Hospice Archives - Page 3 of 3

May 26

Home health nurse helping woman walk across room

Processing & Accepting Your Terminal Diagnosis

By christy.kessler Hospice

You’ve just received the news you’ve been dreading ever since you had that first appointment: your medical condition is terminal. Right now, you may be feeling so many emotions – shock or disbelief chief amongst them. Even as you grapple with your feelings, you’re faced with an exceedingly difficult challenge: accepting that you are dying while striving to make the most of your days. In this article, we will discuss how to process the reality of your terminal diagnosis while also finding a way to continue to live fully even though you are dying.

Processing & Accepting the Reality of Your Diagnosis

The initial shock of your diagnosis may have faded, or it could still be front and center. Take a few days to allow the strength of your emotions to abate a little. Then, for both your own sanity and your family’s, start processing through your new reality so that you can make the most of your final days.

1. Acknowledge You Are Dying

Acknowledging you are dying is the first step to living the rest of your life. If your illness was sudden or unexpected, you’re going to deal with shock, disbelief, or numbness at first. This is a natural and necessary response to painful news. Don’t try to deal with everything at once; take your time. At first, you will understand everything with just your head, but in time, you will 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 every day. However, by acknowledging and not denying the reality of your coming death, you will open your heart and mind to the possibility of a new, rich way of living.

2. Question 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 often establishes a new direction for our lives and makes us question some of our old habits. New thoughts, feelings, and action patterns will begin to emerge; embrace them. The unknown invites you to question and search for the meaning of your life, in the past, present, and future.

3. Accept Your Response to the Illness

Each person responds to news of terminal illness in their own way. You, too, will have your own response. You may feel fear, excitement, anger, loss, grief, denial, hope, or any combination of emotions. By becoming aware of how you respond right now, you will discover how you will live with your terminal illness. Don’t let others tell you how you feel. Instead, find people who encourage you to teach them how you feel. After all, there’s no right or wrong way for you to think and feel.

4. Respect Your Own Need to Talk or Stay Silent

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 need.

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.

5. Tell Your Family and Friends You Are Dying

As hard as it may be, 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, ask a compassionate person you trust to share the news on your behalf.

Just as every terminally ill person reacts differently to a diagnosis, each family member or friend will react differently to your news. Some will sit in shock, cry, or refuse to believe it. Others 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 reminds them of their own mortality, they may even avoid you altogether. Please know that their apparent abandonment does not mean they don’t love you. Give them time to process.

Make sure not to neglect telling children. They, too, deserve to know. 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.

6. Be an Active Participant in your Medical Care

Many people are taught 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 questions of your doctor, home health or hospice nurses, and other caregivers.

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.

7. 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.

8. Say Goodbye

Knowing you will die offers you a special privilege: saying 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 videos, and passing along keepsakes. Your survivors will cherish forever your heartfelt goodbyes.

9. Find Hope & Embrace Your Spirituality

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.

Older man and wife sitting at table praying over meal

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. Hope means finding meaning in life—whether that life will last five more days, five more months, or five more years.

If faith is part of your life, looks for ways to express it. 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, that’s okay; it’s a normal and natural response. Find someone to talk to who won’t be critical of whatever thoughts and feelings you need to explore.

10. Reach Out for Support

While you may have been raised to be fiercely independent, confronting a terminal illness cannot and should not be done alone. As difficult as it may be for you, you must reach out to others, specifically the people you feel most comfortable with in stressful times. Give yourself permission to reach out for prayers, support, and practical assistance.

Home health nurse helping woman walk across room

Additionally, 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. Whatever you do, don’t isolate yourself and withdraw from people who love you.

You still have a journey ahead of you – as you learn to accept and live with your diagnosis. Hopefully, these words have given you hope and a place to start as you process through your feelings and decide how to live the remainder of your days with purpose and intentionality.

*Based heavily on a brochure by Dr. Alan Wolfelt called Helping Yourself Live When You Are Dying. Dr. Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about the natural and necessary process of grief and mourning and to order Dr. Wolfelt’s books.

