Many friends, partners and other caregivers of people with facial pain describe themselves as feeling helpless. To help your loved one to cope with facial pain, it is important to understand that you will not be able to take the pain away, but there are ways you can help- your loved one and yourself- to deal with facial pain.
It is helpful to educate yourself about your loved one’s condition and its treatment because facial pain makes it difficult for patients to advocate for themselves. Viewing webinars, reading articles, and participating in other educational opportunities are all ways to become a better supporter of your loved one. Pass information on to your loved one, but don’t insist he or she takes a specific action on this information. Consider joining a Caregivers group to meet and learn from your peers.
There are also practical ways you can help your loved one manage his or her care. Offer to make doctor appointments. Go with your loved one to doctor visits if possible and take notes- it can be difficult to remember accurately what is said during appointments. Think of ways to make basic living simpler; for example, purchase an inexpensive medicine organizer, offer to pick up medication at the pharmacy, or handle phone calls when pain makes it difficult for your loved one to talk. Help your loved find things that ease the pain- a soft scarf, a soothing play list, a meditation podcast. Try not to get frustrated if these items don’t become useful, everyday tools. Encourage your loved one to become involved with something that they care about or that is a pleasant distraction such as a hobby. Volunteering makes people feel useful, needed and welcome. Joining a religious, spiritual or similar group can be a shared, positive experience between caregiver and patient.
Take Care of You
One of the most challenging aspects of caregiving is managing the stress and frustration many caregivers experience. Chronic pain, as well as the medications prescribed for it, can cause changes in mood and cognitive abilities. This may be difficult for caregivers, and can make calm communication between caregiver and person with facial pain challenging. After a bout of frustration, it is natural to then be left feeling guilty. The best you can do as a caregiver is to help when and how you can, and to be understanding (towards both your loved one and yourself) when you cannot. Taking care of your own physical and mental health is important to relieve stress and avoid burnout.
We offer the following suggestions to help caregivers take care of themselves:
- Take care of your own physical and mental health needs. You’ve probably heard this before: You can’t take care of someone else if you don’t take care of yourself. Be aware of your stress levels, take breaks, exercise, and talk to a friend. Only you know what works best for you.
- Ask for help! We all have our limitations, be aware of your strengths and abilities. When people offer to help, accept the offer – caregiving is definitely more than a one-person job.
- Be flexible. You will encounter situations where you may have to re-evaluate your needs and priorities. Things you did in the past may have to be looked at in new ways and new strategies developed to help you accomplish your tasks and manage your new responsibilities.
- Respite: Take some time off from your responsibilities as a caregiver. Plan time off and make any necessary arrangements in advance for someone to take over your caregiving responsibilities during your time away.
- Don’t isolate yourself. Connect with other caregivers who understand your frustrations and know about people with facial pain go through. Join the FPA Caregivers Support Group and Facebook Group. Call an FPA Peer Mentor.