Now 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
Care for the Caregiver – Things You Can Do to Help Yourself
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).
In 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.
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).
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.
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."
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.
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:
During 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. 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:
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.
 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.