The Care-Giver Syndrome
When examining how the media presents illness, you’ll find that treatment often occupies center stage. Little or no attention is focused on the needs of those who assume responsibility for daily care of very ill patients. In my practice, however, it is not uncommon for me to see people who care for ill spouses become sick themselves from the emotional toll it takes.
It is possible to stay healthy and happy while taking loving care of somebody who is seriously ill. Focus on four basic rules:
1. Take care of yourself first.
If you do not take care of yourself, you’ll burn out, and there will be nobody to care for your sick loved one. We’re brought up to think we should always give and sacrifice of ourselves, even when it feels bad to do so. In fact, we often feel guilty if we don’t.
It is time to let go of this way of thinking. If you are coming from a reasonably centered place, your feelings will take into account the ill person’s needs as well as your own. If it does not feel good to give up something and you still do it, it is not called being a saint; it is called being a fool. This path leads to burnout and eventually causes you to become ill, which only adds to the burden of the person you’re caring care for.
Listen to your feelings. If something feels good, do it. If not, don’t. Give yourself permission to address your needs! This means not giving up your life—which leads us to rule number two.
2. Get a babysitter, go out, and have fun.
Go out and havefun—even if the person you’re taking care of can’t. If you don’t, they will end up feeling guilty and you will feel resentful. Remember, letting yourself become unhappy won’t magically make another person happy; misery does not love company. Seek outside help to arrange a break for a few hours each week, then get out of the house and do things that are fun. Depending on the severity of the condition, your loved one may be able to come with you for part of the activity. For example, they could sit by the lake while you jog around it. Be creative and be sure to maintain the activities that give you joy in your life!
One excellent approach that can help the situation is attending a support group for people with the illness you’re dealing with. This has several benefits. First, the people there are familiar with the disease and how to care for those with the illness. This lends itself to creating a “babysitting pool” to help give you some free time. In addition, you can make friends who have an understanding of what you’re going through—who won’t mind talking about the illness and problems associated with being a caregiver.
There’s one important caution, however. I often find there are two kinds of support groups. One is the “pity party,” where people get together to talk about how horrible their situation is. For many people this is quite necessary and may be their only source of venting and sympathy.
The other kind of support group is made up of people who come together to share information and make everyone’s lives better. Although my natural preference is towards this style, both groups serve different needs—plus they can provide a source of “babysitters” to help you get time for yourself. Be sure to find one that fits your own needs.
If you can’t find a support group or other source of “babysitters,” you still need to get out of the house and have a life. Odds are you’re not a nurse; nonetheless, you are able to take care of the ill person. This should show you that others who might care for your loved one don’t have to be nurses either. It is both appropriate and beneficial to call on friends and family members to pitch in. If family members say they don’t have the time, then you could ask them if they’re able to contribute financially to help hire occasional outside help. There’s always the threat that you will drop out of the picture, leaving them scrambling to supply care for the patient. If this means that the patient would be in a nursing home and the family member would have to pay for it (or have their inheritance depleted), you may find that even the most reluctant ones will be willing to give either time or money for the patient’s care. You might only need to ask, though some situations may require a more insistent tone to make other family members recognize and accept responsibility to share in the family burden.
3. Get expert advice to manage pain.
A pain-free patient is good; it is 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 in medical school, the only real pain management many doctors learn is to give Tylenol, aspirin, or narcotics. Many pains do not respond well to these three treatments. In these cases, increasing the dose often will not help, and may even lead to uncomfortable side effects.
There is an extraordinary array of different treatments available for pain, which work best when they are tailored to the cause of the patient’s discomfort. Unfortunately, this sometimes means taking an extended period of time to evaluate the patient. It is often hard to find a doctor willing and able to spend the time needed for proper pain management.
You and your family members have the right to be pain-free. If you cannot get complete relief from your current physician, politely request (and, if needed, demand) a referral to a pain specialist. I find that physiatrists often do the best job. Recognize, however, that your insurance company may not pay for time. This means that you may have to pay out-of-pocket for somebody to spend the time needed to determine the most effective way to get rid of the pain.
In my experience, eliminating the root cause of the pain or, at the very least, making the loved one comfortable is more often the norm than the exception. Letting your family member know that you will be sure they will be kept comfortable eliminates an incredible amount of fear (that they may not be sharing with you).
