Helping Yourself Live When You Are Dying
You have learned that you are dying. Terminal illness presents human beings with an exceedingly difficult and contradictory challenge: you are dying, you know you are dying, yet it is your nature to want to live. MORE
Helping a Friend Who Is Dying
Your friend is dying. This is an extremely difficult time not only for you, but for your friend and all who care about him. This article will guide you in ways to help your friend-and yourself-during the last days of his life. MORE
Helping Your Family When a Member is Dying
You have learned that someone in your family is dying. You want to help the ill person as well as your family. This article will guide you in ways to turn your cares and concerns into positive actions. MORE
Helping a Child Who Is Dying
A child you care about is dying. You want to offer your love and care, but you are not sure how to go about it. Whether you are a parent, friend or caregiver, this article will guide you in ways to turn your cares and concerns into actions. MORE
Helping Your Family Decide if Organ and Tissue Donation is Right for You
If you are in the position of deciding whether or not to donate the organs and tissues of someone you love, you may have many questions. MORE
Helping Yourself Live When You Are Dying
By Alan D. Wolfelt, Ph.D.
You have learned that you are dying. Terminal illness presents human beings with an exceedingly difficult and contradictory challenge: you are dying, you know you are dying, yet it is your nature to want to live. The thoughts in this article are intended to help you deal with this tension and to continue to live even though you are dying.
Acknowledging You Are Dying
Acknowledging you are dying is the first step to living the rest of your life. If the onset of your illness was sudden or unexpected, you will likely feel shock and numbness at first. This is a natural and necessary response to painful news.
You can only cope with this new reality in doses. You will first come to understand it in your head, and only over time will you come to understand it with your heart.
To acknowledge you are dying is to let go of the future. It is to live only in the present. There is no easy way to do this, and you will probably struggle with this task every day until you die. Know that if you work at acknowledging the reality of your coming death, however, instead of denying it, you will open your heart and mind to the possibility of a new, rich way of living.
Questioning the Meaning of Life
Discovering that you are dying naturally makes you take inventory of your life. You have a right to have questions, fears and hopes. Illness establishes new directions and often causes some questioning of old directions. New thoughts, feelings and action patterns will emerge. The unknown invites you to question and search for the meaning of your life, in the past, present and future.
Accept Your Response to the Illness
Each person responds to news of terminal illness in his or her unique way. You, too, will have your own response, be it fear, excitement, anger, loss, grief, denial, hope or any combination of emotions. Becoming aware of how you respond right now is to discover how you will live with your terminal illness. Don't let others prescribe how you feel; find people who encourage you to teach them how you feel. After all, there is no right or wrong way for you to think and feel.
Respect Your Own Need for Talk, for Silence
You may find that you don't want to talk about your illness at all. Or you may find that you want to talk about it with some people, but not with others. In general, open and honest communication is a good idea. When you make your thoughts and feelings known, you are more likely to receive the kind of care and companionship you feel will be most helpful to you.
But if you don't want to talk about your illness, don't force yourself. Perhaps you will be able to open up more later on, after you have lived with the reality of your illness for a time.
Telling Your Family and Friends You Are Dying
Your family and closest friends deserve to know that you are dying. Tell them when you feel able to. If you simply cannot bring yourself to tell them, find a compassionate person with whom you can entrust this important task.
Be aware that everyone will react differently to your news, just as each terminally ill person reacts differently to his or her own illness. Many will be shocked. Many will cry. Some will refuse to believe it. Some will spring into helpful action by running errands for you, offering to clean your house, etc.
Many will not know how to respond. Because they don't know what to say or do, or because your illness may arouse their own fears of mortality, they may even avoid you altogether. Know that their apparent abandonment does not mean they don't love you.
Even children deserve to be told. As with all people, children can cope with what they know. They cannot cope with what they don't know. Be honest with them as you explain the situation in language they will understand. Don't overexplain, but do answer any questions they may have.
