Becoming the primary caregiver for a loved one can be a real challenge. You must learn to balance work, family, and your own needs, while caring for someone else and fulfilling some of the responsibilities he or she used to have. Caregiving requires skills that you may not be familiar with, and demands the ability to manage your loved one's care almost as if it were a complex business project.

Our Caregivers Handbook provides an overview of the different tasks involved in caregiving at home. You will also find some guidance about how to prioritize your caregiving responsibilities, and tools to organize supportive family members and friends who may be able to help. Download the Complete Chapter.

Below is some information about organizing medical records, tracking treatments, and managing medications- some critical tasks of a caregiver: 

• Organizing Your Medical Records
• Managing Medications
• Tracking Treatments & Side Effects

Getting Organized
When it comes to managing your loved one’s health care, the more organized you are, the better. You’ll be more prepared and have more control when it comes to making decisions, preventing medical errors, and having access to accurate information.

A great way to become organized is by keeping a health care binder. Many caregivers say that these simple books kept them focused, organized, and feeling in control particularly during emergency situations. To create a binder, go to an office supply or drug store and purchase:

• A large three-ring binder in which to keep all information
• Two or three packages of dividers with tabs so you can divide your binder into separate sections
• Two or three storage pouches (8 ½ x 11) that are three-hole punched, one with slots for business cards. One will hold CD-ROMs of your scans, while the one with card slots will hold business cards of your medical specialists, care providers, pharmacy, etc.
• Lined notepads that are three-hole punched so you can take notes on the paper and insert the sheets in the appropriate sections
• A three-hole puncher

Here are some suggestions for organizing your sections, made by Dr. Paul Zeltzer in his book Brain Tumors: Leaving the Garden of Eden:

• Pathology reports, MRI and CT scans - these reports contain the most critical information about the tumor and diagnosis, and will direct the treatment options. Ask your doctor for a copy of scans on a CD-ROM or film, so you can bring them with you if you get second opinions or seek new treatment. 
• Lab reports and blood tests – having copies of these on hand will allow you to quickly refer to them without having to ask the nurses or doctors to search for them.
• Notes and questions section – this is where you can write notes while at appointments, or keep a file of questions you need answered by the doctors.
• Medication log (download form) - a blank medication log on which you can fill in the medications being taken, dosages, dates, side effects, problems, who prescribed them.
• Treatment log (download form)- the form on which you can fill in the treatments your loved one has received such as radiation, surgeries, chemotherapy - including the dates, side effects, problems, doctor's information.
• Resources and information - this is where you can file the information/forms you've received or signed at appointments.
• Calendar pages (download monthly or weekly form)- a blank calendar template that you can copy and fill in with dates - include medical and treatment appointments, home-care and therapy schedules.
• Health History (download form)- you can record important health information such as the patient's insurance policy number, emergency contact information, a history of other serious illness, allergic reaction to medications, or another condition that he or she is currently being treated for.

Managing Medications
Living with a serious illness usually means taking multiple medications to treat the illness and side effects of treatments. Many patients take herbal therapies, vitamins, and supplements as part of their medical regimen. No matter what type of pills your loved one is taking, it is important to keep track of what is being taken and when. The majority of medical errors in this country are related to mistakes in medication usage . Mistakes in the type of medication taken, the wrong dosage, or an interaction between drugs can lead to severe health consequences or worse yet, death. The best way to prevent this is to keep track of your loved one's medication regimen in an organized way.

Make note of these important tips for managing medications and preventing errors:

1. When you get the prescription from the doctor, make sure you can read the drug name and dosage clearly. If you can’t, ask the doctor to print it out clearly (this will guarantee the pharmacist has the correct information).
2. Ask the doctor what it is for, what it does, and what to do if there are side effects.
3. Make sure the doctor is aware of all the other medications including supplements and herbal products that are being taken in case there are possible interactions.
4. Maintain an up-to-date medication log with all prescription and non-prescription items (including over-the-counter medications like antacids, supplements like vitamins, protein powders, herbs or other "holistic" treatments).
5. On your log include the name of the medication, dosages, medication schedule, the doctor who prescribed the drug, what it is for, and any side effects experienced.
6. When picking up the prescription, make sure the order has your loved one's name on it, and includes the correct pills at the right dosage. 

Tracking Treatments and Side Effects
Once your loved one returns home after having treatments like surgery, radiation, or chemotherapy, symptoms or side effects of the treatments may occur. Some of these issues may be resolved by speaking on the phone with a nurse, and some may require follow up visits with the doctor. It is helpful to keep track of the treatments that were given and the symptoms or side effects that occurred in the treatment log.

If your loved one is experiencing pain at any point, you may want to print out and use the common Pain Scale (download form)to rate the severity, and make note of when it happened so that the doctor can identify the cause and possibly change treatments or follow up with a different procedure.
 
Between physician visits record the following types of information in your treatment log :

• medical treatments, procedures, and tests with corresponding dates
• side effects of treatments with the time and date of occurrence
• frequency of any seizures, brief descriptions, dates of occurrence
• pain rating scale from 0-5
• results of tests taken: blood pressure, blood sugar levels, seizure medication blood level
• any symptoms out of the ordinary: pain, fevers and night sweats, nausea, lack of appetite, insomnia, fatigue, confusion, and anxiety

Additional Resources