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.
This story is part of Military Families Week, an effort by HuffPost and AOL to put a spotlight on issues affecting America's families who serve. Find more at jobs.aol.com/militaryfamilies and aol.com.
Follow Lee Woodruff on Twitter: www.twitter.com/leemwoodruff
Richard W. Besdine, M.D.: The Stigma Around Aging And Chronic Pain
My wife has a brain disease which causes mini-strokes on a routine basis. Any day may be the big one that ends it all. Over the years, we have accepted this as just the way it is. Initially though, this almost ended our marriage. To my wife, I came across as uncaring and aloof. But in truth, I was scared to death and didn't know how to react or deal with her suffering. I absolutely adore my wife, and she is the best mother in the world to our children. Frankly, I don't know how she does it.
Unfortunately, empathy is a trait not all of us are born with. I didn't have the ability to place myself in her shoes, because I had never experienced the pain she was enduring. I tried to imagine it but just couldn't. I absolutely realize this came across to my wife as callousness on my part.
This all changed when I started having gall bladder attacks. After about a year, I had it removed. And it was absolutely a blessing in disguise. A switch flipped in my mind, and I finally could relate (somewhat) to what she was going through. Now I am more understanding and patient, and our marriage is the better for it. Confusion and fear on the part of the care giver can be the death blow to a relationship if not properly addressed.
Many of us don't remember to take care of ourselves and I would like to emphasize to all caregivers how important that truly is. Remember - if you are stressed or unwell you can't help your loved one. Stress can also make you feel overwhelmed and you won't make the best decisions for yourself and your loved one during that time. It's not selfish to take time for yourself when you need it - it's important to your physical and emotional well being and keeps you balanced! Even if it's just a couple minutes a day, little bits make a big difference. Many diseases have literature online, support groups to join or even centers specifically for caregivers and they can be a wealth of information and comfort.
No one, but the experiencee, can actually feel a particular pain. Indeed it is possible to “feel” pain, in a limb that no longer exists. And not “feel” pain, even when harm is being inflicted. Thus pain does not actually “exist”. But is being generated, in an alarm capacity, by the brain itself. Recent trials have demonstrated that techniques designed to distract, divert, and exert control over the mental faculties can have astonishing results. For example, a simple video game demanded so much computing power from the mind, that a player was rendered insensible to other incoming signals. Similarly, hypnosis induced some intellects to attenuate or even disconnect that activity. Such methods do not depend on the ingestion of chemicals, which might have unacceptable side effects. And in addition, are relatively inexpensive or free.
We were finally sent to see a neurologist in FL who specialized in lightning & electrocution victims. He administered cutting edge neurological tests that were able to trace the course of electricity, and to explain why my husbands pain was out of control. Then he delivered the sobering news. He told us my husband would never get better. He advised us that 95% of marriages will suffer, most ending in divorce, and that 50% of patients commit suicide. He suggested we move to a warm climate and changed his prescriptions. We took his advice, moved to Florida and began learning as much homeopathic, naturopathic, alternative healing therapies & nutraceuticals in an effort to thwart the damning prediction. Florida's lightning & hurricanes sent us to Hawaii five years ago. Last week we celebrated 37 years of marriage. It has not been without trials & tribulations, but with an abiding love & devotion through everything. I could write a book!
Everyone has a story, and many of us are solely responsible for taking care of a lot of others, while trying to get some time to take care of ourselves. My husband then got blood cancer, so I'm a caregiver again. Somehow, we become stronger than we think we are, but support from friends, other relatives and blogs where experiences can be shared, really help.
Drugs don't help at all. She has been to the Mayo clinic...has tried a pain pump, and is currently on Ketamine infusions. Her next step is an implant in her brain. Unfortunately health insurance will not cover this procedure.
I have a great deal of empathy for people with similar conditions. I have no empathy with the health insurance industry.
We enlisted home hospice for help. The nurse came weekly, then twice a week as Mom's condition warranted. Ditto CNA's for bathing and dressing. Pain management and maintaining Mom's quality of life was their highest priority.
Mom was to last two months in home hospice; she survived a full year (at 90, going to her beautician and Friday night Bingo weekly until last days at home, pain-free), but finally started "sundowning" (nocturnal attempts to get out of her in-home hospital bed, strange hand movements and vocalizations) and reported emerging pain, whereupon with her agreement she moved to a hospice residence.
Again, staff were extraordinarily kind and attentive, with a top priority on managing her pain and anxiety. They did this brilliantly; Mom was supposed to last "24-48" hours according to the last home hospice nurse. She survived over a week, quite cogent. My youngest sister and Mom's god-daughter flew in from NY and had quality time with her.
In the last two days, she remained mostly asleep, with the staff once again extraordinarily vigilant about pain and/or emotional distress, and managing same with sub-lingual or rectal administration of morphine and minor tranquilizers. She died peacefully in her sleep. WHY DO ONLY DYING PEOPLE GET PROPER PAIN MANAGEMENT?
You mentioned not being able to use opiates. Is this due to an intolerance, or the nausea that oral opiates can cause? My wife uses Fentanyl 50mcg transdermal patches to maintain a reasonable level of pain relief. She would be totally bed-ridden if not for this medication. She also gets severe nausea from the CFIDS (generally caused/accompanied by migraine). We use Phenergan injections to counter the nausea with very good results. There are very effective alternatives to oral pain medications available.
If this situation is new to some of you reading this, please know that your life will change. Take your treasures where and when you can. And once more - don't get angry with your partner, parent, child or whoever you're caring for. They didn't ask for the pain and are probably already feeling guilty about needing so much of your life. One day at a time...