes daily and nightly, though it’s possible over the weekend for them to repeat once. Do not be afraid to do this! It’s generally true that the squeaky wheel gets the most grease, and in this case, you want the best care possible. Explain the patient’s history to each new doctor and nurse. Stay courteous and respectful.
  • Talk directly to the doctor if possible (you will need the patient’s permission given to the doctor and possibly a power of attorney depending on what is discussed and your relationship with the patient). Do not be afraid to talk with the doctors! They often find your input helpful, and can give you very useful information and an understanding of why they are taking a certain treatment approach. Be respectful but firm in any requests. Explain the patient’s history to each new doctor and nurse.
  • Ask questions. Explore such issues as the doctor’s or nurse’s approach, reasoning for their chosen treatment plan, any possible side effects of recommended drugs, and ask them to explain any tests or procedures you do not understand.
  • Take a personal interest in the nurses, doctors, practitioners and people at the nurse’s station. Know their names, find out if they have children, and so on. Many are actually into health food or other shared interests so may be more interested in your patient as a result.
  • Research the medications given. They may change daily as new doctors on shifts try something different without knowledge of the patient’s tolerance or history. Particularly, research diseases, treatments and drug side effects or interactions. This will enable you to ask the right questions, make informed decisions and troubleshoot.
  • Research any proposed tests or procedures. As in the case of prescribing new medications, each doctor may schedule new tests that might not be appropriate or needed.  
  • Facilitate joint decisions. Help the patient decide whether or not they want to take a particular medicine or undergo a certain test or procedure. If the patient can’t be involved in such decisions, then the advocate takes their place (if they have power of health attorney or are accepted as a family member).
  • Bring things from home to make the patient comfortable such as a bathrobe and slippers, comforter, shawl, books, music, and other items.
  • To help the patient get rest, close the door and post a sign such as, "Do Not Disturb Until ____" and list the chosen hour. Discuss this with the nurses first so they support you in this and can schedule the vitals check accordingly. Give windows of availability so practitioners can plan on it. If needed, sit outside the door yourself and deny entrance firmly but kindly.
  • When the patient is awake, keep the door open so people know they may come to perform their tasks during that time. However, realize that a doctor will come in when they wish, regardless of the sign!
  • Know that medications often must be given or vitals taken at particular times so consider this when making plans and arranging sleep hours.
  • Request vitals to be taken every six hours instead of four if this is possible for your patient. Nurses are generally willing to accommodate this.
  • In the evenings it’s often possible for certain therapies to be skipped or vitals postponed so the person can sleep. Check into this and request it.
  • Keep cell phone ringers off and text instead.
  • Monitor visitors. Ask for people to visit during particular hours, to respect the sign on the door, and ask them to bring what’s needed to support the patient and advocate. Ask them to stay only for a certain amount of time or to do beneficial things with the patient such as read to them, massage their feet or play requested music. Suggest they leave something to "prolong" their stay and presence such as a card, flowers, stuffed animals, book, or something else the patient enjoys.
  • Request frequent patient cleaning, changing of sheets and clothes and other services. If your person is less available so they can rest, some of these less "vital" duties are often forgotten or passed over, so ask for them when needed and desired, knowing you may have to wait.
  • Be patient. There are other patients with needs, too, sometimes in emergency, and so nurses might not be available exactly when you want.
  • Be considerate. Health care providers in hospitals work exceedingly long hours and in high-stress situations, plus they really do have your patient’s best interests at heart. Know that most hospitals have their practitioners work 12-hour shifts several days in a row, which can be wearing indeed!
  • Don’t hesitate to massage the patient’s hands, feet, legs, and arms. Ask permission first, but generally touch is missing in western medicine (except for prodding and poking that is!). Most people love just having their feet held and touch is very healing in itself.
  • Ask if you can use herbs or other alternative therapies. In a hospital the doctors will generally say they don’t want to know about it, meaning you can proceed, but they can’t legally tell you yes.
  • If you plan on giving herbs, know that people in critical or acute conditions usually respond well to herbs. But think simple – single herbs or small formulas. Make them into a tea with hot water (get this from the cafeteria or bring in a thermos) and give in teaspoon doses. In acute conditions, often a formula works quickly with one dose and then is not needed again as the condition changes. Be sure to re-assess the condition before administering herbs.

