One Bite at a Time

BY LAURA GEORGE

You are driving home from the hospital. Your loved one has just been given a diagnosis that involves the word disability. Your brain is overwhelmed with the resources needed, the information given and the wherewithal to sort it all out to make the future return to its normal daily hum.

That is easy to say and read, but I remember that is exactly how I felt when I was driving home from the hospital with my newly-paralyzed husband. I was overwhelmed, exhausted and confused as to which group to contact first. I was not sure if I even had accurate contact information. The hospital had given us at least four inches worth of material to read, most of which included fun things to do. We all like fun! But for me, it seemed that being able to incorporate the word fun into my daily vocabulary, as a newly-designated caregiver, would be far out on the horizon of life.

Where does one start? There's a joke that asks, "How does one eat an elephant?" The response is that it is eaten, "One bite at a time." That is how we are going to overcome this task: with the creation and organization of resources, one section at a time.

PUT TOGETHER BOOK

Within the first 24 hours, do only what is necessary to help your loved one with their new disability. It is important that both of you slow down, get some rest and have a few moments to clear your heads. Within the first 24 - 48 hours, put together an organizational binder. In this binder will be a location to tape all the doctor or medical professional business cards that have been collected. Three holed pocket folders should also be added to hold important papers that have been collected through the diagnosis. Include a zippered pouch with tape, pens and pencils to tape in the cards, write and highlight notes. Also, include lined notebook paper to write down important information. Within the binder, sections will be created for prescriptions; medical supplies and equipment; nursing company, caregiving, nursing home and rehab contacts; financing; and a creative section. This completes the first bite in to the elephant. Yummy!

prescription

In the first week, while acclimating to your loved one's new disability, spend the time to become comfortable with how the day will now be processed. Identify all the medical supplies that require a prescription (hardware and software) to be used daily along with any additional necessary needs. Start identifying the suppliers, their insurance requirements, and how the product will be obtained. Include storage concerns such as shelf life, refrigeration, chemical, and amount. Consider if it is something that can be obtained at local grocery store, drug store, online, or via a resource that was provided by the medical professional working with your loved one. Some drug companies have financial assistance programs if the cost of the prescription is challenging. This section would be the second bite called prescriptions.

medical supplies/ equipment

When moving from one topic (or bite) to the next, it is important to breathe and relax. There is no need to panic. Let us smile as we take another bite creating our third or medical supply section. Feeling overwhelmed and slightly panicked because the medical supply company is not delivering their supplies or working with your insurance company means wisdom and creativity can now strike for the creation of your own resource library, as each company called can be listed along with their credentialing for being able to provide the items and services needed. Make sure that the acronym "DME" is listed in big letters at the top of the page with the definition of "durable medical equipment" underneath, to make it easier to find needed supplies and equipment. This becomes the third section in the book.

nursing/rehab/ caregiving

Keep in mind that the medical professional, hospital or caregiving company who is becoming part of the support system, is also happy to receive additional calls asking for assistance. Nursing companies, personal care assistants, and in-home therapy assistants are great resources to get questions answered and more education on the topic. Unsure of how to find a good nurse, PCA or caregiver? Reach out to the hospitals, local physical and occupational medical licensing offices, or any national organization that provides education, information and questions to use in screening the prospective in-home assistance. Speak with everyone to get referrals and knowledge about the medical professionals to be employed. Remember to include yourself by arranging for respite coverage using the method above. Take a bite off the elephant's ear for putting together the fourth section!

finances

Finances can always be a tough bite to swallow, yet when biting off the elephant's nose, it will be sweet. Hospitals, social security offices, financial institutions, and yes – even politicians – will all know of resources to help with the financial costs of paying for the equipment and supplies to help your loved one return to living independently. Automobile manufacturers even have dis count programs for adaptive equipment. To find those, put the words, "Disability Discount" and a car manufacturer into the search engine on the Internet and the direct link to the program should pop up. Another good financial resource is the county assessors' office for the possible Homestead Exemption you qualify for, by having a person in your home with a disability. (This is regardless of age and for retired military too!) Boy, that nose tasted good!

national/local resources

In the sixth section, which might be started about three to four months after diagnosis, gather the specific disability and non-specific disability support organizations that can help with the child, adult or elder adult's disability. Some national organizations may also have centers on a statewide or even local level. For some types of disabilities, there may be more than one national version and it would be recommended to call them all to see which can offer the best support. All of these can be contacted for assistance and help with finding reputable companies who can provide the medical supplies needed to assist with administering medication, toileting, breathing, doctors, financial assistance and more. Though some organizations are not disability-specific, they do easily address a wide variety of concerns, regardless of age and many times can answer questions that others may not know the answers to. Do not forget to contact the faith-based communities. Many of these also offer a wide range of support services and sometimes do not even have faith-based qualifications.

creative

All four feet have now been artistically eaten off. Your loved one with a disability is settling in and beginning to move forward in life. Now is the time to start the last section in the binder that accommodates outside-the-box thinking. This is the section where adaptive clothing, legal assistance, accessible camps, education, barber shops, hotels, conferences, dentists, parks and more can be placed. In this section, legal resources can be added.

emergency preparedness

This last section is very important; it is where all the friend, family and additional support contact information will go. Include the local fire department phone number and, depending on the severity of the disability, feel free to reach out to them for an in-home visit to become familiar with your loved-one, their needs and medical equipment that may need to be taken in an emergency. Add your local health care liaison who can be found through the local health department. Make sure to contact with the county emergency management office to be placed onto the disaster notification list to keep everyone safe.

Most of the elephant should be eaten by now. The nose, ears, feet and tail have been chewed off! The sections in the binder are neat, full of resources and organized in a manner that is quickly and easily accessible. This binder is your spectacular library and is highly prized for its information. The feelings of fear, panic and lack of resources are no longer overwhelming. It is now a year later and many elephants have been eaten, one bite at a time.

What follows is a list of resources that most people have not heard of beyond the standard ones shared. My favorites have always been the uncommon, unheard of, and unique that making taking bites out of an elephant easy! •

ABOUT THE AUTHOR: Laura George is the Emergency Management Disability Liaison, and sits on the National Center for Independent Living-Emergency Preparedness (NCILEP) Committee. She has spent the last 13 years volunteering her time, as well as consulting, sharing and presenting on the idea emergency design needs to include everyone and not just be taught to everyone. She has presented and sat on committees before local, county, state, regional/national organizations from a caregiver's point of view. She is an author, presenter and caregiver.