May 11

Love0

Father holding daughter's hand as they walk outside

10 Ways to Emotionally Support a Dying Child (and Their Family)

By christy.kessler Children, Grief/Loss, Hospice

A child you care about is dying. You want to offer your love and care, but you’re not sure how to go about it. Whether you are a parent, friend, or caregiver, may this guide help you turn your care and concern into action.

When a Child is Dying

In our hearts, we all believe that children aren’t supposed to die. As much as we wish otherwise, the sad truth is that children do die. Confronting this difficult reality is the first step you can take toward helping a dying child. It’s going to take time, so for now, 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.

Little boy in bed checking his teddy bear's heartbeat with a stethoscope

As you navigate through a heartbreaking situation, may these 10 insights serve as a guide to loving a child (and their family) through one of life’s most difficult times…the loss of a child.

1. Don’t Underestimate the Child’s Capacity to Understand

Children have the capacity to understand more than we 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. These adults often don’t talk directly to dying children about their prognoses, which can leave the children 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 child’s lead. Always listen first as you participate in 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.”

2. Be Honest with the Child About Their Coming Death

As the child comes to comprehend their illness and its severity, explain to them that they will likely die, making sure to use language they will understand. The conversation may be the hardest thing you have ever done, but honest love is what a dying child needs most.

Depending on their age and developmental maturity, they may not immediately (or ever) fully understand what their illness means. But they will begin to incorporate the notion of death into their remaining life and will have the opportunity to think about it and ask questions. They will also have the privilege of saying goodbye.

Do not try to protect the child by lying about their condition. If a dying child is told they are going to get better but everyone around is acting down and defeated, they will notice. This may make the child feel confused, frustrated, and perhaps angry.

Instead, show your love and respect by being honest and open with them and helping them understand that they are dying.

3. Encourage Open Communication, But Do Not Force It

As caring adults, we should encourage honest communication between 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. In other words, they will accept the reality of their circumstances in small doses over time. They aren’t able to take all the information in at once, nor will they want to.

Answer only what the child asks. Don’t overrespond out of your own anxiety. Remember—children will determine with whom they want to share their pain. Often, a child wants to protect their parents or other close adults and will adopt a “chin up” attitude around them. This is a normal response and should be respected.

4. 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 the 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.

5. Tune In to the Dying Child’s Emotions

Aside from the considerable physical toll terminal illness can take, dying also affects a child’s head, heart, and spirit.

While you shouldn’t guess at or make assumptions about a child’s feelings, 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. Don’t try to help the child “get over” these feelings; simply enter into their feelings and validate them.

6. Help the Dying Child Live to the Fullest

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 them comfortable. Create special, memorable moments. Don’t completely abandon your normal routine (this may make the child feel out-of-control and unprotected) but do work to make each remaining day count. Above all, spend time with them. Make sure that the people who mean the most are around as often as possible.

Four children of different ethnic backgrounds smiling while playing outside

Peer relationships are very important to children, and the illness will likely create some social and physical barriers to these friendships. When possible, nurture the child’s friendships when possible. Arrange a special party. Make play dates with one or two best friends. Help two children write letters back and forth when personal contact isn’t possible.

7. Take Advantage of Resources for the Dying

Local hospices are well-staffed and trained to help both a dying child and their family. The hospice’s 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 remaining lives.

8. 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 through the grief and stress of the situation. The adult’s 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, or clean the house. Listen when they need to talk. Sit with the ill child to give parents a break. Offer to babysit the other children in the family. While words may be inadequate, your supportive behavior will be remembered forever.

9. Don’t Forget Siblings

Don’t forget the impact a dying child’s illness is having on their siblings. Because so much time and attention are focused on the dying child, his brothers and sisters may feel emotionally abandoned. Go out of your way to ensure their needs are also being met.

10. 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. May these 10 insights help you lovingly care for each person affected by the death of a child.

*Based heavily on a brochure by Dr. Alan Wolfelt called Helping a Child Who is Dying. Dr. Alan Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about helping children in grief. Published with permission.

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