People who care for cancer patients experience as much stress as patients themselves -- if not more. Feeling helpless to protect those you love is a great stressor. So is the lack of time to accomplish all the daily tasks that you need to do, whether it's juggling work, childcare, taking care of the house, the car, the pets and more. There are the spiritual and existential worries, many of which parallel those of the patient. Why is this happening to me? Am I responsible for this cancer? Here are some common issues people struggle with as they care for others with cancer.
You care for a loved one but maybe no one cares for you. The person with cancer goes through his/her stages of grief, everyone calls and wants to talk and sympathize. People express concern but there is really not much anyone can do for you. It is a very lonely feeling. While you try to help your loved one deal with her/his feelings of loss, medical care, transportation, medication, information and planning, your own future seems like a bridge to nowhere. You may feel extremely isolated. It may seem that there is no place to go with your feelings. Maybe you feel guilty as a physically healthy person experiencing the anger, the fear, sadness, even rage. All these feelings are normal. You need a support system so you can fill your role as a caregiver. Maybe you have time to see a therapist or clergy and that can help. Maybe talking to a chaplain would be helpful.
Caring for someone with cancer is an all-consuming task. It takes all your time and all your energy, including your emotional energy. Often, it becomes very difficult to care for yourself. You don't have time to go to doctor appointments for yourself, you don't eat well, you don't sleep well. It is very daunting to see someone you love break down physically and emotionally. Going through chemotherapy, dealing with the decline that comes with advancing disease, you try to help your loved one deal with pain and physical insults to their dignity. The person loses hair, becomes frequently nauseated, loses control of bowel and bladder. There is lots of cleaning up involved in being a caregiver. You are buried in insurance forms, hospital and doctor bills, and paper work. Your loved one will go through extreme mood swings. One day she will be happy, the next depressed, the next angry. You will be there so you will absorb all of it. You will administer medication, give injections, dress wounds. You will do things you never imagined you would need to or be able to. On top of that, the cancer medications will affect your loved one's moods. Besides being sick or stoned on the drugs, some (like the steroids) will induce irrational rage. You may never know from one moment to the next what to expect.
It's normal to experience at least some time -- or even a lot of time -- that you hate your role as a caregiver. You might even hate the person who's put you in that role. And then you feel guilty. How can you hate your beloved mother, husband, child? He/she didn’t choose cancer. And then you think to yourself, What kind of terrible person am I? You are not a terrible person. You are in terrible circumstances. You are reacting normally to those circumstances. Like the cancer patient, maybe you can find some spiritual outlets to give you at least temporary respite from the difficult realities of your current situation.
Sometimes all you can do as a caregiver is to watch and advocate. This can create tension because your inclination as a caregiver is to protect and insulate. For the patient, the inclination is to push back: “I’m going to be as normal as possible. I won’t let this cancer keep me down.” For caregivers, this attitude can be very jarring because it looks a lot like denial, or rash or risky. You want to tell the patient, “Take six months off, you need to take care of yourself. Isn’t it worth it?” And the patient says, “Why sit around just saying I’m sick?” It’s not easy. You need to do the best you can, and take the time you need to take care of yourself. You deserve it. And it’s in the best interest of the patient, too.
Some cancer patients are very clear –they want to live no matter what it takes, no matter what that means. Others are less so –they don't want to suffer but also don't want to lose the life they have. Some caregivers want patients to pursue treatment because that is the only chance for continued life and, possibly, a cure. So they feel like they have contributed to the patient's suffering when the therapy stops working, when they experience terrible pain, when they suffer mental anguish. And how do you tell someone to stop treatment and die? After a long course of treatment, perhaps the disease is advancing and none of the treatments are working. However, maybe the patient doesn't want to make the choice to go into hospice, and asks you to make the decision. How can you tell her/him it is time to give up hope? The patient's sense of control, of having a choice, might be all she had left; how can you take that away?
Caregivers participate in the most difficult choices imaginable. Do you treat pain even though it would shorten remaining life? When you elect to stop life-sustaining measures and there is no living will, do you have the energy to fight with a hospital committee over your decision? To spend hours in a conference room arguing with a group of doctors to let someone you love die? Even when your loved one is explicit about how she wants to die, executing her wishes can be difficult. If she asks to be relieved of suffering and you do that for her, you can arrange with her medical team at the hospice to treat her aggressively with dilaudid and sedatives. You may feel then and even now that you did what you thought was right, what both of you wanted. But at the same time, you may feel that you killed her. That feeling may haunt you. Of course you hate being a caregiver. Who wouldn't?
Everyone has advice. All of it is well meant. But your friends aren't making the decisions and they aren't living with the consequences. It takes determination to make your choices with all the noise and distraction. Doctors may not be helpful. They give too little information, or they give too much, with jargon and detail that is hard to understand and absorb. They will often contradict one another. Memorial Sloan Kettering said one thing, Lenox Hill another, Dana Farber was a tie-breaker. Oncologists will treat until told to stop, whether or not there is a likelihood of benefit. And family conflicts do not go away because a family member has a serious or terminal illness. The caretaker may have to do damage control resulting from “last licks” in petty feuds. Do your best to stay grounded. Again, seek out spiritual practices that may provide respite. Consider talking to a professional, to a chaplain or to clergy.
You may be asked what you will do after a spouse or loved one is gone. If you are caring for a spouse, you will likely hear about how bright a future you have and how great your life will be after your spouse is gone. If you are caring for a child, you may be told how grateful you should be that his or her suffering is over. If it's a parent, people may tell you that he or she lived a full life and the time has come. Try to keep in mind that many of these people are well-meaning and intend to make you feel better, even though what they say makes you feel worse. Be aware that you may never walk into a doctor's office again without your mind going back to some horrible scene or another.
Surviving the death of a loved one may be the most difficult task that a human being is called to do. It's normal to experience a mix of conflicting emotions. You're grateful to be relieved of the tasks of the caregiver – and you feel guilty over your release. You are grateful that the suffering of your loved one is finally over -- and you don't imagine how you'll be able to live without them. The death may call into question your relationship with God, or rupture that relationship, at least temporarily. If you are a religious person, you may find comfort in the Book of Psalms, where the psalmists rage against God at the suffering that humanity endures.