Featured Stories | Caregiver Cornerstones

A Resource for Family Caregivers Caring for People Living With Pain

Pain hurts physically and emotionally, and interferes with everyday life. According to the IOM, over 100 million adults in the United States suffer from common chronic pain conditions.¹ Pain is a serious and costly public health issue, and one of the top reasons people seek medical care. Pain may be different for each person—even those who appear to have the same injuries or illnesses. There are many challenges for people who care for individuals suffering from chronic pain.

For this reason, the Caregiver Cornerstones program was created to help you—the family caregiver—find the information, encouragement, and tools you need to care for your loved one with pain.

The Four Caregiver Cornerstones Are:

• Learning about pain management
• Caring for a person with pain
• Caring for yourself
• Advocating for all people with pain

People who suffer from chronic pain have a right to have their pain properly assessed and treated. Taking an active role in helping to manage a loved one’s pain may help you feel more useful and worry less.

1. What Is Pain Management?

Pain management is a quickly growing medical specialty that combines integrative therapies with traditional medical care. Ideally, this allows patients to have the best of both worlds. This type of care is typically customized for each person and should be created by the patient/healthcare provider treatment team. Following are some examples of this approach:

• Acupuncture: Developed in China, it has been practiced for thousands of years. The most commonly used and most scientifically studied acupuncture technique stimulates points on the body using thin, solid, metallic needles that are manipulated by hand or electrical stimulation.
• Massage: Used in numerous cultures. Usually, a therapist will press, rub, and otherwise manipulate the muscles and other soft tissues of the body with their hands, fingers and/or forearms to enhance function and promote relaxation.
• Physical therapy: Techniques include movement, exercises, water therapy, ultrasound, heat, and ice to help improve function, increase flexibility and strength, and decrease pain.
• Tai Chi: This ancient Chinese discipline is sometimes thought of as a combination of yoga and meditation. Tai Chi is rooted in self-control, and is a series of slow and soft movements. These exercises are thought to be calming and relaxing, providing both physical and emotional benefits.
• Medications: Often an important part of managing illness and relieving pain. Two common categories of medicines include:
  • Over-the-counter medications: These are medications that you do not need a prescription from a healthcare provider to purchase. Follow the directions on the label and be sure to tell your loved one’s healthcare provider about them.
  • Prescription medications: These medications require a prescription from a healthcare provider and must be purchased from a pharmacy. When using these medications, follow the directions on the label and call your healthcare provider with any questions. It is helpful to discuss all medications taken with the pharmacist.
• Social support: Identified as a significant way to help reduce pain. An individual’s support system includes friends, family members, and caregivers, including professionals.

2. Caring for a Person With Pain

It is difficult to watch a loved one suffer from pain. As you care for a person in pain, here are some important things to keep in mind:

• Believe your loved one’s report of pain.
• Pay attention to the signs that indicate your loved one might be in pain. These may include:
  • Facial expressions, such as grimacing
  • Breathing and sighing heavily
  • Unusual body movements, such as limping
  • Behavioral changes, such as not wanting to eat or sleep
  • Emotional changes, such as crying or irritability
• Attend visits to the healthcare provider with your loved one.
  • Prepare questions in advance and take notes.
  • Keep a pain diary to use as a starting point for a discussion with the healthcare provider. For pain diaries and other assessment guides, visit http://www.partnersagainstpain.com/tracking-pain/management.aspx. Make sure you get answers to all your questions.
  • Learn how to better communicate with your loved one’s healthcare provider. Visit http://www.thefamilycaregiver.org/pdfs/DrCaregvr.pdf for information, guides, and checklists.
• Talk to the insurance company. You will likely need to communicate with your loved one’s insurance company to assist with claims. Before you pick up the phone to speak to a claims representative, it is necessary to gather some information:
  • Your name and relationship to your loved one
  • Your loved one’s birth date
  • Insurance policy number
  • Name and address of the organization that sent the bill
  • Total amount of the bill
  • Diagnosis code on the bill
  • Insurance company’s explanation of benefits
  • Visit http://www.thefamilycaregiver.org/pdfs/insurancetalk.pdf for tips and guides to communicating with your loved one’s insurance company.
• Remind and encourage your loved one to follow their treatment plan, such as doing their exercises or taking their pain medication.
• Take responsibility for all pain medications. There are many responsibilities that come with using medication to treat pain. Some things you should think about are:
  • Keep a record of all medications being taken (prescription and over-the-counter medications). For a free medication tracking card, visit http://www.thefamilycaregiver.org/pdfs/MedicationRecord.pdf. Be sure to take this record with you to every doctor’s visit or trip to the emergency room.
  • Tell the healthcare provider about all over-the-counter medications or herbal supplements your loved one is taking.
  • If pain disrupts your loved one’s sleep, speak to their healthcare provider about treatment options.
  • Lock up medications to avoid theft. Keep all medications out of the reach of children.
  • Talk to a pharmacist about appropriate disposal after medications are no longer needed.

3. Caring for Yourself

• Seek support from other family caregivers. There is great strength in knowing you are not alone. You are one of about 50 million family caregivers nationwide. Connecting with other caregivers can bring hope and provide advice as well as emotional and spiritual support. Join Pain Advocacy
• Value yourself. You have a very demanding job, and you deserve some quality time, just for you.
• When people offer to help, accept the offer and suggest specific things they can do to help you.
• Create a free, private, Web-based caregiver calendar to organize family, friends, neighbors, and people at work. Help can include providing food, taking your loved one to the doctor, or giving you some time off.
• Watch out for signs of depression in yourself and don’t wait to get professional help if you need it.
• There is a difference between caring and doing. Be open to technologies and ideas that help your loved one become more independent.

4. Advocating for All People With Pain

It is our responsibility as pain advocates, caregivers, and healthcare providers to raise awareness about the importance of access to appropriate and effective pain care. This includes treating the whole person with an individualized treatment plan. Healthcare providers should understand some of the most common integrative therapies so they can provide patients with pain management treatment options.

Ways that you can raise awareness of pain management issues and become a more effective advocate include:

• Become educated on issues surrounding appropriate treatment of pain.
• Know the rights of people with pain.
• Let people know about issues related to pain management in your community.
• Build a group of pain activists that will help you increase your voice and spread the word.
• Create activities to reach people in your community, journalists, and elected officials.

For more information about becoming an advocate in your community, please visit Partners Against Pain or In The Face of Pain^®.