Family Issues in Terminal Illness

There is no one right way to deal with anticipatory grief or prepare for the death of someone you love. Just as all relationships are different, so are the losses you will experience as that relationship comes to an end. If the person has endured a long illness, you may have already been mourning a number of losses for quite some time: the loss of companionship, the loss of intimacy, the loss of shared hopes and dreams, even the loss of your own sense that life was stable and secure. But as their death becomes imminent, the overarching question of how you will manage the pain of permanent separation may be foremost on your mind. 

One thing to bear in mind as you navigate this challenging territory is that there is no way to avoid the pain that the loss of your loved one will cause. It is natural to look for a path forward that allows you to accept their death with equanimity and calm. But grief is the other side of love. If you love someone, you will hurt when they are no longer in your life. You will feel their absence deeply, particularly if you were very close. And while this is a frightening reality to contemplate, accepting it can be the first step to preparing for your loved ones death. 

Another important aspect of dealing with anticipatory grief is saying what needs to be said. Many people who lose a loved one suddenly suffer terribly because they never got to say “I love you” one last time, or never got to apologize for something they had done. But when you know your loved one is dying, you have the time to share your feelings and have meaningful conversations while they are still alive. Admittedly, this can be very difficult. It requires acknowledging that time is short and there may not be an opportunity to speak with your loved one again. But it also can be very freeing, both for you and for the person you love. 

In his book “The Four Things That Matter Most” Ira Byock provides a blueprint for these kinds of conversations that can be enormously useful as you think about what you want to say. He suggests that these four phrases “I forgive you,” “Please forgive me,” “Thank you” and “I love you” form the framework for all of the deeply felt emotions we want to convey as we say good-bye. You may want to write them down, then fill in your thoughts about each one. 

• What forgiveness do you owe your loved one that you have withheld out of resentment or hurt? 
• What have you not told them you are sorry for because you felt guilty or ashamed?
• What have they given you that you will always be thankful for? 

These are profound questions that get to the very heart of your relationship. Exploring them together can bring both you and the dying person a sense of completion and peace. 

And, of course, “I love you and I will miss you so much” can never be said too often as you prepare for your loved one to die. 

Sources
Ira Block: “The Four Things That Matter Most”. https://www.amazon.com/Four-Things-That-Matter-Most/dp/1476748535

When a parent is diagnosed with a terminal illness, it is best to talk with your children soon afterward. Doing so may help children cope more effectively with the end-of-life process, particularly if their parent has been ill for a long time. 

Medical experts recommend open and honest dialogue about what will happen, so parents can readily address their child’s fears. Although the discussion should be age-appropriate, language ought to remain clear and concise. Creating a safe space in familiar surroundings may also help a child better cope with learning about their parent’s illness.

Here are a few recommendations for initiating the conversation:

• Be specific about your or your loved one’s illness and what the decline may look like. Depending on the child’s age, you may reference a specific diagnosis or you may simply say something like “Dad is very sick.”
  
  
• Ask questions to determine how much the child already knows or suspects. Something open-ended like “Have you noticed that Daddy has been sleeping a lot lately?” gives the child a chance to talk about what they’ve noticed and their fears about what it may mean.
  
  
• Reassure the child that they will not get sick too and that you or the other parent will be there for them.
  
  
• Explain to the child that the illness is not their fault, as children sometimes tend to blame themselves for catastrophic events.
  
  
• Try to remain composed, but don’t hide your feelings or pretend everything is fine.

Maintaining the child’s normal routine and preserving family time as much as possible may also help them cope more effectively.

Talking to children about death

According to a paper published in the journal CA: A Cancer Journal for Clinicians, how well a child manages bereavement may depend upon how skillfully the surviving parent guides them through their loved one’s terminal illness, including expectations around the death. While little research exists on how to best nurture a child through such a difficult time, experts at Children’s Hospital of Philadelphia offer some communication strategies for explaining death to a child. 

Below are a few key points to assist parents through these difficult conversations.

• Use accurate terms to describe what happened, e.g. the person died or they are dead. Depending on the age of the child, you may need to clarify this in very simple terms, such as “Their body no longer works and they are not going to be here with us anymore.” Avoid vague euphemisms such as, “passed away” or “gone to sleep,” which can confuse and frighten a young child.
  
  
• If the child is asking questions about the death, ask clarifying questions before providing an answer: “What makes you curious about that?” or “What made you think about that?” Listening to their responses may help you better understand the child’s fears and be better prepared to reassure them. 
  
  
• If you don’t know an answer to a question a child asks, be honest and tell them you don’t know, but you will try to find out. 
  
  
• Children learn best by watching and listening to adults, so model honest communication and express your feelings openly. Let the child know that you are sad and miss the loved one who died very much. Talk about good times and memories and encourage the child to share their thoughts. Displays of intense emotion should be saved for private time, but crying in front of your children shows them that they can express their feelings too. 
  
  
• Don’t overload a child with information. Answer their questions honestly and thoroughly, then give them time to just  “be kids.” They will let you know when they are ready to talk some more. 
  
  
• Keep in mind that a child’s understanding of death is influenced by their age. Here is a brief overview of children’s perception of death at various developmental stages: 

Toddlers

Toddlers are not able to comprehend death and do not grieve in the same way as adults. However, they can sense the emotions of those around them and may feel uneasy, confused, or scared if others are sad and upset. Honesty is the best policy when discussing death with a toddler. For instance, you could say something like “Grandma has died, and we won’t be able to see her again.” Let your toddler know that it is normal to feel sad when someone you love dies. Even though they may not fully understand what has happened, they should be encouraged to express their emotions and share their concerns. 

