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 the 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 someone 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 for 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 pathways@dougy.org