Caregiver Cornerstones

Watch Video

---

Click here to hear from family caregiver Lee Woodruff and Suzanne Mintz of the National Family Caregivers Association

Caregiver Cornerstones Brochure

Pain hurts physically, emotionally, and interferes with everyday life. It affects an estimated 76 million Americans – that is more than diabetes, heart disease and cancer combined. 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 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:

1. Learning about pain management
2. Caring for a person with pain
3. Caring for yourself
4. Advocating for all people with pain

People who suffer from pain have a right to have their pain properly assessed and treated. Research shows patients and family caregivers benefit from learning about pain management. In fact, caregivers who have learned about pain management report feeling useful and those patients have more strength, increased appetite, less worry, and greater sense of control.

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 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.

It is difficult to watch a loved one suffer from pain. As you care for your 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:
1. Facial expressions, such as grimacing
2. Breathing and sighing heavily
3. Unusual body movements, such as limping
4. Behavioral changes, such as not wanting to eat or sleep
5. Emotional changes, such as crying or irritability
• Attend visits to the healthcare provider with your loved one.
1. Prepare questions in advance and take notes.
2. Keep a pain diary to use as a starting point for a discussion with the healthcare provider. For pain dairies and other assessment guides visit http://www.partnersagainstpain.com/professional-tools/pain-diaries.aspx?id=3. Make sure you get answers to all your questions.
3. Learn how to better communicate with your loved one’s healthcare provider. Visit http://www.nfcacares.org/caregiving_resources 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:
1. Your name and your relationship to your loved one
2. Your loved one's birth date
3. Insurance policy number
4. Name and address of the organization that sent the bill
5. Total amount of the bill
6. Diagnosis code on the bill
7. Insurance company's explanation of benefits
8. Visit http://www.thefamilycaregiver.org/pdfs/DrCaregvr.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 medications. There are many responsibilities that come with using medication to treat pain. Some things you should think about are:
1. 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 bring this record with you to every doctor’s visit or trip to the ER.
2. Tell the healthcare provider about all over-the-counter medications or herbal supplements your loved one is taking.
3. If pain disrupts your loved one’s sleep, speak to their healthcare provider about treatment options.
4. Lock up medications to avoid theft. Keep all medications out of the reach of children.
5. Talk to a pharmacist about appropriate disposal after medications are no longer needed.

• 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. To find online support visit http://www.thefamilycaregiver.org/connecting_caregivers/.
• 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. To create your caregiver calendar visit www.nfca.lotsahelpinghands.com.
• 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 be more independent.

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 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 http://www.partnersagainstpain.com/professional-advocacy/professional-advocacy.aspx?id=5 or www.InthefaceofPain.com.

For more information about caregiving and pain management, please visit www.partnersagainstpain.com or the National Family Caregivers Association’s Web site at www.thefamilycaregiver.org.