For Families & Caregivers

Thank you for being the caring person that you are. You might identify your self as a “caregiver” or you may view yourself as a committed friend or family member to someone (or many) who is (or are) suffering. You care enough to try to find out more about taking care of yourself so that you can help that person who you care for even better.

What you do really matters. The love and practical assistance that supports a person with pain makes a difference to how they either recover, cope effectively, or fall into a downward spiral of inactivity and suffering.

All of this is not to say that this support role is not a hard job! It is. A person in pain can be irritable, stubborn, and difficult at times, especially to those who are the closest to them. Try not to take those kinds of comments to heart. Patience and good communication skills are going to be called for again and again.

No one wants to feel pitied. Try to shift your feelings and words towards expressing empathy, if possible. It will be received more readily and will be more appreciated.

Pain is a subjective experience. If the person you are caring for is not able to communicate, you will have a very important role helping them to overcome this barrier to get the care they need. Use pain assessment tools, or if that is impossible, use your own observations of any changes in behaviour, outward signs of pain, such as moaning, grimacing, crying, and what seems to make the symptoms better or worse. If the person can say that they have pain and give some expression of how bad it is, that is always preferred over observations alone. There are some observational pain assessments available, but they are only to be used when the person with pain is unable to communicate at all.

We asked “Tracy’s” 16-year-old boyfriend, “Mike” what he does to help her. She still experiences a lot of pain and worry about her symptoms, and her illness isolates her from her friends. He answered that he tries to be patient and relaxed. He explained that he has learned that people in pain can react differently than you might expect, so being calm is helpful. They also enjoy playing or listening to music together. You’ll find these ideas echoed in the tips and advice we received from other people with pain.

Some people who have learned to cope well with pain said:

• Believe the person when they say they have pain.
• Try to listen and be present.
• Try to laugh or experience something positive together on a regular basis.
• Be prepared to be flexible to accommodate changes in the person’s ability to perform day-to-day activities, hold a job, etc.
• Recognize outward signs of pain, like grimacing or protective posturing, and that changes to a person’s mood could be pain-related.
• Ask what you can do to help, and sometimes let the person struggle a little bit if they haven’t asked for your help.
• Ask what support a person might want.
• Ask for clarification if the person declines to do an activity with you. Maybe there’s a way that their needs could be accommodated to encourage participation.
• If possible, learn about what causes the person pain, e.g. a car accident or a disease, and what strategies or techniques the person uses to manage pain.
• Find ways to help manage pain together, like encouraging breathing, practicing meditation or gentle stretching.
• Every person is different and unique in how he or she manages pain. Don’t compare them to others or try to make them feel bad. What works for one person might not work for another.
• If health professionals are not listening to the person you care for, encourage him or her to use the pain assessment tools to help with communication. It’s difficult to talk about pain and suffering without getting emotional.
• Think of tools or equipment that might be useful. When Bonnie kept asking her husband to carry things for her from place to place after surgery when her mobility was difficult, he found a backpack for her to use with her walker. He would also fill a water bottle for her to have within reach. It seemed like “tough love” at the time, but it was also clever problem-solving to help her keep some independence.
• When the person is angry or irritable, remember that some of this is due to pain and sleeplessness, and know that it will quickly pass. Try not to get upset and if you do, walk away.
• Avoid clichés like “things will get better” or “you just gotta pull yourself up by your own bootstraps”. Even though you want things to be better, consider the value of radical acceptance of the present.
• Get help or counselling if you are stressed or don’t know how to help or support a person with pain.
• When the person you care for has a flareup or is experiencing increased stress and pain, they can be vulnerable to going into a downward spiral. During that time, extra help and encouragement may keep it from being even worse. Listen to your own self. If it’s too much, you might need to take a break to recharge yourself.
• If you are a healthcare professional, keep learning more about this topic, realize that not all pain goes away, and that teaching someone how to manage symptoms and live life to their best abilities may be a way to help.

Focus on what you can do as a support person, not what you can’t, and set reasonable goals for yourself to achieve.
Celebrate small successes for both you and the person you are caring for!

Pain in Older Adults with Dementia

Managing pain in older adults with moderate to severe dementia can be particularly difficult because the person may not be able to say that they have pain. The individual with pain may be very distressed and sometimes will display disruptive behaviours that can distract caregivers from recognizing the underlying cause of their distress.

If the individual can confirm the experience of pain, then this is a self-reported pain assessment. If this is impossible or unreliable, then there is another way to reliably track pain using an observational assessment. Here is a link to PAINAD, a validated observational pain assessment and pain log for older adults with dementia.

If you are a caregiver of an older adult with dementia who has difficulty communicating, you can feel empowered by using your observational skills to advocate for them. Use the PAINAD assessment and pain log and share your results with your loved one’s healthcare providers. This is a highly effective way of monitoring for the presence of pain and taking appropriate action to minimize their suffering. A family member or caregiver is more likely than a healthcare provider to notice subtle changes or variations in daily behaviour that might suggest the presence of pain.

What else can be done besides use of pain medications? Here are some ideas that use the senses:

• Human touch
• Gentle movement
• Position changes
• Warmth
• Pleasant aromas
• Soothing sounds
• Engaging in meaningful activities

Remember that pain is a complex experience that is modified by multiple factors. Feeling safe is very important if we want to decrease pain. Imagine yourself living with memory loss and trying to make sense of what is going on around you. Think of what others around you might do to make you feel safe and cared for. This will help you to know how to decrease the experience of pain for your loved one.