4. Be honest with each other about the implications of the illness, including death.
One of the most devastating parts of having a chronic or terminal illness is the isolation that occurs because of people’s fear of death and dying. This fear creates a “conspiracy of silence” around the patient that can be very uncomfortable. It also makes it impossible for them to speak about feelings that are very important to them.
If someone is dying—even if the disease progression may not take your loved-one’s life for quite a while—bring up the issue of death. If the person is not ready to speak about this, then you can let the issue rest.
More often than not, however, broaching the issue leads to an incredible sense of relief and an outpouring of feelings that have been bottled up for quite a while. Talk about any fears surrounding death and dying. Also, talk about your spiritual beliefs as they relate to an afterlife. My own personal belief, which developed from both my life experiences and having grown up in a seminary, is that there is no hell— only heaven. In thinking about it, the patient may be reassured by the following realization: What loving parent would judge their child and send them to eternal damnation? I very much doubt that God is a worse parent than we are.
For those who do not hold a spiritual belief, talking about how we continue to live through our children, grandchildren, and the things we have done and created can also be very comforting. Simply having the topic out in the open can be incredibly healing and helpful.
It is also critical to talk about “end-of-life” care. Doctors have sometimes been taught that death is the enemy and will literally torture people to make sure that the patient does not die “on their shift.” If things normally done to people in an intensive care unit were unwillingly done to somebody on the street, it would be a front-page headline all over the world, and seen as a hideous act. Yet, we simply view it as normal medical care.
There is a time for such aggressive measures—when used to prolong life. When used to prolong death, however, I believe it is simply unnecessary torture. When approaching the issue of death, ask the patient if they want CPR when the time comes that their body is ready to pass on, and there is nothing more that can be done to benefit them. This time will eventually come to us all, and can be approached as if it is off in the future.
It usually becomes clear when we are prolonging death versus prolonging life. The period where this is a “gray area” is usually fairly short, or even absent. You may ask if the person would like to sign a living will stating that CPR should not be given once death is imminent.
In cases that are clearly terminal, it is important to be aware of another option, as well. An order preventing CPR is only a first step. A time comes when it is important to let go, let the patient die gracefully, and not force the body to find a more painful way to make its transition. At this juncture, it is reasonable to ask the patient if they would like what is called “comfort measures only.” This means that everything will be done to keep the patient comfortable but nothing will be given (e.g. antibiotics and, if the patient wants, even IV fluids) to prolong the dying process. Coma, and the dehydration that comes with it, has for millennia allowed the body a graceful and comfortable way to make its exit. I strongly recommend that we use our heavy technology to prolong life—not to prolong death and suffering.
Through this conversation, the patient is empowered to make the final decision. Prepare these decisions in writing, or discuss it with the doctor and other family members, so that the patient’s wishes are respected if they slip into coma. Have the doctor confirm that they will respect these wishes, and have a prescription written for the rescue squad (or other doctors) in case your doctor is not on call at the time.
Coming to this conclusion together and giving the patient your permission to die when the time comes is a great gift you can bestow. Many times, patients have pleaded with me to talk to their families, to convince the families to let go and let them die in peace.
The dying process does not have to be a terrible thing. Indeed, it can be a very sweet time that helps to deepen your relationship and be a special part of the person’s life. This occurs when patients are comfortable and get to have the people they love around them. For most, this is much more important than being tormented by high-tech marvels in their final hours.
One final thing to remember about the dying process: We routinely see family members (especially those who deserve to be sainted for the loving care they have given) torment themselves when their loved one dies, struggling with irrational guilt about what more they could have done. If you find this happening, be gentle with yourself and simply allow yourself to let go of the guilt.
The best advice I can give you throughout this whole process is to find a centered place, then check in with what feels good to you. When something feels good, I find that it is my psyche/soul’s way of guiding me so I can be true to myself. Keep your attention centered on what feels good and only act based upon this—you’ll be amazed at what feels good in this setting! In this way, your loved one’s end-of-life experience can be a blessing, bringing you, together, into a closer, happier, and more loving place.
Jacob Teitelbaum, MD, is medical director of the Fibromyalgia and Fatigue Centers, nationally; author of several books including Real Cause, Real Cure (Rodele, 2011); and contributes to NS’ “Health Nuts” blog.