Ideas for a Time When Someone You Love Is 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?
I've written this to assist you in finding the answers you seek. I've made a few assumptions along the way. I've assumed you're close to the one who's dying--they're your spouse or lover, your parent or sibling or child, your close friend or trusted colleague. If your relationship is more distant, some of the specific ideas presented here may not ring true for you. I believe the basic twelve principles, however, are universal.
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."
The dying person will be as they've always been, only more so.
When someone is told they have only limited time to live, they respond in their own unique way. Some people become visibly upset and others appear stoic. Some act astonished and others take it in stride, as if they've known all along. There are no prescriptions for how people will react when they learn they're dying, but there are some general rules.
As a rule, the kind of person they've been before is the kind of person they'll be now.
The fact that something has happened and someone is now dying does not change who they are. They do not automatically become wiser or kinder or braver. They simply become more themselves. Generally, if they were serious before, they'll be serious now. If they've been lighthearted, they'll probably still have a sparkle about them, at least some of the time. Quiet people will usually not talk a lot more, grouchy people will not complain much less, and affectionate people will not give up their loving ways.
What dying people may do is emphasize certain aspects of who they've been all along. Realizing this is a time unlike any other, and knowing it will not come again, they may concentrate on certain pursuits or call upon certain characteristics, letting others fall away. You may have the impression they're becoming more who they're meant to be.
As a rule, dying people prefer to live fully as long as they're able and to be treated as very much alive.
There's a tendency to treat dying people differently. Voices are often lowered. People's faces may appear overly somber or they may take on a false cheeriness. Topics of conversation become more limited and some things are no longer talked about at all. As a result, the dying person may feel they're being pushed to one side, or they're being treated with pity, or they're being handled like a child.
Not only is the dying person no different than they used to be, but in the most essential way, they are no different than you are today. They're your equal in every sense. They're as full of life as you are. They're every bit as human and maybe even more human. So they may bristle if you treat them as less than they are. They don't want your pity; they want your compassion. They don't want you to pat them on the head; they want you to go with them hand-in-hand just as far as you can.
As a rule, rules don't always hold.
While most people don't experience personality conversions as they prepare to die, some do. Some decide to live the time that's left in radically different ways, and they give up old lifestyles for new ones. Some become obviously freer and others become clearly happier. Some grow up a great deal in a short period of time and a few, unlikely as it may seem, actually blossom. It happens.
It will help everyone if you can go into this experience with as few preconceptions as possible about what dying people are like. Just expect the one you love to live as fully as they want for as long as they're able. Expect them to know joy as well as sorrow, to feel promise as well as pain, to laugh as well as cry. Expect them to teach you what you need to know. Mostly, just expect them to live until they die. Then let them do precisely that.
The one who's dying needs you to reach out.
Those who know they're dying may hesitate to voice their deeper thoughts and feelings. They're often afraid of upsetting people around them. They're not sure how much others are ready for. It's not unusual for caregivers to behave similarly, tiptoeing carefully through conversations, steering clear of any topics that might seem disturbing. This can also be a way of protecting oneself. Whatever the reason, the result is the same: the dying person can come to feel isolated and lonely. So can you. But that doesn't have to be the case. You can reach out and connect.
Connect by talking. Speak to the one you care for as an equal, person to person, face to face. Say what you think. Express what you feel. If the dying person is slow to open up, don't push them. Just let them know you're ready to move to a deeper level whenever they are. If tears come, let them to be. They're a sign that you care, an indication you wish this wasn't happening. Would you want the one you're with to think otherwise? So be honest with them. Talk simply and straightforwardly. Avoid secrets. Speak when the time is right and stop when the moment has passed. Draw the other person out bit by bit. Allow yourself to be drawn out too. Make this a time when you truly meet.
Connect by listening. The one who's dying may have much to say--feelings to explore, questions to ask, ideas to leave behind, experiences to sum up. Your patient, attentive ear is one of the greatest gifts you can offer. Real listening takes work. The dying person's thoughts can be complicated and confusing as they spill out. Their emotions can be forceful and yet elusive. Answers may not be easy to come by. Yet you will perform a wonderful service by listening carefully to what the other person has to say, without interrupting, without judging, and without shying away. These can be sacred times you'll both remember long afterwards.
Connect by encouraging memories. Often a dying person wants to make sense of the time they've had on earth. They want to feel their life has mattered and their influence will not be forgotten. You can play a critical role by treating their memories as important and their reflections on life as valuable. Leaf through scrapbooks and old letters with them. Look at pictures, sort through mementos, tell and re-tell meaningful stories. As you do this, you're each beginning to say your goodbyes. Saying them this way, gradually and lovingly, can help you both.
Connect by touching. People who are dying want to know you're with them in as many ways as possible. No way is more direct than physical touch. If it's a comfort to them, hold their hand or touch their arm or shoulder or head. Stroke them, massage them, hug them. Your nonverbal communication can say as much as your verbal, or even more. Don't forget that touch and hearing are the two senses a person retains longest. Even when they cannot speak, they can be spoken to with a sound or a caress.
Connect by just being present. Sometimes the most thoughtful way to reach out to a dying person is by not saying or doing anything. By your consistent return you communicate "I will not desert you." By sitting or working quietly in the same room with them, you communicate "I enjoy being with you." By staying beside them when they need you, your message is clear: "I am right here. I care."
The one who is dying wants to know they're not alone. It's up to you to tell them in as many ways as you can.
Jim Miller http://www.willowgreen.com