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What do you do when you're sick other than rest or medication?

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Here is the link to the article I was interviewed for on Children's Anticipatory Grief. http://www.education.com/magazine/article/anticipatory-grief/ Julie did a great job!

Interview on Helping Kids Cope with Anticipatory Grief

I was recently interviewed (again) by Julie Williams of www.education.com. Here's how it went:

1. How does "anticipatory grief" look in kids, as opposed to adults? Same? Different? How? I'm also thinking that there may be some different texture to this question depending on whether the kids are in elementary school, or in middle/high?

 The big difference I’ve noticed is that kids, teens included, worry not only about “if” the person will die, but how it will impact them—how they will continue to get needs met. This is especially true if the person with the serious illness is a parent. Developmentally kids and teens are more about “themselves,” and they are still dependent on parents, so it is very natural to worry about things like: “Who will take care of me if Mom is too sick or dies?

         If the person with the serious illness is a sibling, kids and teens often feel bad about feeling angry at the brother or sister for dominating their parents’ attention, stressing the family, and generally changing their lives. Jealousy over their parents’ attention can be acted out in an effort to shift attention to themselves. It is imperative for parents to listen to and attend their other children needs, even if it means getting family and friends to pitch in and help with the person who is sick, so the parent is freed up, or to help tend the needs of the siblings (ie. rides so they can continue participation in sports, social events – etc.)

         What is often so painful for kids and teens is the adults around them who give the message (intentional or not) that it isn’t okay to talk about the big “D” word as a possibility or a worry. This leaves them alone to deal with something that likely taps their thoughts and feelings constantly. Younger kids don’t inhibit themselves as well and may blurt out what is on their minds only to be made a promise by an adult that the loved one won’t die. Even if it makes the adult uncomfortable, it is best to reflect the concern of the child: “You are really afraid your dad will die from his cancer,” and avoid making promises by sticking with: “I don’t know,” or “The medicine he is taking should help him get better.”

         Older kids – middle and high school age, are so preoccupied with their own developing identity and body that they may seem indifferent or “inconvenienced” by the impact of a serious illness in the family. Their “plate is full” with developmental tasks and the feelings and thoughts they likely have may be simply “too much” to hold. They may cope by avoiding the feelings and/or the person who is sick.

         School-age children and teens alike can benefit from peer support groups that give them a place to express all that they are carrying. Most often they are relieved to hear other kids talk about some of the taboo feelings they are having (anger, jealousy, impatience, guilt, etc). Ultimately, open communication within the family is the most important.

 

2. Could you comment on your advice to "answer questions honestly?" What's the line here--what's enough, what's not enough, what's too much?

Ultimately, you can’t be too honest. You can, however, talk on too long, give too much detail, have too much of your own ideas and feelings mixed in. Rule of thumb: The less years, the less words and letters in those words.

         Use concrete language with younger kids who will likely be imagining everything you say quite literally. You can use their imaginations to help their understanding (ie. Cancer is like a bump that doesn’t belong on or in the body and it just keeps getting bigger taking over the parts of the body we need to stay alive. Medicine can help make the bump get tiny until is disappears.)

         As kids get older, they understand more abstract concepts and language. Best bet is to give basic, honest information and invite let the child or teen to ask questions any time. That gives you a chance to hear what their concerns are and what they understood. Always end conversations with reassurance—and all-the-better if it is specific: “Aunt Sheryl will be taking you to practice on days I am at the hospital with Dad.”

 

3. What are some ways that kids can feel effective in helping a person who's sick, and are there any kinds of "help" you do NOT advise?

 

 The ways kids want to help are often the ones where they will feel most effective and less helpless. It is also important to keep in mind their age and development. For instance, a younger child might want to give Grandma her medicine, but that would be inappropriate due to safety issues. Instead, s/he can bring the water to Grandma and take the empty cup away. Younger children enjoy tasks they can master and ones that let them feel they are contributing in an important way. A seventeen-year-old may want to help by driving to the store to pick up groceries—a task that matches their developmental stage. A twelve-year-old may want to help make a meal and bring it to the bedside.

         Some forms of help are direct, helping the child/teen adjust to the changes inherent in a serious illness and remain in contact with their loved one. Other types of help are indirect and helpful if the child/teen is not yet comfortable with being around someone who is ill. These could be: making cards for the loved-one, picking out movies, doing laundry, and taking up other chores that the caregiver may need help with.

         It is a likely reality that kids will have to help more when their family is coping with the serious illness of one of its members. They may not be thrilled with this or agree that it makes them feel less helpless. Framing the help as teamwork—supporting one of its members through a difficult time—may help motivate them, as long as the message isn’t undermined with guilt. The types of help to avoid are those that involve personal care (ie. bathing, changing diapers, etc.) and others that the child/teen isn’t comfortable with (ie. avoid forcing them to have contact with person who is sick).  Forcing a caregiving chore to prompt contact between child and loved-one is bound to backfire. Follow the child’s lead and they will reap the potential benefits of quality time with their loved one.  

 

4. What are the most important aspects of a "support network" for kids anticipating a big grief? (I notice that you mention "outlets for sharing and expression," "school/church," "local support groups"--can you comment here? (I'm also wondering about the role of playmates and their parents/or local parent organizations like the PTA?)

A support network, in this case, is a group of people who want to help someone is experiencing a serious illness. All those offers of: “If I can do anything to help, just let me know,” are taken up and organized with one person serving as “coordinator” of the help.

         One aspect of a support network is supporting the family members; picking up the slack that is left when the person fell ill and the spouse/parent became occupied with caregiving. For kids, it could look like friend’s parent signing up to give rides to school events, a member from the family’s church offers childcare after school one day a week, a teacher agrees to meet with the student during lunch to keep the student caught up, the child/teen attends a local support groups for kids experiencing anticipatory grief as a place to share specifically about the complex feelings and thoughts they are having among peers, the school PTA organizes meals to be dropped off twice a week, and so on. The underlying benefit to the kid is that the communication lines are open. The fact that all these people are involved in support means they all know what is happening in this kid’s world. It isn’t a hushed secret, but a matter of fact. Illness is a fact of life that will impact us all at some point, either directly or indirectly. When other children witness their friend go through something so difficult, it can be scary, but with the support of a community, children learn an important life skill about how help works—both giving and receiving.

 

 

5. Finally: I see an inspiring challenge to hold "grief and hope" at the same time, but I'm thinking that kids can be awfully black and white. How can we help them with the rainbow of feelings that is natural at a time like this?

      Even for most adults holding both grief and hope simultaneously is extremely difficult. It often feels more like a rollercoaster of experiencing one and then the other in dizzying sequence at times. The concept of “holding” is really an adult task. For kids, it is more acknowledging, normalizing, and empathizing with their experience of both things that seem so opposite. An exercise I do with kids based on an idea from the book: Becky’s Worry Cup  (a story of a girl coping with her mom’s cancer) illustrates how to help kids with this. I draw a giant cup and tell them to write or draw their “worries” in it each time their worries build up (or do the same at home with a mug and some scrap papers). When we look at them, they are most always the very things they have already begun grieving: “worry my dad won’t be able to talk, worry about mom not being able to braid my hair anymore,” and almost always: “worry he will die.”  A group is helpful in this situation because they quickly realize the deep dark worry they’ve been carrying alone is one that other share too.

         We do the same thing with a big heart. Inside it, I ask them to write, or draw what they hope. Usually these are exactly the opposite of the worry/grief items. They notice this and it shows them what is happening: both grief and hope happen at the same time. The hardest thing about this is the uncertainty: not knowing which way things will go. Our focus then goes to coping with uncertainty with things like: talk to a trusted friend, play a sport, participate in your religious practices, draw your feelings, play a board game with predictable rules, etc. One of the best things parents can do to help kids and themselves with this is to keep as much routine and rules (as were in place prior to illness) as possible during a time when there is so much unpredictable change.

 

 

 

Talking to Children About Death

Education.com Article I was Interviewed for last month.

The Long Road - Anticipatory Grief when a Loved One Has a Serious Illness

Who looks forward to their own or a loved one’s death? 