There are other considerations for hospital stays. One is about being your own advocate. The other two take serious consideration. If you choose to use one or both, I highly recommend you prepare them now so they are available if and when needed. One is a Living Will; the other, a DNR (Do Not Resuscitate order).

Be Your Own Advocate!

The only time I suggest being your own advocate is during non-hospital medical appointments and procedures. If you find yourself in the hospital without an advocate, certainly be assertive for your own needs as you are able. Perhaps even carry this list with you and let the hospital staff know which of these are your specific desires.

 

Living Will

A Living Will is a legal document that lists a person’s wishes and provides directives about the course of treatment to be followed by health care providers and caregivers. It is sometimes referred to as an advance directive, health care directive, or a physician's directive.

A Living Will may include orders regarding the use or refusal of life-prolonging medical treatments such as tubes, ventilators, and other medical devices. As well, it may specify what actions should be taken should the person no longer be able to make decisions due to illness or incapacity. As well, it may appoint someone to make such decisions on their behalf.

An example of a Living Will statement could be: "If I suffer an incurable, irreversible illness, disease, or condition that my attending physician determines is terminal, I direct that life-sustaining measures, which would serve only to prolong my dying, be withheld or discontinued."

DNR

If desired, also have on hand a pre-prepared DNR. This is a legal order that states, "Do Not Resuscitate" but allow for natural death. It’s generally used in such situations as a heart attack, stopping breathing or advanced cardiac support.

Find Your Advocate Now

I suggest you line up advocates for yourself now. Choose people you trust, who will be there for you no matter what, who have your best interests at heart and who care for you. Then give them this list so they have it on hand if ever needed in the future. I also suggest you determine whom you are willing to be an advocate for and discuss that with them now.

Be prepared. If you are admitted to the hospital, have your advocate called and if possible, take this advocate list with you along with any Living Will and/or DNR. Line it up with your siblings, children and friends ahead of time. Carry their phone numbers with you. Have the most important people know about any Living Will and/or DNR you have and give them copies. As well, tell your doctors ahead of time and give them copies.

If you are an advocate for someone, be sure that you are notified when they enter the hospital. If you can’t be available, find someone else who can care for them. Ask if they have a Living Will or DNR and act according to their wishes.

The better prepared you are for an unforeseen hospital visit, the better your chances of recovery and a swift discharge, or that for whom you are advocating. I know all of this may seem intense, nitpicky and too serious, yet it could save your life or the life of a loved one. May you be prepared with this information and may you never need to use it!

I hope this never happens to you, but it’s usually inevitable that one day either you or a loved one may end up in the hospital. This is most typical when caring for elderly parents, as happened to me in the last couple of years, yet you never know when you’ll end up there, too. And what we all need when in a hospital is an informed advocate. This can make the difference between life and death, as I just experienced.

My recent foray into the hospital scene when my mother became ill taught me this lesson. Generally, most practitioners there truly have each patient’s best interests at heart. They care, they love their work and they want to do the best job they can. Despite this, I have found the hospital system to be fractured; in spite of all the individual efforts made to save lives and heal people, it can actually cause the opposite: decline and death.

The major reason I see for this occurrence is at the very basis of western medicine itself: specialty-ism. In the medical world of microscopically dismantling the human body to discover how it works and to develop medicines for its diseased parts, the whole person is lost. The same arises in hospitals where there’s a specialist doctor for each system of the body who effectively helps that organ’s functions, but who also misses the rest of the body and personhood as a whole. This is great in terms of expertise, but if you are the patient, it could mean your healing process is not necessarily served, and even more so, it may make you worse.

For example, you may undergo a separate blood draw for each doctor, sometimes occurring every two hours and despite the fact that you might be anemic to begin with. Or you may have one doctor prescribe a medication that another doctor already knows doesn’t work or causes side effects, but that little detail didn’t make it into the records or the records weren’t read thoroughly enough, or the new doctor on duty decides to try that medication because it’s useful from his experience but in not knowing the patient, promotes side effects because it was inappropriate for that person in the first place.

This fractured system occurs within medical groups, too. The admitting doctor may belong to a larger association of doctors in the same specialty that shares hospital rounds on different days. A patient may see one’s personal doctor anywhere from every one to four days, but in extended stays, most likely will see a different doctor each day.

