Advice for Caregivers
When Caring for a Sick Loved One, Be Selfish!
The media puts a lot of attention on the treatment of illnesses, but very little on those who do a lot of the treating — the healthy spouses (and other family members, like adult children and siblings) who take care of their sick loved ones. In my practice, it's not uncommon for me to see caregiver-spouses who literally had to become sick themselves to avoid burning out.
Well, you don't have to get to the point where your body takes over to protect you from yourself. By following the four rules below, you can stay healthy and happy while taking loving care of your seriously ill loved one.
Rule # 1: Be Selfish — Take Care of Yourself First!
(If you don't, you'll burn out and won't be able to take care of the sick person.)
Notice that when a flight attendant gives her instructions, she makes it clear that you need to put your oxygen mask on first — before you help your child! There's a good reason for this. It works better! Otherwise, you'll pass out and neither of you will have oxygen.
It works the same way in day to day life.
We always think it's better to be self-sacrificing and to constantly give of ourselves, even when it feels bad to do so. In fact, we often feel guilty when we don't put others' needs ahead of our own.
It's time for you to let go of this way of thinking. If you are coming from a reasonably centered place — loving, positive, concerned — your feelings will take into account the needs of both the ill person and your own. And if you don't feel good when doing something, yet you still do it, it isn't always true that you're being a saint. Sometimes you've being a fool! Why? Because that can be the path of burnout and getting sick yourself, which only adds to the burden of the very person you're taking care of.
So listen to your feelings! If something feels good, do it. If not, it might very well be better not to do it! Remember, getting sick yourself doesn't somehow make the other person healthy! (On some level, good people actually believe this!) You do your loved ones no favors giving up your own life for them, which leads us to Rule #2…
Rule #2: Go Out and Have Fun
(Even if the person you're taking care of can't.)
If you don't have fun, the sick person will feel guilty and you'll feel resentful. Remember, becoming unhappy yourself won't make your loved one happy! So find someone who can pitch in for you for a few hours every week so that you can get out of the house and have some fun.
Maybe the person you're caring for can even come along, depending on how sick he or she is of course. Be creative. Maybe they can sit by the lake while you jog around it. Just be sure to maintain the activities that give you joy in your life!
Maybe you're saying to yourself, "Nobody else can take care of my partner like I can!" But you're wrong. Get in touch with a support group for people with the illness you're dealing with — folks who are familiar with the disease and know how to care for the people who have it. Get to know these folks and you could have access to a terrific source of occasional "babysitters."
In addition, remember that even though you're (probably) not a nurse, you're able to take care of the ill person. So why couldn't other non-nurses, like family members and friends, do the same?
Rule #3: It's Important to Keep the Ill Person Pain-Free
(It's also their right!)
It seems like some doctors embody the old expression, "All pain is tolerable, as long as it's somebody else's." Unfortunately, the only real pain management many doctors get in medical school is to give Tylenol, aspirin/Motrin or, if the person has cancer, narcotics. Often, a person's pain doesn't respond well to those three treatments. In these cases, increasing the dose won't help, yet it may cause a lot of side effects.
An extraordinary array of effective pain therapies is available. And they work best when they target the cause of the patient's discomfort, as opposed to only the symptoms — be it arthritis or migraines or carpal tunnel syndrome or cancer. The S.H.I.N.E. protocol is a good example of this — our study showed it to be especially helpful in fibromyalgia, muscle pain, and chronic fatigue, where study participants demonstrated over 50% reduced discomfort in just three months following the protocol.
Everyone has the right to be pain-free. If your physician can't provide complete pain relief, politely request a referral to a pain specialist (if needed, demand it!). I find that physiatrists — physicians trained in the specialty of "Physical Medicine and Rehabilitation (PM&R)" — often do the best job at long-term pain relief. There are two broad groups. The first comes from an anesthesia background and is especially good at procedures such as nerve blocks, or putting in pumps that feed medication directly to the brain. The second group is more likely to have had an internal medicine or general practice background, and is more likely to focus on treating the underlying cause of the pain. In most cases, I recommend people start with this latter group.
In my experience most people can become pain-free or at least quite comfortable. Reassuring the person you are caring for that they will be kept comfortable will eliminate a lot of their fear — fear that they might not be sharing with you.
Rule #4: Be Honest With Each Other About the Implications of the Illness
The debilitating nature of fibromyalgia — along with the caregiver's possible lack of understanding of the disease — can result in a very difficult situation. But each illness presents its own set of challenges.
For cancer and other chronic or terminal diseases, one of the most devastating consequences for the patient is the isolation that occurs because of their fear of death and dying. This can create a "conspiracy of silence" around the patient that is not only uncomfortable, but also makes it impossible for the patient to speak about important feelings they are having.
If a loved one is dying, even if they still have quite a while to live, give them the opportunity to speak about death by bringing it up yourself. If the person isn't ready to speak about it, they'll let you know, and you can let the issue rest. More often than not, they'll experience an incredible sense of relief, and there will be an outpouring of feelings about death and dying that they have wanted to share. They may also want to discuss spiritual beliefs as it relates to the afterlife.
It's also critical to talk about "end of life" care. Ask them if they want CPR when their body is ready to pass on and there is nothing more that can be done to benefit them. You might ask the person is they want to sign a "living will" stating that CPR should not be given once death is imminent and unavoidable.
Although life is precious, there comes a time when it's important to let go, and let a person die with grace. We should use medical technology wisely to prolong life when it's in the person's best interest — and not to torture the person by needlessly prolong their suffering and death.
My Best Advice
When caring for a sick loved one, check in with what feels best to you. Do it from a centered or prayerful place. In my experience, a good feeling is the psyche or soul's way of guiding us so we can be true to ourselves. Choose to do and keep your attention on what feels good. Trust that in this way, your experience of being a caregiver will be a blessing, bringing you and your loved one into a closer, happier and more loving place!
Jacob Teitelbaum, M.D. is one of the world's leading integrative medical authorities on fibromyalgia and chronic fatigue. He is the lead author of eight research studies on their effective treatments, and has published numerous health & wellness books, including the bestseller on fibromyalgia From Fatigued to Fantastic! and The Fatigue and Fibromyalgia Solution. Dr. Teitelbaum is one of the most frequently quoted fibromyalgia experts in the world and appears often as a guest on news and talk shows nationwide including Good Morning America, The Dr. Oz Show, Oprah & Friends, CNN, and Fox News Health.