I've written before about the importance of caregivers -- the unsung heroes in our midst. No one asks to become a caregiver. When you're thrust into that role unexpectedly, it can be truly devastating, particularly when your loved one is experiencing chronic pain, a condition that affects a whopping 53 million Americans.
In 2006, my husband, Bob, was injured by an improvised explosive device while on assignment in Iraq. After he awoke from a five-week-long coma -- also known as the longest five weeks of my life -- he was in a tremendous amount of pain. His doctors in Baghdad had saved his life by removing 16 centimeters of his skull, so most of us can't even imagine how that must have felt. Doctors implanted a skull liner after four months, but during that time, Bob was in extreme pain. Even sneezing hurt him immensely. I can tell you from personal experience, there is nothing worse than seeing a loved one in pain.
During this same time, I was trying accept my new reality -- balancing my already busy life as a mother to four children (from twin five-year-olds to teenagers) with the new role of caregiver.
I remember when the magnitude of this responsibility hit me. After Bob was injured, he was flown from Iraq to Germany and then to Maryland, where he was being treated at the Bethesda Naval Hospital. A doctor there handed me a consent form for all of the various treatments Bob was about to undergo, and the form included a laundry list of the possible complications, including death. Wow, I thought to myself. This didn't cross my mind when I was taking my marriage vows so many years ago -- I'm completely and utterly responsible for this man's life.
The enormity of that responsibility can weigh on you, and I didn't have the knowledge I needed to help care for Bob; I had to find the information I needed without a guide. That's why I am such a big believer in Caregiver Cornerstones, an educational program created by the National Family Caregivers Association and Purdue Pharma. Caregiver Cornerstones provides information and resources for individuals caring for a loved one in pain. I truly believe that if I had a resource like this during Bob's recovery, it would have made a big difference. I'm happy to have the chance to help spread the word about this important initiative.
The four Caregiver Cornerstones are:
1. Learning about pain management
Take an active role in helping to manage your loved one's pain. I know that in my case, I learned as much as I could about traumatic brain injury so that I could make educated decisions about Bob's care. If you know as much information as possible about your loved one's condition, pain management and treatment options, you may feel more useful and worry less.
2. Caring for a person with pain
This includes making sure that your loved one receives proper pain assessment and ensuring your loved one is following the treatment plan laid out in conjunction with a health care provider.
3. Caring for yourself
I know all too well that being a family caregiver can be a demanding job. Some days, you may feel like you can do anything, and others, you may not be sure how you'll get through the day. To be an effective caregiver for someone else, you must first take care of yourself. Make sure to get enough rest, eat right, and exercise. I know that for me, I cut out coffee, soda, and alcohol to help myself feel better, and tried to do even one little thing for myself each day. It's also critical to allow others to provide a support system, and don't be afraid to ask for help.
4. Advocating for all people in pain
For me, advocating has meant establishing The Bob Woodruff Foundation (www.remind.org) and talking widely about caregiving for a loved one in chronic pain. For you, advocating may mean contacting your elected officials to lobby for federal funds. The Caregiver Cornerstones program offers guidance on raising awareness about the importance of access to appropriate and effective pain care.
Please visit the Caregiver Corner section at PartnersAgainstPain.com where you can download a helpful brochure and learn more.
If you are a caring for a loved one living with chronic pain, it's important to know that there is hope and there are resources available -- you are not alone. Remember to educate yourself about your loved one's condition, draw strength from family and friends, and take the time to care for yourself.
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