Be an Active Participant in your Medical Care
Many people are taught as 'patients' to be passive recipients of the care provided by medical experts. But don't forget-this is your body, your life. Don't fail to ask questions that are important to your emotional and physical well-being out of fear that you will be 'taking up someone's time.'
Learn about your illness. Visit your local library and consult the medical reference books. Request information from educational associations, such as the National Cancer Institute or the American Heart Association. Ask your doctor, nurses and other caregivers whenever you have a question.
If you educate yourself about the illness and its probable course, you will better understand what is happening to you. You will be better equipped to advocate for personalized, compassionate care. You may not be in control of your illness, but you can and should be in control of your care.
Be Tolerant of Your Physical and Emotional Limits
Your illness will almost surely leave you feeling fatigued. Your ability to think clearly and make decisions may be impaired. And your low energy level may naturally slow you down. Respect what your body and mind are telling you. Nurture yourself. Get enough rest. Eat balanced meals. Lighten your schedule as much as possible.
Say Goodbye
Knowing you will die offers you a special privilege: the privilege to say goodbye to those you love. When you feel you are ready, consider how you will say goodbye. You might set aside a time to talk to each person individually. Or, if you are physically up for it, you might have a gathering for friends and family. Other ways of saying goodbye include writing letters, creating videotapes and passing along keepsakes.
Whatever their forms, your survivors will cherish forever your heartfelt goodbyes.
Find Hope
When people are seriously ill, we tend to get caught up in statistics and averages: How soon will the illness progress? How long do I have left? These can be helpful to know, but they don't always provide spiritual and emotional comfort.
Even if you are certain to die from this illness, you can find hope in your tomorrows, your next visit from someone loved, your spirituality. At bottom, hope means finding meaning in life-whether that life will last five more days, five more months or five more years.
Embrace Your Spirituality
If faith is part of your life, express it in ways that seem appropriate to you. You may find comfort and hope in reading spiritual texts, attending religious services or praying. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because of your illness, realize that this is a normal and natural response. Find someone to talk to who won't be critical of whatever thoughts and feelings you need to explore.
Reach Out for Support
Many of us grew up believing, 'Do it on your own so you don't have to depend on anyone else.' But confronting a terminal illness cannot and should not be done alone. As difficult as it may be for you, you must reach out to your fellow human beings. Most of us know who we feel comfortable turning to when we are under stress. Whom do you turn to? Give yourself permission to reach out for prayers, support and practical assistance.
Hospices are an indispensable resource for you. They are well-staffed and trained to help both the dying person and the dying person's family. Their mission is to help the dying die with comfort, dignity and love, and to help survivors cope both before and after the death. They often offer support groups for people with life-threatening illness. You might also consider seeing a counselor one-on-one.
Whatever you do, don't isolate yourself and withdraw from people who love you.
Copyright 2007, Center for Loss and Life Transition
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Helping a Friend Who Is Dying
By Alan D. Wolfelt, Ph.D.
Your friend is dying. This is an extremely difficult time not only for you, but for your friend and all who care about him. This article will guide you in ways to help your friend-and yourself-during the last days of his life.
When a Friend is Dying
Someone you care deeply about is dying. Confronting this difficult reality for yourself is the first step you can take to help your dying friend.
You will probably come to accept the fact of your friend's impending death over time, and it may not be until she actually dies that you fully and finally acknowledge the reality. This is normal.
For now, though, try to accept the reality of your friend's medical condition, if only with your head. You will later come to accept it with your heart.
Give the Gift of Presence
Perhaps the greatest gift you can give your dying friend is the gift of your presence. Particularly if you live nearby, you have the opportunity to demonstrate your support by being there, literally, when your friend needs you most. Visit your friend at the hospital or at home-not just once, but throughout the remainder of her days. Rent a movie and bring popcorn. Play cards or Monopoly. Sit with her and watch the snow fall. Your simple presence will say to your friend, "I am willing to walk this difficult road with you and face with you whatever comes."
