When You’re the Caregiver of One Who’s Dying

By James E. Miller

     Someone you love is dying. Someone who has been as lively as you is now losing their liveliness, or they’re about to. It hardly seems possible. More than that, it hurts. It hurts to see them go through what they’re going through. It hurts that you cannot protect them, that you cannot change their outcome. It hurts to feel all that you feel. It hurts to realize this is not the only death you’ll ever face.
     Someone you love is dying and it feels as if a part of you is dying too. It’s not easy to think about what all this means. What will life be like without them? What will happen to you in the future? What will become of your relationship? Those are only some of your questions. You’re probably also wondering about this period just ahead of you. What will you say to that person? What will you talk about? What should you not talk about? How should you act? What can you do that will best help them? And how can you best help yourself?

This will be a time of testing unlike any you’ve known.

     It can be extremely stressful when someone you love is dying. Depending on who they are, who you are, and what the situation is, the stress can seem overwhelming. Not only are you about to lose an important relationship, but you’re probably being forced to make major changes in your life. Change does not come easy. Unwanted change is even harder to accept. And a change which threatens your sense of well-being is the most difficult of all. It would not be surprising, then, if this were one of the most stress-filled times you’ve ever known.
     In addition to dealing with all your emotions, you may be facing a host of disruptions in your daily life. You may be responsible for extensive caregiving duties, either ones you’ve chosen or ones you’ve been handed. Doctor appointments, lab tests, hospital visits, and medical emergencies may devour your time. Day-to-day caregiving rituals may consume your thoughts and sap your energy. Financial matters may burden you or even frighten you. Decisions about the future may hang heavy.
     Other responsibilities also vie for your attention. You may have a career to juggle, other loved ones to watch over, important commitments to fulfill. Your family life may be altered, if not fractured. You’ll probably have less leisure time, less personal privacy. Friends may pull back from you out of their discomfort of not knowing what to say or do.
     What is happening to the one you love may cause you pain. Their disease may make them uncomfortable. Their treatments may make them sick. Their dying may make them very sad. You may witness changes in them that are hard to accept, or you may experience changes in your relationship that concern you, or hurt you, or mystify you.
     It’s no wonder that caring for someone who’s dying is one of the most stress-producing jobs there is, even for people who are trained in this work. And if it so easily affects those with experience and expertise, why should it not affect you? You're new at this. And this is not just a patient you’re dealing with—it’s someone who has worked their way into your heart.
     Your situation should not be downplayed. But neither should it be painted as impossible. Others have done what you are now called upon to do—many others. And while you may wonder if you have what it takes to do what you must do, those who have done this before you have left a message: “It’s hard, but you can do it.”
Three suggestions may help you through this time.
     • Learn all you can. Find out about your loved one’s disease, prognosis, and treatment. Learn how to provide care, manage stress, and develop efficiency. Ask questions, read articles and books, network with others. The more you know about what you’re facing, the better you can face it.
     • Go easy on yourself. Give yourself time to adjust to all the changes. Pace yourself daily. Be lenient in your self-expectations. The more accepting you are of yourself, the more tolerant you’ll be of those around you, including the one who’s so ill.
     • Don’t forget: this is only temporary. It may seem that this crisis will never end, or that life will always be sad, or that you’ll be forever hurt by what’s happening. Such thoughts are understandable. But rest assured: the distress you feel will one day subside. Life’s joy can return. You’ll be shaped and changed by what you’re going through, yet the changes don’t have to be only negative. You can grow from this experience. You may not want to read that right now, but it’s true.
     If nothing else, remember this: You’ve known times of testing before, and you’ve survived them. You can yet again. For the moment draw upon the strength and the example of those who have persevered before you. Take their words to heart: “Yes, it’s hard, but you can do it. I know you can.”

     Jim Miller has written many more suggestions for being the caregiver of someone who’s dying in his book One You Love Is Dying: 12 Thoughts to Guide You on the Journey. More information about this and other resources is available here.

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