 Anticipation is something I felt as a child when the state fair opened and later 

when I planned trips abroad; not a feeling I would have associated with a dying 

husband. When I first learned the term: “anticipatory grief,” I thought it was a 

poor attempt of the English language to name a concept that death-denying 

cultures would rather leave un-named. I tripped over the word: anticipatory. 

Trepidation —“trepidatory grief”— would be a closer fit for the kind of grief people with a life-threatening illnesses 

and their loved ones go through up until the point where bad days out number good ones. For me, it was only 

when my husband, Tom, was suffering with little chance of cure, and I was overwhelmed with caregiving, 

did it seem possible to look forward to the death of my beloved. 

The definition of  “anticipate” also includes: “to foresee.” Despite all my hopes and the guilt for even thinking it, 

I did foresee Tom’s eventual death. At least the thought crossed my mind as worry. That was enough to set the 

grief-up-front into motion. It felt like an antsy-anxiety mixed a hearty dose of with low-grade dread of 

looming losses. In my book, BONE KNOWING, I describe it as a pea under the mattress—sometimes hardly 

noticeable and sometimes gratingly uncomfortable—but always there. 

And then there is: “To act in advance to prevent, forestall.”Oh, the effort I put forth trying to prevent what I could- 

n’t have known was inevitable! Bargaining with God was a staple. Guilt-tripping my husband into healthy changes 

and trying to make my love enough for him to live (as if he had a choice), were other game plans that eventually 

backfired on me. When all that remained was hope for Tom’s survival, and he continued to decline, I felt absolutely 

helpless. My arsenal was depleted. There was nothing to do but surrender and redefine hope to be much 

greater than whether he lived or died. In the end, the effort “to forestall”seemed to cause everyone involved suf- 

fering. At the same time, it was an integral part of the journey. 

Preparing oneself is also a part of “acting in advance.” This could prompt end-of-life planning—something that is 

otherwise all too easy to put off and makes a tremendous difference when it’s handled ahead of time. It could mean 

forming a support network, tending financial affairs, or talking to a trusted friend or therapist about the grief that 

arises, even though the loved-one is still living. For me, it was my work with hospice patients and their families that 

taught me about living with death on the horizon. Yet, it wasn’t until Tom was very sick that we began preparing 

ourselves with plans and support. Like many of the families I worked with, I fell into the same dilemma of equat- 

ing end-of-life plans with giving up hope. One of the most difficult parts of anticipatory grief, I believe, is the 

challenge to hold both grief and hope, simultaneously. It’s not a one-or-the-other deal. 

The bad news is that all the grief done up front, doesn’t necessarily mean you get to bypass the grief after the 

death. The good news is that all the anticipating, which is not passively waiting for the big “G”(grief) after the big 

“D”(death), but actually grieving the many losses along the way, can help with adjustment and integrating the 

loved one’s death. When it does happen, there’s a well-worn path to the heart and grief isn’t as likely to be the

blunt blow it might be in a sudden loss. Still, death—no matter how anticipated—takes away whatever is left of 

your loved one—for good. As the primary caregiver, the relief and sudden sense of freedom that came when Tom 

died outweighed his absence, initially. Then came the empty bed. Though I was done grieving the incremental loss- 

es that came with the territory of a sick spouse, a new grief arose. I longed for the partner—the vital man who 

would have comforted me and spooned my body in ourbed; which had, all at once, become mybed. The smaller 

losses leading to this lonely void provided some sense of orientation to the grief that came after Tom’s death— 

bereavement. 

Knowing the grand finale loss is coming down the pike is just part of anticipatory grief.  Meanwhile, there are the 

losses that happen along the way. There is the loss of the lightness inherent to the oblivion of our mortality, the 

loss of a future dream, the loss of certainty, the loss of faith in what held our beliefs up until push came to shove,

 the loss of another income in the household, the loss of parenting together, the loss of a sex life, the loss of freedom

 to leave the house, the loss of independence, the loss of privacy, the loss of a mutual relationship, the loss of a good 

night’s sleep and the loss of comfort. These losses are compounded by the sneaky nature of anticipatory grief. It creeps 

in just when things start to stabilize and fantasies of everything being okay start to blossom. People just far enough outside 

the intimate circle of the ill person’s day-to –day, tend to run with hope more easily because they haven’t been jaded by the 

ups and downs of the illness. Those on the inner circle of care feel the angst of this invisible roller coaster and must keep 

it to themselves, lest they be perceived as compromising hope. 