Do respect your friend's need for alone time, though, and realize that her deteriorating physical condition may leave her with little energy. She may not be up for company all the time.
Be a Good Listener
Your friend may want to openly discuss her illness and impending death, or he may avoid discussing it. The key is to follow your friend's lead. Keep in mind that your friend will experience this illness in his own unique way.
Allow your friend to talk about his illness at his own pace. And while you can be a "safe harbor" for your friend to explain his thoughts and feelings, don't force the situation if he resists.
If you can listen well, you can help your friend cope during this difficult time. Your physical presence and desire to listen without judging are critical helping tools. Don't worry so much about what you will say. Just concentrate on listening to the words your friend is sharing with you.
Learn About Your Friend's Illness
"People can cope with what they know, but they cannot cope with what they don't know," I often say. You will be better equipped to help your friend if you take it upon yourself to learn about his illness. Consult medical reference books at your local library. Request information from educational associations, such as the National Cancer Institute or the American Heart Association. With your friend's consent, you might also talk to his physician.
If you educate yourself about the illness and its probably course, you will be a more understanding listener when he wants to talk. You will also be more prepared for the reality of the illness's last stages.
Be Compassionate
Give your friend permission to express his or her feelings about the illness without fear of criticism. Learn from your friend; don't instruct or set expectations about how he or she should respond. Think of yourself as someone who "walks with" not "behind" or "in front of" the dying person.
Never say, "I know just how you feel." You don't. Comments like, "This is God's will" or "Just be happy you have had a good life" are not constructive. Instead, they hurt and make your friend's experience with terminal illness more difficult. If you feel the need to console your friend, simply tell him he is loved.
Offer Practical Help
Your dying friend will probably need help with the activities of daily living. Preparing food, washing clothes, cleaning the house or driving your friend to and from the hospital for treatment are just a few of the practical ways of showing you care.
Stay in Touch
If you are unable to visit your sick friend due to distance or other circumstances, write a note. What do you say? Tell your friend how much she means to you. Reminisce about some of the fun times you've shared. Promise you'll write to her again soon-and then follow through on that promise. Avoid sending a generic greeting card unless you've personalized it with a heartfelt message.
If you're not comfortable writing, consider sending video- or audio-taped "notes" to your friend. Or simpler yet, pick up the phone.
Get Support for Yourself
Someone you care deeply about is dying and will soon be gone. Odds are you will need support, too, as you explore your own feelings about this illness and the changes you see in your friend. Find someone who will listen to you without judgment as you talk out your own feelings. And don't forget to take good care of yourself. Eat nutritious meals. Get ample rest. Continue to exercise. Spend time doing things that make you happy.
Many hospices offer support groups for friends and family of the dying-both before and after the death itself. Take advantage of these compassionate resources.
Realize Your Own Limitations
Not everyone can offer ongoing, supportive friendship to someone who is dying. If you feel you simply can't cope with the situation, try to understand your reticence and learn from it. Ask yourself, "Why am I so uncomfortable with this?" and "What can I do to become a more open, compassionate friend in times of need?"
Do not, however, avoid your friend altogether. People with terminal illnesses are often abandoned by friends and family, leaving them lonely and depressed. Phone rather than visit. Write if you can't bring yourself to phone. Let your friend know that this situation is difficult for you while at the same time acknowledging that your friend's fears and needs come first.
On the other end of the helping spectrum, don't become obsessed with your friend's illness or feel that you must be her only means of support. Do not emotionally overburden yourself.
Embrace Your Own Spirituality
If faith is part of your life, express it in ways that seem appropriate to you during this difficult time. Pray for your friend and your friend's family if prayer is meaningful to you. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because of your friend's illness, that's OK. Find someone to talk with who won't be critical of whatever thoughts and feelings you need to explore.
Seek Hope and Healing
After your friend dies, you must mourn if you are to love and live wholly again. You cannot heal unless you openly express your grief. Denying your grief, before and after the death, will only make it more confusing and overwhelming. Embrace your grief and heal.
Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself. Never forget that the death of someone loved changes your life forever.
Copyright 2007, Center for Loss and Life Transition
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Helping Your Family When a Member is Dying
By Alan D. Wolfelt, Ph.D.
You have learned that someone in your family is dying. You want to help the ill person as well as your family. This article will guide you in ways to turn your cares and concerns into positive actions.
The Shock of the News
Learning that someone in your family is dying is a blow to everyone the news touches. We sometimes think this only happens in other families, but now it is happening to yours. If the onset of the illness was sudden or unexpected, you and the rest of your family will likely feel shock and numbness at first. This is a natural and necessary response to painful news.
You can only cope with this new reality in doses. You will first come to understand it in your head, and only over the weeks and even months to come will you come to understand it with your heart.
Be Aware of Your Family's Coping Style
How you and your family respond to this illness will have a lot to do with how you as a family have related in the past. If your family is used to openly talking about their feelings with each other, they will probably be able to communicate well about the illness and the changes it brings. Families in which people don't talk about feelings and tend to deal with problems individually will probably have difficulty acknowledging the illness and its impact.
If you are reading this brochure, you are already taking steps to acknowledge that someone in your family is dying. You may have found some family members want to discuss the illness, while others seem to want to deny the reality and refuse to discuss it. Right now your family may feel like a pressure cooker: you all have a high need to feel understood, but little capacity to be understanding.
Adjust to Changing Roles
Families sometimes have a hard time adjusting to the changing roles the illness makes necessary. If the head of the household is dying, the other spouse may now have to find a job in addition to caring for the home and children, for example. If grandma acted as the family's binding force before she was ill, her family may now feel confused and disjointed where they once felt strong and cohesive.
Such changes can alter the ways in which family members interact with each other. They may act short-tempered, overly dependent, stoic or any number of other difficult ways.
Consider Getting Outside Help
Perhaps the most compassionate thing you can do for your family during this stressful time is to reach out for help on their behalf. If someone in your family is caring for the dying person at home, consider hiring a homecare nurse instead. Have groceries delivered. Hire a housekeeper to come in twice a month. Your church or other community organization might be able to provide volunteers to help you with any number of tasks. And family counseling can be a healing, enriching experience that helps family members understand one another now and long after the illness.
Hospices are well-staffed and trained to help both the dying person and the dying person's family. Their mission is to help the dying die with comfort, dignity and love, and to help survivors cope both before and after the death. Contact your local hospice early in the dying process. Because they don't want to acknowledge the reality of the impending death, too often families wait until the last few days of the sick person's life. But when they are contacted sooner, hospices can provide a great deal of compassionate support and care up to six months before the death.
Encourage Open Communication, But Do Not Force It
As caring family members, we should encourage honest communication among the dying person, caregivers, family and friends. However, we should never force it. Dying people naturally "dose" themselves as they encounter the reality of the illness in their lives. They may not be able to talk about it right away, or they may only feel comfortable sharing their thoughts and feelings with certain family members.
What the Dying Person May be Feeling
Experiencing illness affects a person's head, heart and spirit. While you wouldn't want to prescribe what they might feel, do be aware that terminally ill people may experience a variety of emotions. Fear, anxiety, anger, guilt, sadness and loneliness are just a few of the emotions they may feel-one at a time or simultaneously.
These feelings are a natural response to terminal illness. Your role as caring family member should be to listen to the sick person's thoughts and feelings without trying to change them. If she is sad, she is sad. Don't try to take that necessary emotion away from her. If she is angry or guilty, that's OK too. You may be tempted to soothe or deny her painful feelings, but a more helpful response is to simply acknowledge them. Listen and understand.
Help Family Members Tend to their Own Needs
When a family member is dying, he or she becomes the focal point for the family. Suddenly everyone is concerned about that one person and her coming death. This is normal, yet it places a great physical and emotional burden on everyone involved.
