Living with an advanced serious illness
All in all, even under the best circumstances where families have substantial financial resources and savings, great medical and life insurances, medical knowledge, access to great health care and multiple caregivers, an articulated living will or end of life directives, and emotional/spiritual support, it will be an extremely challenging and life altering experience.
Challenges and complexities
This is not an all inclusive list, but meant to highlight only a few of the challenges:
High Anxiety: Research has shown that children with an immediate family member who is dying have extremely high levels of anxiety and for good reason, death is ever present; Anxiety can be manifested in many forms; restlessness, “acting out,” anger, irritability, stomach aches, nausea, in-attention, “on edge,” emotional distancing or clinginess to name a few.
High Stress: Family members may respond to the stress with big energy and little energy or varying between the two extremes. They will also be trying to cope with the stress in various ways, sometimes those ways will conflict with each other.
Exhaustion: There is usually complete emotional, physical, mental, social, and spiritual exhaustion.
Role Conflicts: The demands of the illness almost always creates role conflicts for each family member whether that is between the role as a spouse or the role of a parent, spouse or caregiver, son/daughter pr caregiver, employee or family member; teen/kid or child. This is one of the greatest contributors of stress.
Financial Setbacks: Loss of income and increased medical expenses & secondary care expenses usually confront most families.
Relationship Issues: Life with an illness usually demands drastic changes in where one can spend time and invest energy. Maneuvering through social, professional, and familial relationship can be a challenge, even in a supportive environment.
Ethical Dilemmas: Most families will be confronted to make decisions that they never thought they would have to make, or having to decide between options that are not favorable or agreeable. There may be differences of opinion within the immediate family. In addition, many others will offer unsolicited advice when those dilemmas arise.
So what can a family do?
Keep open, honest, and clear communication in all directions. This includes between adults but also between adult caregivers and children. Most often adults refrain from sharing the truth with children because of our own fears rather than because of their lack of ability to handle the truth. As long as we are sincere, open to answering questions, repeatedly at times, and keep it to their age level, the long term benefits of sharing the truth far outweigh the immediate benefits of concealing information or misrepresenting the truth. Never lie to a child.
Communicate often. Share what you know as you know it, even if that means you need to share that you don’t know anything. You build trust with children when you communicate often about what it is going on and what you do know.
Give children tasks and responsibilities to reduce feelings of helplessness. No one likes to feel helpless, even kids. Soliciting their help and offering choices to help care for the person with the illness can help foster a sense of empowerment.
Provide structure and routine. Children and adults both need routine, especially in the midst of chaos that so often ensues around medical issues. Provide as much structure as you can.
Leave room to be a kid/teen. The person who is dying is important, but they are one aspect of the child’s and/or teen’s life. Children need opportunities to play, have fun, be loud, and enjoy the company of other children. Teens also need opportunities for independence and socializing with other teens.
Role model being ok with not knowing. There will be a lot of unknowns. Children need to see that it is ok not to know everything but still have confidence that something can be done, whatever that something may be.
Advocate for your child, your partner, and yourself. Unfortunately the medical system is not entirely person centered. Furthermore, our society doesn’t handle death, dying, and grief issues well. Therefore, you may have to step outside your comfort zone and speak up for what you and your family may need.
Acknowledge and validate emotions including guilt, fear, and anger. There will be many thoughts and emotions that each family member will experience at differing levels and at various times. All of them are normal and ok!
Forgive. Families are not perfect. When we are in relationships with others, we are bound to disappoint and be disappointed. Acknowledging your human limitations and giving yourself permission to not just disappoint others but also yourself at times, can address some of the guilt one might experience.
Anticipate future needs/wants. If it is possible, this would include preserving conversations between the person who is dying and the surviving family member and keeping memorabilia. If it is a parent who is dying this could include writing letters of memories or videotaping advice for future milestones and events.
Finally, find allies and peers. This might mean finding new people or touching base with people you might otherwise may not know, but surrounding yourself and the children in your care with people who understand and empathize with your situation, can be the best medicine we can think of! If there was something else, we do be pursuing that.
What can somone else do who wants to support a family that has someone dying?
Be open. Take a posture of listening without trying to fix, judge, rescue, minimize, advise, or silver line. If one can do this, and do it well, it will go along way in changing a family’s experience.
Take your cue from the family; Each family is unique and each family member is unique and what works in one situation may not work in another. So what may have helped you may not help someone else, so be open to doing or being whatever the family might need at the time.
Only offer your advice/opinion if it is asked for. As much as we might want to share with the family our thoughts and opinions, that is not what most families need or want. We may be disappointed if they don’t ask us, but we should leave the opportunity to ask, rather than for us to share.
Offer to help with specific tasks. Offering to transport family members, mow the lawn, care give, or go out for a cup of coffee are great tangible ways to say I care.
Don’t have any strings attached when you do offer support or communicate your care. Be flexible and patient. If you are not taken up on your offer or responded to, wait a few weeks and reach out again. A simple “ I am thinking of you” communicates a lot without any added burden or pressure for the family to respond.
Provide opportunities of respite and normalcy. Restaurant gift cards, coffee breaks, watching a movie/ sports, etc… whatever the family interests were before the illness will be a challenge to do in the midst of the illness. Providing opportunities to reconnect back to those things, however creative it might have to be, are generally appreciated.
