Legacy is defined by Merriam-Webster as a “gift by will especially of money or other personal property” or “something transmitted by or received from an ancestor or predecessor or from the past”. Legacy projects can be an important healing step during the end of life journey and can help bereaved individuals throughout their grieving process.
Children tend to be very aware of their surroundings and can understand more than what adults give them credit for. Incorporating children into legacy projects with a dying family member is an effective and meaningful way to welcome them as part of the journey. Moreover, it enables adults to assess the child’s understanding of the dying process and the specific scenario they are facing. This knowledge can help adults to continue providing support and answer the child’s questions as the journey continues. Children are often not included in complex medical decision making, medically driven conversations, or discussions about what end of life care may look like. In some instances, the terminally ill loved one is being cared for in the same household in which the children are living and they are being exposed to the entire journey. Legacy projects offer a way to integrating children in the process and enables them to feel included in the journey. Children’s understanding of death is related to their age and cognitive development. The following is a brief summary of children’s developmental understanding of death and dying:
Infants and Toddlers: When facing the death of a loved one, infants and toddlers have no concept of time. They do not understand that death is final and permanent. They are still actively working on their comfort skills and separation from a parent/caregiver can have a large impact on their psyche and behavior. With infants and toddlers, routine is extremely important and maintaining consistency as much as possible will help them to adapt to change gradually. Suggestions include having the same food for breakfast, bringing the same blanket to daycare with them, and having the same caregiver for drop off/pick up can help to minimize the stress they may feel as a parent/loved one progresses in their illness.
Preschool-aged Children: Preschool-aged children have greater understanding of the concept of death. However, they are also entering the social and imaginary world stage of their development. Use of imaginary play, such as playing doctor, is instrumental in their development, but this can lead to a false sense of healing when confronted with the illness trajectory of a loved one or the impending death of a loved one. At this age, children may feel they can “fix” the parent/caregiver and feel frustrated or mad when the adult does not get better. It is important to be honest about what death is and not associate common actions with death. Referring to a death as “going to sleep” or “resting” can instill a sense of fear. That is, because the deceased adult does not wake up, children may fear that if they go to sleep, they will not wake up either.
Elementary Through High School-aged Children: Within this age group, children understand the permanence of death. It is not uncommon for children to take on a strong feeling about the illness (e.g., “I hate cancer”) and use this to form part of their identity. Children in this age range are often asked to take on more adult roles, such as helping with house chores or looking after their younger siblings. Adults commonly make the mistake of imposing parentified roles onto children at this stage. Phrases such as, “You’ll be the man of the house” or “You’ll have to look after your siblings like a mother” can place added pressure on these children, creating another burden while they are trying to process their own grief of losing a parent. Honesty and transparency are crucial tools to connect with children in this age range. Answering their questions thoughtfully and even including them in some decision making can greatly impact how they navigate the end of life journey and bereavement process.
What legacy projects may be good for children? The simple answer: any which engage them in the process and help them to express their feelings about the end of life experience. Try not to overcomplicate the projects and always keep their age and developmental stage in mind. For example, an 18 month old child is not necessarily going to sit on a hospital bed with his hand in a bucket full of cold plaster waiting for it to dry around his and his grandfather’s hands. However, the three older granddaughters who are 11, 13, and 15 years old, are more likely to engage in a project which requires patience.
Projects which work best for infants/toddlers and young children: (See Appendix A for some examples of these projects.)
- Taking photographs of the terminally ill person holding the children, holding their hands, or any pose which is special to the family.
- Upcycling the loved one’s clothing into something the children can wear. For example, a patient’s favorite shirt can be sewn into a onesie for a newborn or a baby who is not born yet.
- Creating memory bears (sewn stuffed bears) made from the patient’s favorite clothing.
- Coloring books with younger children and taking pictures during the activity.
- Making an audio recording of the terminally ill patient reading a favorite storybook so that the child can maintain the tradition of reading bedtime stories even after the patient has died. Recordable storybooks can also be purchased for this purpose.
- Helping the patient write letters to their baby/son/daughter/grandchild.
- Creating greeting cards which celebrate milestones and having someone deliver it to the intended recipient upon the occasion. Examples of milestones include 21st birthdays, high school/college graduations, weddings, baby showers, etc. When writing milestone notes, it is important not to focus only on the success of recipient. That is, including phrases like “I hope you became a doctor, are married and have 3 children by now” could inflict a sense of failure if the recipient has chosen a different life path.
Projects which work best for middle school/high school aged children: (See Appendix A for some examples of these projects.)
- Any of the above suggestions which seem to capture the engagement of the child (such as Milestone Cards).
- Recreating photos from earlier childhood years. For example, a 17 year old daughter and her mother may pose sitting in the same rocking chair that the mother used to rock her as a newborn baby.
- Journaling with the terminally ill person.
- Helping the terminally ill person write their obituary or eulogy.
- Passing on a prized collection such as stamps, coins, baseball cards, etc.
- Making a playlist on a streaming site of the ill person’s and child’s favorite songs together.
- Depending on the patient’s stamina, the patient can be an escort to a special dance such as a homecoming, prom, or father/mother dance.
Be careful about creating certain routines with younger children. If legacy projects are started early enough during the end of life journey, there could be an extended period available to create memories and legacies. If certain routines are established, such as getting ice cream at the local ice cream parlor every Sunday, the children may have mixed emotions about this memory and may not want to return without their loved one after the loved one’s death.
If the loved one who is terminally ill is a sibling, some of these strategies can be used to help the children create a special bond during the sickness. Coloring pages, milestone cards, and “advice cards’’ from an older sibling are simple legacy activities which can be completed with younger children who are losing an older sibling. If an older sibling belongs to a local sports team, reaching out to the coach to see if the terminally ill younger child can be an “honorary captain” of the older sibling’s sports team is a great way to create a memory. Any t-shirts or clothing made to commemorate the event can be turned into a memory bear.
In summary, legacy projects should be kept simple, especially those involving young children. The activities should be tailored to the children’s developmental stage. Time is a blessing; this is the key element which makes legacy projects so special. These projects capture a moment in time which can last forever.
Merriam-Webster. (n.d.). Legacy. Retrieved from https://www.merriam-webster.com/dictionary/legacy
Muriel, A. C. (2019, June 31). Preparing children and adolescents for the loss of a loved one. Retrieved from https://www.uptodate.com/contents/preparing-children-and-adolescents-for-the-loss-of-a-loved-one/