I recently talked with a friend who is dealing with cancer. She is in her late 30s and when diagnosed with cancer she had no clue where to start. She was overwhelmed and her doctor raddled off her diagnosis and her next steps and that was it. Confused, yet determined she spent hours on the internet learning about her condition. The she stumbled upon a complementary medicine website called Believe Big . She said the page called first steps immediately reduced her anxiety, gave her hope, gave her direction and a way to get started. Our mission is similar. We want to help elders and their families by giving them the guidance and the tools to navigate the health system, gain control and confidence and live free.
What I noticed in the Believe Big was a couple themes:
- Sources of encouragement (books, writings, etc.)
- Guidance (make appts with three doctors to interview them before choosing, keep a note book, etc.)
- Letting the reader know they are special and important and not just a number
- The reader has a responsibility
As I think about the stories we heard we have identified our first steps:
- Its starts with you! Your are the most important person in your care. It is about your wishes not the wishes of someone else. You deserve to be in control and below you will find tools and guidance to take control of your health and be well and get well at home. This also means you have a responsibility and the most important role in your care. You must make a decision and if you choose to make that decision with the help of your loved ones you can do it and we have a list of resources and tools that will help you. So the now if you want to join this journey to independence, freedom, peace of mind then read on.
- You are not alone. Enlist the support of a friend or family member. Who is someone you trust and see or talk to everyday? They will know you best. Write down that person's name? This is your health companion. Ask them if they will be part of your team. Bring this spouse, friend or family member with you to every doctor, pharmacy or hospital visit. Let them know they are important to you getting and staying well at home. Just ask them if they can be an extra set of eyes and ears and make notes to questions you have and prescriptions your doctor, nurse or pharmacist makes.
- Listen to yourself. Ask yourself why do I want to get well? What is the thing I want to be able to do? To get back on the golf course or enjoy time with grand kids or be able to enjoy that cup of coffee with friends? And then use that to make all your decisions. Use this as your the thing that drives you to get well and stay well.
- Get confident in your condition. Before seeing a doctor make a list of questions to ask your doctor about your condition. Ask your health companion to take these questions with you on your visit and make notes on this paper. Think of being a sleuth that is trying to answer all those burning questions to solve the mystery. You should feel more knowledgeable and confident each time you talk to your doctor or pharmacist and you or your health companion should have filled out this page. Keep it as a record to refer to when you are at home. Here are some sample questions:
- Why is this happening?
- What can I do to improve my condition?
- What causes my condition?
- What is part of my body is affected by my condition?
- What do I need to learn to improve or control my condition?
- How will I learn this?
- Make a list of skills. Make a list of things you need to learn and who is going to teach you and when. It has been proven that the best way to learn is hands-on. Make sure the practitioner shows you, makes you do it, gives you feedback and allows you to do it until you feel confident. Its your right!
- Understand your personal routine. We have a tool to help with this. Think about what a typical day looks like When you wake up, what you do in the morning (coffee, breakfast), what daily activities. Once you know this then you are equipped to have the conversation with the doctor and together you can determine how and where his health prescriptions fit into your daily routine. Their is nothing more difficult than dealing with a health condition, being prescribed to make health changes (like take new medication, change diet or exercise) and also changing your routine. Knowing your routine and taking the changes one step at a time. Example a doctor might prescribe taking a certain medication at 8am before food but you might not wake till 10am...what should you do?) If your doctor knows this he should be able to help you fit the medication into your personal routine. Also understand where in your house does your routine take place, kitchen for making coffee, bathroom for brushing teeth, living room for watching jeopardy this will be important places to incorporate this new prescriptions and help reinforce them.
- Keep a list. Keep a list of your medications. We have found this could be the keystone of getting and staying well at home. Because your medications are usually associated with a specific condition, that affects a specific system in the body if you know your meds you know your health. And knowledge is power. This will also give you peace of mind in case of an emergency or when seeing multiple doctors and health systems. You need to be the holder of the master key so they know how to treat you safely and quickly. Having a master key allows you to avoid counteraction, double doses or taking unneeded medication. There are simple lists available as well as a tool we developed. Take this with you to the doctor, the pharmacist or in case of emergency. You hold the key.
- Find a friendly pharmacist. Find a pharmacist that is close, local and is willing to help. Most pharmacist will jump at the opportunity to review your medication and advise. This is what they are trained to do. With the good comes the bad now that alot of medications are mail order it is important to have a medication specialist on your team that can see across your health team. Sit down with them every six months to dispose of old medication, make sure you are being double prescribed (which is not only dangerous it is costly) and make sure there are no counteractions.
- Organize your medications. Have you ever asked yourself did I take my blood pressure pill today? I have done this and this is one of the most common challenges. Use a pill organizer to set up your weekly medication. Here is one our community found helpful Organization is important to indicate whether or not you took your medication. We also developed this nifty little tool to help indicate whether or not you took your medication. Most importantly find a method that works for you.
- Keep a record of your medical history. Don't you get annoyed when you go to the doctor and you have to fill out that stack of papers about your medical history and allergies. Or as the Director of a local Senior ER said "[in an emergency situation] we need Definitely comprehensive medical records ...Vaccination history is also important. End-of-life care documentation. This needs to be reviewed every 6 months because health changes. [also] they need to document surgical history." This gives you and your family the peace of mind that in an emergency the medical professionals will be able to quickly and effectively treat you and get you back to health! See our tool hear.
- Make sure your wishes are grant. Have an advanced directive and an assigned health advocate. You want to be in control even if you are not able to make a decision in case of an emergency. Plus your loved ones will thank you.
- There is encouragement. There are many places where you can find others who can empathize with you and have been through similar situations. Here are a few places to start looking.
Things we still need to explore.....http://www.jblearning.com/samples/0763743836/chapter%204.pdf
Health Belief Model
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