For more information about our Pathways Program or how to support a family with an advanced serious illness, please contact us firstname.lastname@example.org
Understanding And Supporting The Grieving Teen
If you know a teen who is grieving a death, you may wonder what responses or behaviors you can expect to see and how to help.
Grief is a holistic experience
Grief can affect teens in many different ways: emotionally, behaviorally, cognitively, physically, and spiritually. The following are examples of how grief might look in these realms. Keep in mind that this list is just a sample of the indicators:
Emotional: Every emotion imaginable can be associated with grief. The most common ones include: sadness, anger, confusion, fear, agitation, depression, relief, apathy, joy, restless, guilt, regret, irritability, yearning, increased appreciation, and gratitude.
Behavioral: Dropping activities/hobbies, difficulty sleeping, clingy behavior, regressions, aggression, withdrawal, nightmares, diminished/increased performance at work or school, decrease/increase in social engagement, substance use, over-planning/scheduling of activities.
Cognitive: Difficulty concentrating/confused thinking, forgetfulness, difficulty completing tasks, memory loss, narrowed scope of thinking, intrusive/repetitive thoughts, easily overwhelmed.
Physical: Loss of appetite, weight loss/gain, increased frequency of colds/flu, stomachaches, headaches, and nausea.
Spiritual: Questioning or loss of faith, anger at God or other higher power, strengthening of faith, questioning values, rethinking the meaning of life and/purpose.
So what does this look like in day to day life?
Needs of Grieving Teens and Ways to Support Them
Where did everyone go? How grief affects connections with family and friends.
This episode grew out of a few questions from the community –
Grief affects our connections with others in many ways. Loss can foster a greater closeness with family and friends and it can also wreak havoc on existing relationships, leaving people unsure and disappointed. Many factors contribute to changes in relationships, particularly the role that the person who died played in your family and friend constellation. For some grieving people, especially children and teens, it can feel more comfortable talking with those they aren’t close with, including those who didn’t know the person who died.
Suggestions for ways to make it easier to talk about the person who died in your family:
Valentine's Day is one of the many holidays that shift and change while grieving. As with so many other holidays, the lead-up can be really hard. Advertisements and casual conversations about plans can leave grieving people left out, or eager to flee.
In this episode of the Dear Dougy Podcast, Jana and Brendon talk about strategies for approaching Valentine's Day in a way that opens up space to express love and appreciation.
Some ideas mentioned in this episode:
Whatever you decide, go easy on yourself. There can be so much pressure, both internal and external to think or feel a certain way. Know that it's okay to feel whatever you feel (sadness, anger, numbness, irritation, etc), leading up to and on the actual day.
Alternatives to “I’m sorry for your loss.”
This episode delves into that moment when you find out about a death. Most of us don’t know what to say or do, so we go turn to what we’ve heard others say in similar situation, “I’m sorry for your loss.” While there’s nothing wrong with those words, especially when said with authenticity and full presence, it’s helpful to know how that phrase affects those who are grieving and what you can say instead. Whether it’s getting a phone call with the news, writing out a sympathy card, or learning about a loss during a casual conversation, everyone encounters the dilemma of what to say and how to communicate we care.
“I was so sad when I heard the news about your mom’s death.”
With children and teens, they appreciate an honest: “That totally sucks.”
If you do go with “I’m sorry” expanding it to “I’m so sorry you have to go through this,” or “I’m so sorry this is happening.” can break up the monotony of “I’m sorry for your loss.”
If you’re talking with someone, try reflecting back what they’ve said, allowing them to say more:
“Your dad just died last night.”
“Today’s the anniversary of your sister’s death.”
When writing a sympathy card or email:
Consider sharing a specific memory of the person who died: “I remember so clearly your mom’s smile, it made me feel so welcome.”
“How do I tell my child about the death?” This is the most common question we receive at The Dougy Center. Someone has died, leaving parents and other adult caregivers to struggle with finding the right words to say to their children. In this episode we outline tips for talking with children about a death. Adults can start by attending to their own reactions to the death. Often the thoughts and feelings they experience can impede or enhance having an open, honest, supportive conversation with their children. As an adult, what do you need to sort out with feeling shame, blame, confusion, guilt, or other emotions related to how the person died? How can you keep that as your story and not put it onto your children?
Summary of tips for talking with children:
Tip sheets: http://www.dougy.org/grief-resources/tip-sheets/
Main site: http://dougy.org
In this episode, Jana and Brendon, answer two questions from the community. The first is from a mother of two young children who wonders what she can do with the ashes of her partner. The second from a young adult struggling with whether they should go to the funeral of a close friend’s mother. In this frank conversation, we discuss common and not so common options for what to do with ashes and outline some foundational questions to consider, both for adults and children when deciding.
Two resources with ideas for what to do with the ashes of someone who dies:
In this episode of the Dear Dougy Podcast, Jana and Brendon discuss some of the current mythology surrounding grief timelines. We demystify the idea that there is a recipe for grieving or one right way to go about integrating a loss. Listen to learn new ways of conceptualizing the unfolding of grief. During the discussion, Jana mentioned a couple of relevant resources:
In this inaugural episode of the Dear Dougy Podcast, Jana and Brendon introduce themselves, talk about the history of The Dougy Center, and our work with grieving children and their families. Jana and Brendon also do a little housekeeping with respect to episode timing (weekly) and duration (aiming for 15-20 minutes), as well as what TDC can offer to the podcast community.
Resources mentioned in the show: