The Cycles of Life Part 7
Posted on: 2016 09 13
Throughout these Cycles of Life posts, I have mentioned “list” several times. In this age of technology, I must admit that I am a fan of good old-fashioned paper. Don’t get me wrong, I love my smart phone and use it all the time but I also have a binder and a notebook for each of my parents. I find the binder is very helpful at doctor appointments and especially during a hospital visit or stay. The binder allows me to add, maintain and find their health care information easily plus I don't need wi-fi or a data plan to use it. Each binder includes: name, address, and phone number(s), complete emergency contact information, copies of health insurance information, complete list of all health care providers and their contact information, list of current medication(s) including what the medicine is for and list of medical issues/concerns. I also keep copies of the advance directive and the DNR/COLST in each binder. I divide my binder into sections: by each health care provider, medication and pharmacy information and hospital visits. For regular doctor appointments, the after-visit summary is printed and placed into the binder along with any other information/notes from the visit. This is what works for me. If you help with your loved one’s with their finances, the binder also becomes a valuable tool for cross-referencing medical bills and insurance statements with doctor visits, etc. For hospital visits and stays, I cannot stress this enough: write everything down. Begin the minute you walk in the door. Use whatever method works for you, paper or electronic, but do it. If you have entered via the ER and your loved one uses Medicare as their primary insurance, make sure you are aware of their hospital status: “inpatient” or “outpatient”. Even if they stay in the hospital overnight, they may still be considered an “outpatient” if they have not been admitted. This distinction is important to know so you need to ask. Here is a Medicare publication that helps define these terms and explain how this relates to coverage. Time usually moves at the slowest pace you have ever experienced during a hospital stay. I keep track of the room number and name of the floor the room is on (patients are moved around), the name of the doctor overseeing the care, how often and when is that person around, will that person change (weekly or daily) and if so what is the name of the next person coming on. I always write down the name of anyone I speak with and what their position is. I ask what tests are being run, what the tests are for, when the test will be run, when the results will be ready, names of medications that have been given, what the medicine is for, what the diagnoses is, how certain they are, what other specialists are being called in on the case and why, and what happens next. Take as many notes as you can in the moment and copy them over as needed- did I mention that time moves very slowly at the hospital? I also research what I can online and write down any questions that arise from my research. I am guessing doctors probably dislike Google however the internet can be a valuable tool if you are thorough and diligent with what you take away from it. When you get a chance to actually speak with the doctor, you want to be prepared as time is usually short and you need to maximize that time. I have to add that most health care providers chuckle when they see my binder BUT they take me quite seriously. In addition, you may have to advocate for your loved one. If you receive conflicting information, you can give specific examples and ask for clarification, over and over if need be. Lastly, things change, sometimes rapidly. There is a lot of information to manage and writing it down is a great way to keep up with it. During a hospital stay the nursing staff is an exceptional resource for you; develop a positive and respectful relationship with the nurses and LNA’s as they do the majority of the actual care. Communicate information about your loved one to them, they can utilize it to provide better care and patient cooperation. If your loved one has any issues, you can help resolve them. As with all aspects of care, communication is key. If you are not able to go to the hospital, write down everything you learn over the phone and be very assertive about being kept in the information loop. The doctor will call you when their schedule permits so if your information and questions are at your fingertips, it will be a more productive conversation. You may have to call many times each day, always try to speak to the nurse caring for your loved one as they know what is going on. Everything from above applies. Be patient, determined and kind-it will go a long way. Hospitalizations are just another part of the cycle, approach them with a strategy and it should help. Knowledge is power and allows for better planning and support. The reality is that my binder system also allows me to have some control or at least to create the illusion of having some control over a situation where I have no control- my loved one aging and their health declining.