Family members should not lose sight of their own needs during this difficult time. Encourage everyone to nurture themselves as well as the sick person. Get enough rest. Eat balanced meals. Lighten schedules as much as possible.
Though the family is experiencing a serious time, they should still give themselves permission to be happy. Plan fun events. Allow time to laugh, love and enjoy life.
Embrace Your Spirituality
If faith is part of your family's life, express it in ways that seem appropriate to you. Singly or together, you may find comfort and hope in reading spiritual texts, attending religious services or praying. Allow yourselves to be around people who understand and support your religious beliefs. If some among you are angry at God because of the illness, realize that this is a normal and natural response. Try not to be critical of whatever thoughts and feelings each of you needs to explore.
Seek Hope and Healing
After the ill person dies, you and your other family members must mourn if you are to love and live wholly again. You cannot heal unless you openly express your grief. Denying your grief, before and after the death, will only make it more confusing and overwhelming. Embrace your grief and heal.
Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Encourage your family to be patient and tolerant with themselves. Never forget that the death of someone loved changes your life forever.
Copyright 2007, Center for Loss and Life Transition
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Helping a Child Who Is Dying
By Alan D. Wolfelt, Ph.D.
A child you care about is dying. You want to offer your love and care, but you are not sure how to go about it. Whether you are a parent, friend or caregiver, this article will guide you in ways to turn your cares and concerns into actions.
When a Child is Dying
Children aren't supposed to die. We all believe this in our hearts, yet unfortunately children do die. Confronting this difficult reality for yourself is the first step you can take to help the dying child.
You will probably come to accept the fact of the child's impending death over time, and it may not be until the child actually dies that you fully and finally acknowledge the reality. This is normal.
For now, though, try to accept the reality of the child's medical condition, if only with your head. You will later come to accept it with your heart.
Don't Underestimate the Child's Capacity to Understand
Children have the capacity to understand more than we often give them credit for. Like adults, they deserve our respect and compassion-and our honesty. Sometimes adults, in an effort to protect themselves, assume that children are incapable of understanding or should be protected from the truth. They don't talk directly to dying children about their prognoses, which can leave them feeling alone and isolated.
Children can cope with what they know. They can't cope with what they don't know. Dying children deserve an atmosphere that creates open, two-way communication. Many terminally ill children will go back and forth between wanting to know details about their illness and not wanting to acknowledge they are even sick. It is critical to follow the lead of the child. Always listen first as you support open dialogue about any feelings, concerns or questions they might have. If they ask something and you don't know the answer, simply say, "I don't know."
Be Honest with the Child About Her Coming Death
As the child comes to comprehend her illness and its severity, explain to her that she will likely die-in language she will understand. This may be the hardest thing you have ever done. But honest love is what the dying child needs most.
Depending on her age and developmental maturity, she may not immediately (or ever) fully understand what this means. But she will begin to incorporate the notion of death into her remaining life and will have the opportunity to think about it and ask questions. She will also have the privilege of saying goodbye.
Do not try to protect the child by lying to her about her condition. The dying child who is told she will get better will notice the disparity between this false hope and the way those around her are acting. She will be confused, frustrated and perhaps angry.
We show our love and respect for all children by being honest and open with them. We show our love and respect for dying children by helping them understand that they are dying.
Encourage Open Communication, But Do Not Force It
As caring adults we should encourage honest communication among the child, caregivers, family and friends. However, we should never force it. Children will naturally "dose" themselves as they encounter the reality of the illness in their life. They aren't able to take in all the information at once, nor will they want to.
Answer only what is asked in the child's terms. Don't over-respond out of your own anxiety. Remember-children will determine with whom they want to share their pain. Often, the child wants to protect his parents or other close adults and will adopt a "chin up" attitude around them. This is a normal response and should be respected.
Watch for the Child's Indirect Communication
Children, particularly seriously ill children, are not always direct about their thoughts and feelings. They may make statements, display behaviors or ask questions that indirectly suggest their understanding or awareness of a situation. These cues reflect underlying needs and deserve loving responses. Pay special attention to the child's non-verbal means of trying to communicate any needs or concerns.
