Call to Action
You or someone you know may be dealing with a chronic medical illness, disability, or terminal diagnosis. Extensive surgeries, treatments, therapies, and life changing decisions await you. Now what do you do?
Living a life that is surrounded by chronic health illness and disability is a game changer. But, it does not have to be a life lived in the anxiety, fear, and despair that oftentimes accompany chronic health illness. I want to encourage you today. You can take steps to “create a new normal”. The changes in your life can be used for good.
Create an Action Plan
Begin to organize the personal health information for you or your loved one. You will receive information about the illness, treatments available, medications to take, medical equipment needed, supply companies, in home health agencies, etc. The Coming Home Medical Organizer will help you to organize the information and keep everything in one place.
Build your care team
Chronic illness is a marathon. You will find the journey a little more enjoyable when you surround yourself with people who are there to help you. Find the medical staff that is there for you; listening to you, and willing to work with you to involve you in the process. Find the in home nursing staff who will help you care for your loved one like they were their own. Open the door to your family, extended family, friends, and church families to come in and help you with the day to day care and the emotional and spiritual care.
Find out what help is available
You will want to take some time to research your local and state organizations on what services may be available for your loved one. Also check with your doctor’s office and/or hospital. They may have social workers available for you to talk with.
Know your insurance
Find out what your medical insurance will cover and what your out of pocket expenses will be. Knowing this will help you to be more prepared. You may need to look into a into a secondary medical insurance or a state or government aid like Medicaid or Medicare, Social Security Disability, or a disability insurance.
Your first instinct may be to isolate yourself. The amount of medical information regarding the illness, treatments, medications, doctors, daily care, etc. can be overwhelming. But I encourage you to stay connected. Find a support group, disease specific organization, or a church group where you can plug in and recharge your emotional, spiritual, and physical attitude.
Use the Medical Organizer
Leave Worry Behind
The Coming Home Medical Organizer is a simple way to organize the personal health information for yourself, your loved one, and your family. The forms are flexible and easy to use. They are set up in such a way to keep the information to one page. One of the main reasons this was done was to simplify your time spent with your healthcare team. When you go to a doctor’s appointment you are asked a series of questions; they are usually the same questions like: what is your name, contact information, insurance information, allergies, medication list, etc.
With having the information already written down it is easy to answer the question with your page that you have already put together. For example: The doctor’s office asks you, “Are you taking any medications?” You hand them the medication sheet that you have already filled out ahead of time, and they will make a copy and put it in your file.
It is easier for the medical staff to read one page then it is to read a series of pages. Now you are free to talk about the specific questions you have for the doctor. You are also more engaged in the conversation and able to be an active participant because you are not sitting there trying to remember your last doctor visit, last blood draw, or the last time you took your medication.
Gathering the information for your health records will take some time. There are many layers to chronic illness and disability. As you put your Coming Home Medical Organizer together focus on one form at a time. I would recommend the Current Status, Medication List, and the Emergency Room forms first.
The importance of organizing your personal health records is to keep things current and up-to-date. Having everything kept in one place is especially important for those unexpected emergencies. Writing things down is very helpful so that you do not have to go off of memory. Your records will be helpful in maintaining a history so there will be less chance for repeating unnecessary tests and medications. Helpful in establishing a time line while creating a baseline. Knowing “when” and “how long” are important pieces to the puzzle. It is a great way to keep everyone on the same page.
In having the information readily available you will want to store it in a way that is best for you. This could be handwritten forms kept in the binder, personal health information typed on your personal computer and kept in a word document or on a pdf file. Download the forms and create your own organizer. You can also keep your medical information on our flash drive, giving you the capability to access your files from any computer or smart phone.
As you utilize your organizer you will be able to shape it to the needs of your family. You can write out what their day looks like; therapy schedule, medication schedule, or a daily schedule. What do their personal care needs look like throughout the day. If you are organizing information for your elderly parent then you can write out what their general care needs are and how that will impact your day. For example, housekeeping, laundry, meals, and shopping.
Life still goes on
One of the most important reasons to complete the task of creating and organizing your personal health information is because of just that. Life still goes on. Work still needs to be done. Your family still needs to be raised. Your marriage still needs to be nurtured, and your spirit still needs to be fed.
Set your expectations
Real or perceived your expectation will be the belief on which you will base all of your care, compassion, and decisions in caring for your loved one.
Stay hopeful. Being a caregiver for your loved one can be hard and difficult. If you are not careful chronic illness can lead you down a path of anger towards your loved one from an illness that was out of their control. You can be full of bitterness and resentment because your child is unable to care for themselves. But, if you can stay hopeful; hopeful that one day a cure will be found, hopeful that one day your child will overcome that obstacle, or hopeful that good things are going to happen to you. That daily seed of hope will bring about new insights and fresh perspectives all from a view of perseverance, courage, and strength.
Stay mindful. Caring for the chronically ill can weigh you down. Your time is spent on advocating, searching for answers, trying to find the right doctors, therapists, or medicines to help you manage your health on a daily basis. Over time, your once positive and determined attitude can become negative and weary thus lowering your expectations of a great life. Stay mindful of the many resources that are available for you as the caregiver or for your loved one. There are wonderful agencies, not-for-profit organizations, faith based communities, support groups, and others who have resources or can help you find the resources that you need. Stay mindful of your family and friends who love you and want to help you. Stay mindful of the fact that each day is a new day to begin again.
Stay strong. Caring for those with a chronic illness or disability has many layers. You will need strength for the road ahead. You will hear all about what you cannot do. Doctors will tell you they cannot help you, there is no cure, or there is no treatment. They will tell you your loved one will never be able to do “this” or you can never do “that”. Providers will tell you that you do not qualify for certain benefits or waivers. In those moments stand strong. Focus on what can be done. Focus on what your loved one can do. You may be a caregiver for a week, a month, a year, or a lifetime. You will need strength to help your loved one in every way possible. You will need strength to make those tough decisions. You will need physical strength for the day to day care. Stay strong.
As you complete the task of organizing you will begin to ease the worry, release the anxiety, and free up your mind to take the next step.