Dealing with Pain: How to Help Your Loved One
Radiation had driven Charlotte’s mother’s cancer into remission for about seven months, but Charlotte happened to be visiting when the cancer-and the pain- came back.
“I sat with her at the doctor’s, saw the X-rays,” Charlotte says. “It gave me a quick dose of reality, I can tell you. She had become hunched over as her bones deteriorated. She didn’t complain, but one afternoon, when she was walking down the hall toward her room, she whispered to herself, ‘Oh, I wish I could hold my head up!’ She didn’t know I’d heard her. I was stunned; I ached for her. My proud mother, the hyperactive adult who loved to swim and dance.”
As Charlotte returned for visits home over the coming weeks, her mother’s condition worsened. And she grew weaker. “She was terrified that something would happen in her neck and she’d be paralyzed,” says Charlotte. “She almost never complained about the pain, but it had to be bad enough to turn her skin gray before she’d agree to take a painkiller. She said she was afraid of getting addicted, for heaven’s sake. I think it was that she didn’t like feeling drowsy.” Radiation for her neck made her lose her voice and her sense of taste; it also caused miserable mouth infections and cold sores. “I wish now we’d had someone there who could have helped manage her pain better.”
Adapted from Caring for Your Parents
Ask anyone and they will say-that pain is one of their greatest fears. Despite this admission, pain remains one of the least understood issues in end-of-life care. As a result, many needlessly experience tremendous suffering.
It doesn’t have to be that way. This article will help you get the jump on pain.
Why Address Pain? Because we can. Why let something so negative pervade every aspect of your life? In addition to the physical ramifications of being in pain, other damages include:
- Disturbed sleep
- Impaired work ability
- Negative emotions including isolation, depression, and worry
- Inability to enjoy life’s simple pleasures
People in pain should know that human ingenuity has spawned a host of effective medications to control it.
What Inhibits Proper Pain Management? Consider a few myths and misconceptions regarding pain management:
- Fear of addiction Many fret that taking opium-like drugs such as morphine will cause them to become addicted. Research has shown little risk of addiction when a doctor administers medicines properly. Instead of looking at these drugs as producing “mental fogs,” individuals in pain should perceive these medications as giving them back their lives so that they can enjoy their final days with their loved ones.
- Taking morphine means the end is near. The level of medication should depend on the level of pain, plain and simple. And only the patient knows how bad it hurts. Logically, doctors start with mild medication and resort to stronger substances such as morphine when appropriate. The appearance of morphine merely indicates that the person’s pain level requires additional help. It does not shorten a person’s life.
- Pain is part of life. Many consider pain part of the illness that they must live with it. In particular, studies show that women are perceived to be more tolerant of pain and therefore, are less likely to report any discomfort. This prevents many from receiving proper pain management and results in needless suffering.
How Do I Get Help? Tell your doctor:
- Where it hurts
- When the pain started
- What you’ve been doing or taking for it
- If its constant or occasional
- If anything makes the pain go away, or makes it worse
- How it affects your quality of your life
How Do I Evaluate My Own Pain? Rate your pain for your doctor, zero to 10, with ten the worst. It’s a simple start toward treatment. Promising resources include ZAP (Zero Acceptance of Pain), a tool that has been developed as part of a cancer pain assessment program by the Association of Cancer Online Resources. Another, the American Pain Foundation, offers the Pain Action Guide and has set up a pain information center. If your pain levels, once identified, do not subside with medication, you might consider a pain specialist or clinic in your area.
What Should You Know? Fighting pain tops the agenda of every good doctor and medical professional. In 2001, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) introduced new standards that require all health care facilities to assess and manage pain effectively. Many institutions now include pain as the fifth vital sign in their patient protocols.
Beat the Pain
- Don’t wait until chronic pain is too severe to treat. Like most health issues, it’s easier to prevent than treat.
- Talk with your physician about good pain care. Be assertive, and tell your doctor you will not tolerate under-treated pain.
- Demand comfort care in your advance directive. Be clear and specific.
- Ask a family member or friend to be your advocate, if you cannot speak for yourself.
- Keep a record. Note location, time of day, severity, and what relieved the pain.
- Identify your pain level for home-care and hospice nurses at each visit.
- Understand your doctor’s orders for your pain medication. Know the frequency, dose, and type. Don’t be shy to ask questions.
- Insist that you have enough pain medication for weekends or holidays.
- Get the names and phone numbers of doctors covering for your physician.
- Ask to speak to the medical director or nursing supervisor. This may become necessary when you’re hospitalized and nurses fail to address your pain.
- Expect medication amounts to increase rapidly near the end of life.
Some of this material appears in slightly different form in Caring For Your Parents: The Complete AARP Guide.
© 2003, 2004, 2007 AARP. Reprinting by permission only.