What the Dying Child May be Feeling
Aside from the considerable physical toll terminal illness can take, dying also affects a child's head, heart and spirit. While you wouldn't want to prescribe what a child might feel, do be aware that they may experience a variety of emotions. Fear, anxiety, anger, sadness and loneliness are just a few of the emotions they may feel-one at a time or simultaneously.
These feelings are a natural response to serious illness. Perhaps you can be among those who enter into the child's feelings without thinking they have to help the child "get over" these feelings.
Helping the Dying Child Live
Terminal illness presents human beings with an exceedingly difficult and contradictory challenge: you are dying, you know you are dying, yet it is your nature to want to live. Dying children often feel this tension, too. If the adults around them have been honest, they understand that they will soon die, but they still want to live and laugh and play as often as they can.
Help the dying child live happily. Do what is in your power to make him comfortable. Create special, memorable moments for him. Don't completely abandon his normal routine (this may make him feel out-of-control and unprotected), but do work to make each remaining day count. Above all, spend time with him. See that the people who mean the most to him are around him as often as possible.
Peer relationships are very important to children, and the illness will likely create some social and physical barriers to these friendships. As an adult, you can see that friendships continue to be nurtured when possible. Arrange a special party for the dying child. Make play dates with the child's one or two best friends. Help the children write letters back and forth when personal contact isn't possible.
Help the Child Take Advantage of Resources for the Dying
Local hospices are well-staffed and trained to help both the dying child and the dying child's family. Their mission is to help the dying die with comfort, dignity and love, and to help survivors cope both before and after the death. Other organizations, like the Make-A-Wish Foundation, help dying children find joy in their short remaining lives.
Support Parents and Other Important Adults in the Child's Life
A child's terminal illness naturally impacts everyone who loves the child. Not only should you be supportive of the child, you should also be available to support and nurture other family members and close friends. The adult response to the illness will influence the child's response. So, in supporting adults you are supporting the child.
Perhaps you can be a caring companion to the family and help in practical ways. Offer to provide food for the family, wash clothes, clean the house. Listen when they need to talk. Sit with the ill child to give parents a break. Help with other children in the family.
While words may be inadequate, your supportive behavior will be remembered forever.
Don't Forget Siblings
Take special note of the dying child's siblings. Because so much time and attention is being focused on the dying child right now, his brothers and sisters may feel emotionally abandoned. Go out of your way to ensure their needs are being met, as well.
Embrace Your Spirituality
If faith is part of your life, express it in ways that seem appropriate to you. During this difficult time you may find comfort and hope in reading spiritual texts, attending religious services or praying. Allow yourself to be around people who understand and support your religious beliefs.
A Final Word
All children, terminally ill or not, have the right to be nurtured, to be children and to make choices that impact their lives. There is nothing more difficult for families than confronting the death of a child. As caring adults, we have a responsibility to maximize the quality of life for the child, the family and friends.
Copyright 2007, Center for Loss and Life Transition
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Helping Your Family Decide if Organ and Tissue Donation is Right for You
By Alan D. Wolfelt, Ph.D.
If you are in the position of deciding whether or not to donate the organs and tissues of someone you love, you may have many questions. This article answers some of the most common questions and will help you think through your decision.
The Need is Great
The demand for organs far outweighs the number available for transplantation and thousands die each year while waiting for a second chance at life. As the national waiting list continues to grow, the number of organ donors has remained relatively unchanged over the past several years.
According to the United Network for Organ Sharing, there are nearly 70,000 people waiting for transplants in the United States alone. Given the current donation rates, less than half of those waiting will ever be transplanted.
In the United States, a new name is added to the tranplant waiting list every 16 minutes.
While a national list does not exist for those waiting for tissue grafts and corneal transplants, there is a great need for donations of both tissues and eyes. Each year donors provide tissue for approximately 450,000 tissue grafting procedures, including hip replacements, heart valve transplants and ligament repairs. Last year more than 46,000 cornea transplants were also performed in the United States.