Preschoolers

Children aged 4 to 6 don’t fully grasp the concept of death, perceiving it as temporary and reversible. They are also prone to magical thinking and may blame themselves for the loved one’s death. For example, if they felt angry at mom or dad and they are suddenly gone, they may believe their anger caused the parent to disappear. Open and honest communication with your child is crucial at this time. It’s important to explain that death is permanent, and no one is to blame. Don’t shy away from difficult questions such as, “Will I die?” or “Will you die?” Offer meaningful, yet reassuring, explanations such as, “Everyone dies someday. But I plan on us staying together for a long, long time”.

School age children

Between ages 6 and 12, children develop an understanding of death through personal experiences, like seeing a dead insect or bird. In this way, they slowly learn that death means the absence of life. With that said, younger children may still need help grasping death’s permanence. You may need to explain in very concrete terms that the person they love is no longer alive and  can no longer eat, drink or move. Encouraging the child to attend the funeral or visitation can reinforce that death is irreversible and a natural part of the cycle of life. 

Teenagers

Teens generally comprehend the notion of death (although they often presume they are invulnerable), recognizing that it is an irreversible loss. They grieve and mourn as deeply as adults, but because they strive for emotional independence, they may express themselves more openly with peers than with you. In some cases, especially if the teen had a difficult relationship with the parent who died, they may act out in disturbing and even self-destructive ways. This is normal, but it’s important to set boundaries as to what is acceptable and what is not. Let the child know you are there for them, but at the same time emphasize that any behavior that puts them in harm’s way is not an acceptable outlet for their grief. 

Seek out support

Helping children navigate the complex landscape of the terminal illness and eventual death of a parent is an almost insurmountable task, especially if you are also caring for your ailing spouse. It’s important to recognize that you can’t do it all alone, and to reach out to the community and health care resources for help. If your loved one is in hospice, the hospice provider may be able to refer you to an agency or organization that can provide respite assistance or emotional support. School counselors may also play an important role in helping a child who is struggling with their emotions both in and out of the classroom. You might also consider taking your child to a mental health professional who can provide a listening ear and help the child practice ways to cope with what is happening. 

Age-appropriate books may also be a wonderful way to help your children express their fears and feel less alone. See our Healing Library to find books for adults and children who are struggling to make sense of serious illness, loss and grief. 

Sources

“Current Approaches to Helping Children Cope with a Parent’s Terminal Illness”. American Cancer Society Journal. https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/canjclin.56.4.197

“Explaining Death to a Child”. Children’s Hospital of Philadelphia. https://www.chop.edu/health-resources/explaining-death-child 

“Telling a child someone is dying”. Marie Curie. https://www.mariecurie.org.uk/help/support/diagnosed/talking-children/children

A terminal illness affects the entire family, and relationship dynamics are certain to change. According to the National Cancer Institute, some areas that often change include the following:

• Roles: In every relationship, partners tend to assume certain roles. For example, one may be the “take charge” person who handles most of the planning and decision making, while the other assumes a more passive role. But when a spouse becomes ill, these roles are very often reversed. The adjustment can be difficult for both people involved. 
  
  
• Responsibilities: Just as each partner in a relationship takes on specific roles, each partner usually handles certain responsibilities. For example, one person may take care of the cooking and cleaning, while the other takes care of the yard and pays the bills. But when one partner becomes ill, the other partner will need to shoulder more responsibility in addition to assuming a caretaking role. 
  
  
• Physical and emotional needs: It can be very difficult for a person who’s accustomed to functioning independently to ask for help with things like fixing meals or getting dressed. Similarly, partners may find it hard to discuss how they’re feeling about the diagnosis and the changes taking place in their lives. But asking for help and giving and receiving emotional support is especially important during this challenging time. 
  
  
• Physical intimacy: Serious illness and the side effects of treatment may have significant effects on both sexual performance and sexual desire. Nonetheless, couples can still share physical intimacy in other ways. If talking about intimacy is uncomfortable for either partner, a therapist or social worker may be able to facilitate communication and offer suggestions that may help. 

Additionally, adult children or children in their teens may need to take on more responsibilities when a parent is ill, which is often quite challenging for both the parent and the child. Depending on the child’s age and level of emotional maturity, they may resent having to devote time to caretaking or household chores or working a part-time job to help pay the bills. Or they may participate very willingly, but still miss doing things they enjoy. In either case, the parent who is ill will often feel guilty for burdening their child, which can worsen feelings of helplessness, hopelessness or despair. 

In almost every situation, family members of someone who is seriously ill will also feel a sense of loss. Even though their loved one is still alive, they are not the same person they were before. They may look different, be less able to take part in day-to-day activities and even have trouble communicating at times. They also may be suffering physically and emotionally, which can cause everyone in the family to lose hope that their life will ever improve. These types of losses compound the anticipatory grief that the family is already experiencing because they know their loved one is going to die. While this can be quite painful for everyone, it is a normal reaction to what the family, both individually and collectively, is going through.  

Sources

“Coping With Cancer – Changes for the Family”. National Cancer Institute. https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/changes-for-family