Since we’re on the topic of eternity, let’s talk about the pile of paper work I have at all times on my desk! The only other visible picture I have of eternity besides my paper work is my laundry, but that is a topic for another day! Those of us who do the paperwork needed for our child (or parent) with special needs is quite aware of the hours it takes to oversee this responsibility. Unless one has done the paperwork needed for one with special needs, they’ll never appreciate the time, energy, and investment it takes or what it took to get the services needed that require record keeping. (We chose never to move from our county because of the paper work and time it would take to get our son cared for in the way he is presently.)
We are often heard to say, “In case I die,” or “when I die,” around our house. It’s not that we’re trying to be morbid; we’re trying to be realistic. We are in our mid 60s. While we still feel young in our mind, we notice there are things that don’t come quite as easily as they used to and we are mindful that one day one of us will be left alone. For that reason we have purposed over the course of our marriage to be sure we each know how to care for our personal finances, figure out where the insurances are, be mindful of our financial information and who to contact when the first of us passes into eternity. We each have primary areas of responsibility but have also been very exact at keeping records as well as the details of how to do reports, who to call, how to handle certain things, etc. Additionally, both of our daughters know where things are so that they would not be left scrambling in a situation that might take us both at the same time. Hard thoughts but hopefully this makes it a bit easier in a time of need.
We recommend a few things for every household, but it’s even more important in a household caring for one with special needs. Our book of important information for our son is a huge 3-ring binder that is about 8-10” thick and has records from birth. Some things are saved for a year, but some things will remain in that binder and will go with him someday when we are no longer here. Here are a few of our recommendations and thoughts for you to consider while there is still time:
Keep hard copies of necessary records others might someday need:
- Names of all doctors, med techs, aides, etc.
- Meds and what each is for and the dosage
- Appointments and results, etc. as well as when to return
- Meetings and when they generally take place (school, work, etc.)
- Family discussion notes
- Therapy: names, places, etc.
- Social security - all the info that you have for this person
- Bills: paid, outstanding, insurance, etc.
- How to fill out certain forms (give a detailed listed description) because while it comes easily to you (whose done it for years) someone will have to do it for a first time someday.
- A list of what needs to stay, what needs to be tossed (and how often) – example: work papers from our son’s workplace we keep only a month. Things like his payroll we keep like we do anything for ourselves for 7 years.
- Other things will come to your mind. Start a list. Make a plan!
Having all this info at our fingertips is helpful to be able to look things up quickly, reference something we are questioning, and to be honest, showing up to a meeting we see as possibly challenging, we know it looks intimidating and others know we mean business because we have all the records we need right at our fingertips. Another great resource is Jolene Philo’s The Caregiver’s Notebook that is a well-organized tool to help us care for a loved one. It takes the worry out of some of the care we provide when we know some day someone will need to take over.
Start now while you are healthy and able and not in crisis mode (though many of you live in crisis mode), or the best possible time you can in the very near future! It will ultimately help you, but it will be immeasurably appreciated by whoever takes over this responsibility someday.
Dr. Joe and Cindi Ferrini are authors, speakers, and bloggers for several blogging sites on family and special needs. They speak nationally for FamilyLife Weekend To Remember Marriage Get-a-Ways, authored Unexpected Journey – When Special Needs Change our Course, and have been interviewed on Focus on the Family, FamilyLife, and various other radio and television venues. Connect with them at www.cindiferrini.comand social media at: www.facebook.com/cindi.ferrini, www.facebook.com/UnexpectedJourney/, www.facebook.com/MyMarriageMatters/