My family and I were celebrating the launching of an exciting joint family business venture. A nine hour ride, talking, planning, forecasting all the "next step" moments. We arrived in the city, and literally, just put suitcases in the house, and the phone rang. The news of a catastrophic illness, emergency operation, unexpected death are almost too large to digest in the mind, heart, and spirit. All are life altering, only the intensity of the situation changes.
My brother suffered a tragic head injury that the doctors expected to result in death immediately. It did not. Life changed dramatically for all of us who touched his life. We entered the world "called hospitals and medical professionals." Certainly this scenario isn't unique for my family only. I could be comforted if it were just us alone, as I'm not a proponent of misery loving company. But perhaps, we are not the only ones for whom sickness and/or disease has or is currently making massive withdrawals from the emotional, mental, and spiritual resources of people with an ill loved one. What do you do next? How do you continue breathing when you want to collapse also? How can you be supportive, an advocate, or coordinate medical care when all of your thoughts are on the "what if" question?
These are a few of the steps I took that made a drastic difference for all of us, starting first with his long road to recovery. Emotions: -- horror, terror, fear, anger, premature grief, paralysis are disconnected and certainly not uniform in either their appearance or length of stay. Give yourself permission to feel your emotions. However, don't expand the permission to be consumed by them. That's a luxury you don't have right now. Get two journals or notebooks-one to record all of the emotions that will regularly threaten to overflow your cup. Write! Write uncensored; just write. The second one is to keep track of procedures, services, medications, etc. You and your journal will become the bridge that ensures continuity of care between shifts, specialists, and possibly facilities.
The event itself is intimidating, and the first response is to retreat in deference to the expertise and training of the medical professionals in charge. This is the first error. The medical staff are not in charge. You are! Is this scary? Possibly. Is this a sign of mistrust of doctors or nurses? Absolutely NOT! This stance is clearly stating that you are a proactive participant and neither a spectator nor a bystander. This stance forces a conversation of more depth and discussion about choices, outcomes, and "what if" scenarios. You want conversations and a lot of them!
Now that conversations, not one, but many are beginning, what do you do next? You establish the expectation that you want them to make every detail painfully clear in a manner that you can understand. What if there are words, phrases that you don't understand like DNR, full code, palliative care, ICU, SICU, MICU, step down unit, occlude, SNF, acute hospital, {the list of medical jargon is virtually exhaustive}? What if your own career, professional training, or experience isn't in the health care field, how will you be an effective participant? Doctors and nurses provide patient care. Patient care includes providing clear information for the patient and/or caregiver to make informed choices. If something must be said multiple times for clarity, then they must say it multiple times, without the necessity of an apology from you for taking their time. I personally, rejected some treatments, and delayed others until I had absolute clarity about both the procedures and expected outcomes-positive and negative.
How do you accelerate your knowledge base rapidly and responsibly participate in managing the health care needs and services for a loved one or yourself? Do your own research. This is absolutely critical. Research falls into three categories, medical terms-diagnosis, medical terms-services, and medication. Use the internet between moments at the hospital to research information. Wikipedia.com does a nice job in providing an overview of medication and medical terms. Get a pocket pharmacology dictionary. This will be invaluable. If you can't leave the hospital, contact a local library and talk with a reference librarian. Give him or her the information you are seeking. They can convey it to you over the phone, fax it, copy it for you to pick up. I have found that librarians love to help others acquire information.
Relationship building with the nursing staff provides a fast and accurate way to learn quickly. Talk to them, not at them. You'll be amazed at the amount of time they will spend with you and their willingness to answer your questions. They know your first priority, and where your immediate focus lies. But, what a change in their attitude, tone, and conversation, when you take a moment to inquire about their well being also. My mother always said, "please and thank you will take you a long way in this world." Nurses, like doctors handle not just life and death circumstances daily, but life and death. A small seed of compassion for the weight they carry will reap more than a garden of benefits for you. LPN's and RN's, if you take the time to get to know them, will be priceless resources.
What if I want to consider alternative natural sources in addition to the prescribed course the doctor is following? Individuals each day face this question? They diligently seek information on other options when challenged to grapple with chronic medical needs, long term recovery, medication-benefits and side effects, less than favorable prognosis, and even alternative safe trusted homeopathic {natural} choices. It can be both a scary and difficult position, but one that doesn't have to either consume or overwhelm you. I think I must have unconsciously began to consider this option from the onset. So in addition to standard medical care, I decided to also use some safe reliable natural treatments while in the hospitals and longterm health care facilities.
Can you make certain that a catastrophic medical event doesn't result in catastrophic care? The answer is yes! One situation and one day at a time. You learn to pick your teams, dismiss teams, run countless "what if" scenario treatment options, and a host of other things OJT-while you're actively in the midst of everything. It was and still is on some days, tough. I took charge, or stated another way, took massive and immediate action, because this is what I do. This is what I assist others to do in both their personal and business lives. But the most important reason, is because my brother was counting on me. He knew I would be an immovable force on his behalf. Perhaps someone is counting on you. And, similarly, you won't let him or her down, either.
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