Understanding Brain Death
If a person has been declared brain dead, the following information maybe helpful to you.
Brain death means there is no blood flow or oxygen to the brain and that the brain is no longer functioning in any capacity and never will again. The person cannot breathe without assistance, has no pupil response to light and no response to pain. Failure of many organs begins to occur soon after brain death.
Because the heart has its own "pacemaker," however, it will continue to beat as long as it has oxygen. Respiratory support equipment supplies oxygen and keeps the heart beating.
Once a patient is brain dead, he or she is dead. The brain will never recover. But during a short time after brain death, while a respirator keeps the heart beating, some of the patient's organs and tissues may be recovered for transplant.
People who have died what is termed a "cardiac" death cannot donate organs but may still be tissue and eye donors.
Both Organs and Tissues May Be Donated
The heart, liver, lungs, pancreas, kidneys, heart valves, corneas, bones, skin, tendons and ligaments can be donated. The lives of several people can be saved or enhanced through the donations of just one patient.
If You Decide to Donate
If your family decides to give permission for organ and tissue donation, you will first be given an opportunity to say goodbye to your loved one. Use these minutes to hold and touch the body of the person you have loved one final time.
The organ procurement team will then evaluate the patient as a donor and blood samples will be taken for the matching process. When recipients are located, organs and tissues will be removed by a team of surgeons and a specialist trained in organ recovery. Â The entire process may take between 10-30 hours.
The recovery of organs and tissue is a surgical procedure and takes place in a hospital operating room. The person donating is cared for respectfully throughout the entire procedure.
How Donation Affects the Funeral
Because the recovery of organs and tissue is a surgical procedure, an incision or incisions will be made. However, the incisions are typically small and will be covered with clothing for the funeral. You may still have an open casket visitation or funeral if you wish. If you should decide donation is right for you, you will want to consider what clothing would be best for an open casket viewing.
You may want to let others know that your loved one was a donor by including this information in the obituary, the funeral program or the eulogy. Ask your funeral director for ideas.
How Donation May Affect Your Grief Journey
Families of potential organ and tissue donors typically experience the sudden, often traumatic, death of someone loved. For all families the death is senseless. Some families must also cope with the knowledge that death resulted from the violent act of another or a self-inflicted wound.
The unique circumstances surrounding the catastrophic injury that led to brain death creates special needs for these families. Given no time to prepare and often little experience coping with such devastating news, donor families are in need of immediate and ongoing support.
Acknowledging the reality of the death is often complicated by the very nature of the death- brain death. A previously healthy person now lies motionless in a hospital bed with vital signs, yet a family is asked to comprehend and accept the irreversible nature of the injury and finality of the situation. A family may desire time with the body and reassurance that all medical treatment options have been exhausted.
For many grieving families, the decision to donate organs is a helpful way to give meaning to a senseless loss. Family members have told me on many occasions that the most positive aspect of their painful grief experience has been knowing that some other family has been brought comfort because of their loved one's gift. While recognizing this comfort, remember that it is always bittersweet comfort, and does not take away the pain of the grief that results from the death.
If You're Faced with the Decision Right Now
No one should rush or pressure you into the decision to donate. However, you should be aware of time constraints that might prevent you from donating certain organs or tissues if too much time elapses.
Take the time to talk among yourselves, openly and honestly, about your feelings about donation. Consider what the dying person would have wanted. Listen to what your heart and mind are telling you to do.
The United Network for Organ Sharing (UNOS) website (www.unos.org) provides good information on national statistics, legislation, and policy on donation. For information specifically pertaining to tissue and eye donation, the American Association of Tissue Banks and the Eye Bank Association of America would be useful resources. Additionally, the National Kidney Foundation Donor Family Council has a variety of resources specifically for donor families at 1-800-622-9010 or www.kidney.org.
Copyright 2007, Center for Loss and Life Transition
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