Taking Care of The Caregiver in Chronic Disease

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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. If you are a caretaker, focus on these 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. Listen to your feelings. If something feels good, do it. If not, give yourself permission to not do it!

2. Get a babysitter, 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, letting yourself become unhappy won't magically make another person happy — misery does not love company.

3. Get expert advice to manage pain.

Having the patient be pain free is good! It is also their right! 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. 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 make 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 the fear of dying. This creates a "conspiracy of silence" that can be very uncomfortable. It also makes it impossible for the patient 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. 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

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.

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. This occurs when the patient is comfortable and gets to have the people they love around them. For most people, this is much more important than being tormented by high-tech marvels in their final hours.

Keep these rules in mind, and your experience of being a caregiver can be a blessing, bringing you and your loved one into a closer, happier, and more loving place!