An Interview on How to Cope for Caregivers of Pain Patients
A conversation with Guadalupe Palos, R.N., L.M.S.W.
Q: What challenges do caregivers face?
A: The most common challenges facing caregivers are: (1) feeling guilty about taking time for themselves; (2) being hesitant to ask for help and not wanting to bother anyone; (3) accepting the fact that they will not be able to “fix the pain” forever; (4) realizing chronic pain is an experience that fluctuates from day to day; and, (5) honoring the patient as an independent person whose decisions may not always meet their expectations. And, of course, there are other complex challenges, such as financial worries and the long-term effects on their personal mental and physical health.
Q: What advice would you offer to those caring for people with chronic pain?
A: Be patient and supportive. Encourage the patient to become a self-advocate for their pain management. If they are involved in their care, it may help distract them from concentrating on their pain. Caregivers of people in pain face a unique danger — that is, it’s very easy to make the pain experience the center of the entire family’s world. For example, the atmosphere in a home often may be linked to whether the person in pain has a good or bad day. If it is a bad day, the caregiver’s reactions may range from being overly protective to silent anger. Whatever the reaction, it may affect other family members and even the person experiencing the pain. If the caregiver uses empathy and maintains a sense of calm, the family world is safe. But if the reaction is negative, it contributes to the chaos of the pain experience.
Q: Caring for a loved one can be overwhelming. How can caregivers take care of themselves so they are in a good place to help their loved one?
A: At the start of each day, remember that it is a new day. For their loved one, it may be a pain-free or pain-filled day. Either way, caregivers must take care of their own physical and mental health FIRST. If their health is in balance, then they are better equipped to help their loved one. Another tip is to think about positive or rewarding aspects of being a caregiver. Keep a list and review it when feelings of being overwhelmed arise.
Q: Caregivers often feel frustration and sadness as they watch their loved one suffer with uncontrolled pain. What is your advice to best cope with these feelings?
A: No one likes to watch someone suffer — least of all a loved one. But there are a few things to help cope with feelings of sadness or frustration. First, caregivers should realize that being able to just listen and offer empathy is enough. As I said before, one of the biggest challenges facing caregivers is the desire to fix the pain. Unfortunately, chronic pain does not have a simple fix, which contributes to feelings of frustration. Second, feeling sad is a normal reaction when we see someone suffer. Don’t hide the way you feel because you want to protect your loved one. Third, talk openly with them and share your feelings. Often caregivers are surprised to learn that the person in pain understands and relates to their frustration and sadness.
Q: Communication is so important to avoid misunderstandings. Do you have any tips for patients and their caregivers to better communicate about pain?
A: Talking, observing and listening are three critical components for communicating about pain. Direct verbal communication between the patient and caregiver contributes to better assessment and better pain management. Often, a patient may be reluctant to talk about his or her pain. When that situation occurs, it helps to observe the patient’s non-verbal behavior. For example, are they having chages in their mood, staying in bed, or not eating or sleeping? These may be signs of increased or poorly managed pain.One of the most important aspects of communication is simply to listen. There are times the caregiver may be thinking of other tasks that they must do or they may assume they know what the patient will say, so it’s hard to concentrate on what the patient is saying about their current pain experience. We must remember that chronic pain fluctuates on a daily basis so its severity will change as will the treatments used to reach pain relief.
Q: Where can caregivers get the help and support they need?
A: The stress and burden of caregiving is a growing public health concern. There are some simple things, including (a) doing something for yoruself every day, such as meditating, taking a walk, or talking to a close friend; (b) not isolating yourself because of your caregiver role: (c) accepting the help that people offer; (d) bringing humor into your life; and (e) finding your spiritual self.
Q: Is there a point at which caregiving can become too much to handle?
A: Most definitely, yes. Caregiving is extremely stressful. If caregivers notice that they are particularly sad, have feelings of worthlessness, or thoughts of wanting to harm themselves, let someone know immediately. Encourage the caregiver to tell a friend or family member. In particularly stressful situations, encourage them to contact their primary healthcare provider.
This article was originally published in APF’s Pain Community News