Fibromyalgia Caregiver Toolbox

Fibromadness 10 Tips For Caregivers

  1. Seek support from other caregivers. You are not alone!

  2. Take care of your own health so that you can be strong enough to take care of your loved one.

  3. Accept offers of help and suggest specific things people can do to help you.

  4. Learn how to communicate effectively with doctors.

  5. Caregiving is hard work so take respite breaks often.

  6. Watch out for signs of depression and don't delay getting professional help when you need it.

  7. Be open to new technologies that can help you care for your loved one.

  8. Organize medical information so it's up to date and easy to find.

  9. Make sure legal documents are in order.

  10. Give yourself credit for doing the best you can in one of the toughest jobs there is!




Patient File Checklist

The single most important thing you can do to function effectively as a caregiver is to create and maintain a comprehensive file of information about the person you are caring for. There is a variety of ways to create and maintain a patient file. Some people prefer paper, some electronic, some a combination of both. You can keep this information in any form that works best for you, although most people simply put it in a binder or folder. It doesn’t have to be pretty, it just has to work for you.

The important thing is that it provides easy access and can be efficiently updated and shared when needed.

Select a place to store the file that is logical to you – where you can grab it quickly in an emergency or on your way out the door to an appointment.

Keep it up to date. An outdated file won’t do you much good when you are standing in the emergency room at midnight!

What should go in the Patient File?

  • Care recipient’s medical history

    • Diagnosis

    • Physician Contact Information

    • Allergies

    • Health history (e.g. surgeries, other medical conditions)

  • Medication List

  • Insurance Information

    • Private medical insurance

    • Prescription plan

    • Medicare/Medicaid

    • Long-term care insurance

    • Dental and Vision Insurance

  • Legal Documents

    • Living Will

    • Durable power of attorney for Health Care (also known as a Health Care Proxy)

    • Power of Attorney for Finances

    • Contact information for care recipient’s lawyer

Medication Checklist


An up-to-date medication list is an important tool for the family caregiver and your care recipient’s doctor(s). People with chronic diseases or disabilities take more medications than any other group of patients. With the number of medications some patients take, the issue of medication management and can easily become overwhelming. Good health outcomes are three times less likely for patients who do not take medications correctly as compared to those that do.¹ Improper use of medications causes 18 million emergency room visits per year.²

1. Maintain an up-to-date medication list

  • Keep an up-to-date list of all the medications doctors have prescribed for your care recipient. Also, list over-the-counter medications and supplements. Be sure to list the name, dosage, and frequency of the medication, the reason for taking it, any dosing directions, the start date, and when appropriate, the end date.

  • For prescription drugs, add the name and phone number of the prescribing doctor as well as the pharmacy that filled the prescription.

  • Be sure to include your loved one’s name and your emergency contact information. Note any allergies, or other significant medical information.

  • Make multiple copies: one for you to carry; one for your care recipient’s patient file; one on the refrigerator for paramedics to find in an emergency; and one for the primary doctor.

  • A simple computer-based document is one of the easiest ways to keep the record current.

2. “Translate” hand-written prescriptions

  • Don’t be shy about asking all doctors to “translate” their handwriting, so you can have a record of what they prescribed and why

3. Write the condition treated on each medicine bottle

  • You might find that your care recipient is taking three different pills for the same condition, each prescribed by a different physician. That may be exactly what is needed, but it is definitely a red flag to alert you to ask questions.

4. Use the same pharmacy when possible

  • If you do, there will be an official record of all prescription medications over an extended period. This can be a vital timesaver during an emergency.

  • Develop a strong rapport with your pharmacist and let him/her know you value their advice. The pharmacist is a great resource. Ask your pharmacist’s advice about over the counter medications and if they may react with prescription medications

5. Understand potential side effects and interactions and monitor interactions

  • Ask the doctor and pharmacist about potential side effects and interactions with others drugs, vitamins, or foods.

  • Learn what to do if a dose is accidentally skipped

6. Come up with an easy way for managing medications on a daily basis

  • Use pill boxes or other technology to monitor and manage doses

  • Use auto-refill programs – when available

What Should be on the Medication List?

  1. Name of drug – generic and brand names

    • Dose

    • Start and stop dates

    • What the pill/capsule/liquid looks like

    • A record of any side effects experienced

    • What the drug is treating

  2. Instructions

    • How and when to take the medication

    • What not to do when taking the medication

  3. Over the Counter medications and supplements with their doses

  4. Drug and other allergies

  5. Drugs to which you experienced a negative reaction (couldn’t tolerate it)

  6. Recently completed prescriptions

  7. Name/contact info of prescribers (physician/physician assistant/nurse practitioner, etc.)

  8. Name/contact info for pharmacy that filled the prescription(s)

Dispose of Unused Medications Safely

  • Option 1: Return unused medications in person

    • Some pharmacies, clinics or even hospitals may accept unused medications. You can check for a facility at Some (but not all) police departments or fire stations will accept unused medication on National Prescription Take Back Day, on October 27.

  • Option 2: Return unused medication by mail

    • Many pharmacies sell postage paid special envelopes for you to return unused medications to a safe disposal facility

  • Option 3: Look for a disposal kiosk

    • Many pharmacies have secure kiosks where you can safely deposit unused medications. Remove personal information, and drop unused medications in the slot!

  • Option 4: Neutralize them!

    • Purchase specialty charcoal activated medication disposal bags. After placing the medications in the bag, add water and seal. The drugs will be rendered inert and inactive - including opioids. These bags can then be placed safely in the trash and you can have peace of mind knowing that the drugs will not enter the water supply or be easily abused or diverted.

NOTE: Most medications should not be flushed, but there are a small number that should be. Check with the pharmacist to find out if medications should or should not be flushed. Be extremely cautious if you choose to place unused medications in the trash. Children, pets and those addicted to opioids can fish medications out of the trash, even if combined with coffee grounds or kitty litter. 

Doctor Visit Checklist

You may want to accompany your care recipient to doctor’s appointments. This way, you and your care recipient can work together as members of the health care team and ensure that you both understand the recommended medical course of action. This is an especially important role if your care recipient is cognitively impaired.

Here is a checklist to help you make the most of your doctor’s visit:

Doctor's Office Visit Checklist

Before the Visit

  • Write down all questions or any concerns you might have so you don’t forget them. This will help you state them clearly. Regardless of how insignificant you feel the doctor may think it is– ASK!

  • Identify current symptoms. Use the following handy symptom-reporting guide.

  • Update the patient file and medication list. Be sure to include all medications, over the counter drugs and supplements.

  • Call to confirm appointment

During the Visit

  • Bring the updated medication list

  • Clearly report all of your loved one’s symptoms; don’t try to diagnose the problem.

  • Ask your questions and record the answers

  • Record doctor's instructions

  • Discuss recommendations

  • Verify follow-up

After the Visit

  • Review your notes

  • Check prescriptions

  • Discuss the visit

  • Update your calendar

  • Call for test results


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