The Caregiver's Journey
Okay, the next thing that we’re going to cover is called case management. Now I know that sounds pretty clinical. Of course, what I mean is how you manage or coordinate the care that your family member receives. Now a big part of that is how you organize their medical and their military records.
I cannot stress enough the more organized you are, the better. Being organized will help you have so much more control when you’re making those decisions, and it will ensure that you have access to accurate information. It’ll also help reduce your stress by having you know all that care-related information that you need just in one place.
It took us awhile to get organized with all of Sam’s paperwork. At first we were… we were a mess. Now, we’re much better at it. We keep a notebook or file for everything.
Every time Sam gets a new medication, they give us a sheet that lists the side effects and all of that. That goes in the medication slot. Every time he has surgery, that information goes into the surgery slot. Julie actually created a file on the computer of every surgery that he’s had, and what they’ve done, and the dates. And I’ve documented every seizure that he’s had. We carry that information with us so that when someone asks about Sam’s medications, or about his surgery or seizure history, it’s right there.
That’s really excellent, Carl and Julie. I knew that your experience would be helpful to the others.
Now you may end up with several notebooks and file folders to help keep the information together. Just be sure to keep all medical information, and like Julie, you may want to enter information into a computer file. That’s a great idea.
So what else should we have in the notebook? I mean, are there certain things that we might need, or that we’re likely to be asked for?
Well absolutely. I mean that’s a really good question, because your notebook should include sections for the personal and military information, emergency contacts, any allergic reactions that he might have had to any medications.
Another really important thing to have is to include Clayton’s medication log. Be sure to write down all the medicines that are taken, the dosages, the dates, any side effects, any problems. You’ll find a form that you can use in your Guide for Caregivers.
You’ll also want to keep copies of all of his medical records, including all the reports, tests, scans in a section of the notebook. Now you’ll need to ask your care coordinator how to get copies of those test results. But you… you can put your CT and the MRI scans of the brain on a CD, you can keep them right there and you can share with future providers.
It’s also a good idea to include three-hole punched paper right in the notebook. And that way, you can use it to take notes and then insert the sheets right in the right place.
And your notebook should also include a resources, information section, that’s where you can keep the forms and the information you receive at appointments. But and finally, you’re going to want to keep a calendar of appointments in the notebook, and you’re going to want to have that with you at all times.
I’ve also started to accumulate paperwork about benefits and stuff. Should I put that in the notebook, too?
Oh yes. Yeah and you may want to keep another notebook for medical and family benefits or Medical Evaluation Board and the Physical Evaluation Board information. You’ve probably heard these boards referred to as MEB and PEB.
These benefits files are important because it will help you when you apply for financial aid, or a job, or more medical care. So you’ll want to keep a back-up copy of that file too just in case it ever gets lost.
Now your benefits file could include things like Social Security numbers, military records, insurance cards, Power of Attorney, driver’s license, birth certificate, oh and your marriage certificate that should also be included. It’s also a good idea to keep school records, work records, tax returns, a list of assets in the second file. We’ll talk more about benefits in a later session.
This is going to be so confusing. I don’t know how I’m going to keep all of this straight. I mean we don’t have family around here, so it’s just me.
Oh Megan, I know this can be overwhelming, just try to keep in mind that there are so many sources of support. You’ve got the doctors, the therapists, caseworkers, counselors…all the professionals that are there to help you every step of the way. You’ve got friends, the chaplains, support groups like this. You know part of what we’re here for is to establish a support network. But we’ll talk more about that later as well.
Now one more thing that I wanted to cover today, and that’s… well paying the bills, handling the finances. If your family member with TBI was responsible for those things, you should make sure that your name is on all the accounts, that you’re authorized to make transactions. That can be challenging sometimes. You know it might be necessary for you to obtain legal assistance to do this. But one other thing that you might want to consider is online banking and bill paying that can definitely streamline things, especially when you’re away from home.
And streamlining things…making things easier for your loved one with TBI and for yourself that’s … that’s such an important part of being an effective caregiver.
Tracy, right now, it just seems like during the day I’m always with Clay and the doctors. I mean do I need to pay all the bills and deal with the accounts right now?
Well, this can be very time-consuming, but it’s important. You need to get started right away. Just see if you can set aside a block of time each day, make those calls, complete the paperwork that you need to. Just… just do the best you can that’s all you can do.
Look I know that you have so much going on right now, but I ask that you try to take some time this week to take care of yourselves. Get plenty of rest, you’ve gotta be as sharp as you can to take care of that family member. Now hang in there. Okay.
So are there any other questions? Nothing else. Okay. So I’ll see you next week. You take care! Call me if you need me. Okay.