End Fatigue

Taking Care of the Caregiver in Chronic Disease

Although much attention has been given to the treatment of illnesses, the media has placed little attention on the needs of those who take care of very ill patients. In my practice, it is not uncommon for me to see people caring for their spouses become sick themselves from the emotional toll it takes. By following some of the directions below, 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 burnout and there'll be nobody to take care of 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 do something and you still do it, this is not called being a saint. It is called being a fool. It will lead to burnout, resulting in your getting sick and thus adding to the burden of the person that you're taking care of. Listen to your feelings. If something feels good do it. If not, give yourself permission to not do it! This means not giving up your life — which leads us to rule number 2.

2. Get a babysitter and go out and have fun.

Go out and have fun, even if the person you're taking care of can't. If you don't, they'll end up feeling guilty and you'll feel resentful. Remember, your letting yourself become unhappy won't magically make another person happy — misery does not love company. Get outside help to stand in for you for a good number of hours a week so you can get out of the house and do things that are fun. Depending on how sick the person is, they may be able to come out with you for part of the activity. Maybe 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 to go to 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 the only source of venting and sympathy that they have. The other kind of support group is one that's made up of people who are getting together to figure out how to make everybody's life better and to share information that is helpful. Although my natural preference is towards this one, both groups serve different people's needs — plus they can provide a source of "babysitters" to help you get time for yourself. Be sure that you go to the one that fits your 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 that you aren't 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 to scramble 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 just need to ask, though in some situations you might need a more instant tone to make it clear that other family members must accept responsibility to share in the family burden.

3. Get expert advice to manage pain.

Having the patient be pain free 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 which case increasing the dose will often 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 have the right to have yourself and your family members be pain free. If you cannot get complete relief from your current physician, politely request (and then 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 figure out how to best get rid of your or your family member's pain. Most chronic pain is myofascial or neuropathic. My books From Fatigued to Fantastic and Pain Free 1-2-3 can give you more information on effective treatment approaches for pain. It is very unusual, in my experience, to not be able to either eliminate the cause of the pain or at the very least keep the patient quite comfortable with treatment. Letting your family member know that you will be sure they will be kept comfortable will eliminate 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 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 they have a terminal disease that may not kill them for quite a while, bring up the issue of death. If the person is not ready to speak about this, they will let you know and then you can let the issue rest. More often than not, what they will experience is an incredible sense of relief and an outpouring of feelings that they have wanted to share 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 live on in our children, grandchildren, and the things we have done and created can also be very comforting. Simply having the topic be 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 to unwillingly be 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 they are used to prolonged life. When they are used to prolonged death, however, I believe it is simply unnecessary torture. When you approach 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 come to us all, and can be approached as if it will be off in the future. It usually becomes clear when we are prolonging death vs. prolonging life. The period where this is a "gray area" is usually fairly short or absent in most cases. You may ask if the person would like to sign a living will stating that CPR should not be given once death is imminent and unavoidable. In cases that are clearly terminal, it is important to be aware of another option as well. In many cases it is not enough to simply not do CPR. There is a time when it is important to let go and let the patient die gracefully, and not force the body to find a more painful way to make its transition. When this time comes, 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.

By having this conversation, the patient will be able to make their own decision. I would get it in writing or have the patient let their doctor and other family members know their wishes as well, 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 them put it on a prescription for the rescue squad or other doctors in case they are not on call at the time. If the patient knows that they have your permission to die when the time comes, this will be a great gift for them. Many times patients have pleaded with me to talk to their families so the families would 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 they are comfortable and get to have the people they love around them. For most people, this is much more important to them than being tormented by high-tech marvels in their final hours.

It is also important to remember one final thing 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 the person dies with irrational guilt about what more they could have done. If you find this happening to yourself, 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, from a centered place, 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. Only do and keep your attention on what feels good — you'll be amazed at what feels good in this setting! In this way, your experience of being a caregiver can be a blessing, bringing you and your loved one into a closer, happier and more loving place!