And every time there’s a different doctor, nurse, or technician, he/she has to fully read and understand the records and get to know the patient’s history all over again. That means the patient needs to catch them up so they aren’t experimented on, which if one is in the hospital in the first place can be quite trying and exhausting for any patient. And what doctor really has the time to fully catch up on all those new patients’ histories anyway? Plus, they may know the condition they are treating, but not the person in whom they are treating that condition!

Besides the lack of one person who oversees the entire case or patient for consistency, the best possible care, and to prevent wrongful experiments (yes, there are often "hospitalists" assigned to do this, but often they are the attending physician – the original admitting doctor – and neither will be present or available 24/7 let alone maybe four days in a row), there is one other aspect to hospitals that promotes decay rather than health: lack of sleep and rest.

Hospitals are NOT restful places; quite the contrary. Nurses, doctors, technicians and more have legal obligations and must regularly obtain stats, perform tests, and monitor or treat their patients. This includes in the middle of the night. It’s common for a person to be wakened every two to three hours regardless of the time of day as everyone performs his/her necessary duties. Doctors and nurses will attest to this. One doctor actually told my mom, "That hospital bed will suck the life out of you."

Being in my mother’s recent hospital room felt to me like a revolving door to Grand Central Station. During the day someone showed up almost every 20 minutes! That sounds like great care, right? In one sense maybe but it was also extremely disruptive. The people who appeared day and night included:

  • Various doctors
  • Various nurses
  • Nurse’s aids
  • Charge nurse
  • Physical therapists
  • Other therapists such as breathing therapists
  • People who clean the room
  • People who stock the room with new supplies
  • Chaplain and his/her team
  • People who deliver the meals
  • People who pick up the meals
  • People who take you for tests
  • People who bring you back from tests

quietpleasesingDuring my mom’s most recent hospital stay, she was disturbed every night as well by a stream of people who poked, prodded and tested her until she was wide awake 24/7 for four days. As can be predicted after such treatment, she steadily declined until it disturbed her Shen[1]. At that point, the hospital sent in a psychiatrist to treat her!

That’s when I discovered that there’s actually a hospital diagnosis called "IC psychosis," usually experienced by one patient out of every three after five days in IC (intensive care) units. This condition results in a cluster of serious psychiatric symptoms caused by the loss of normal anchoring that arises from repeated interruptions, continuously lighted rooms and loss of night and day cycles. As a consequence, patients become agitated, severely disoriented in time and space, paranoid, delirious and possibly hallucinogenic, all signs of Shen disturbance!

And what is one great factor in restoring Shen? Sleep!

In the hospital where I most recently spent time, there was a photo on the walls along all the corridors. Several practitioners stand in it, all with fingers to their lips, indicating travelers to "Shhhh" their way along. Indeed, most of the corridors were quiet (except when equipment was shuffled along several times daily), but inside the room itself, it wasn’t quiet at all. I mean even the chef, who had recently been hired and wanted to provide the best possible food every patient would like, stopped by twice because my mom wasn’t eating the meals!

This is good-hearted and well meaning indeed, BUT it sure is disruptive to the healing process. Sleep is, after all, the Great Healer, and this is one medicine definitely missing from hospitals.

All of this is to say that until the hospital scene changes, it’s important to have an advocate lined up to help you or your loved one heal AND it’s key to be an advocate for others. In general, an advocate is someone who:

  • Gives support
  • Speaks on the patient’s behalf
  • Promotes the patient’s best interests
  • Helps get the patient’s needs met

Stay tuned for Part II to learn many of the important roles of an advocate can fulfill along with information on Living Wills and DNR’s ("do not resuscitate" legal orders).

If you know anyone who might benefit from reading this blog, either now or in the future, please share it! And don't forget to leave your comments below.



[1] Shen reflects the entire physical, emotional, mental and spiritual health of the body. It includes the capacity to think and act coherently and appropriately, the personality’s magnetic force and the joy to live life. It is distinguished by the sparkle in the eyes, an overall vivaciousness and a will to live. Housed in the Heart, Shen is our enthusiasm, innate vitality and charisma. Spiritually, it is the dynamic faith, vitality and force of our personalities that are able to surmount obstacles and make things happen.

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