This was especially true for me while my husband was actively pursuing treatment. I found myself hiding books on 

death and dying that I had checked out from the hospice resource center, for fear others may think I had given up 

on Tom. Only when it was unmistakable that he wouldn’t be getting better and he discontinued treatment, did it 

feel socially acceptable to mourn the losses along the way. In my experience, the cultural discomfort with death in 

this country keeps those anticipating it as a possibility silent and isolated until the death actually occurs. Hospice is 

one of the few organizations that provides support throughout the process. Unfortunately, because of the cultural 

discomfort, these services are often avoided and associated with “giving up.” An important distinction between 

anticipatory grief and bereavement is cultural support and understanding. 

After Tom’s death, I found my grief was not only allowed socially, it was expected.  Grief was then a demonstration 

of love for Tom and not the lack of it, as it had been while he was sick. The whole thing was backwards and I felt 

like I was on the wrong page at the wrong time; hence, came my interest to promote a better understanding of 

anticipatory grief. It is a long road of grief to travel and a little paving may help.   

Others have been paving the way of understanding anticipatory grief for some time. Kenneth Doka, Ph.D., is 

one of them. He uses the term, disenfranchised grief for grief that isn’t validated or supported. When I first 

read this term, I thought it a better fit than anticipatory grief, but then I thought of a friend who experienced 

both types of grief simultaneously and a friend who experienced a community of support for his anticipatory grief 

during his wife’s illness. The former was a friend who was divorced at the time that the father of her young children 

finally succumbed to ALS. Insensitive comments like: “Well, at least there won’t be anymore custody battles,” 

invalidated her compounded grief.  She lost him twice without resolution of the relationship. Her anger only gave 

people an easy out to disqualify her from the their sympathy. The latter, was a friend who was involved in a men’s

 group at the time of his wife’s diagnosis and continued to derive emotional support for him self there throughout her 

illness and death.  He was lucky to have such a community and courageous to use it. Anticipatory grief doesn’t have t

o be disenfranchised grief, but it’s too often a form of it. Doka writes in Living with Grief When Illness is Prolonged (1997), 

“The antidote to disenfranchised grief lies in the simple acknowledgement that every circumstance of loss, including loss after 

prolonged illness, creates its own unique grief.” We all need validation of our losses, without the ranking and qualifying of

 them from others. 

“At least you had time to grieve and say goodbye, what if his death was sudden?” is a common phrase used with the best intention. 

Yes, I can vouch for the side benefits of having a window of opportunity for both the person dying and those close to him/her. 

And there are complications along the, sometimes, very long road. Therese A. Rando, another contributor to the book: Living with

 Grief When Illness is Prolonged (1997) and to the study of anticipatory grief, lists the issues the anticipatory griever is up against:

 “ . . . powerlessness, fear, uncertainty, confusion: violations of the assumptive world; ongoing losses; personal depletion from the 

stress arising from demands for major re-adaptations and investments of self, time, and finances; long-term family disruption and 

disorganization; balancing of opposing needs, competing demands, discordant roles, clashing responsibilities, and antagonistic tasks;

 traumatizing physical, emotional, and social experiences during the illness; and major reactions of guilt, sorrow and depression, anger 

and hostility and anxiety.” Whew! It isn’t a matter of comparing whether a sudden or anticipated death is worse to grieve; it’s a matter 

of disintegrating any myths getting in the way of a healthy grief process. Rando (1997) also believes that a person experiencing the 

constant threat of their own or a loved one’s death, by way of a terminal illness, constitutes the clinical criteria for PTSD

(post traumatic stress syndrome). Coming across this tidbit helped me to find a context for some of my craziness during that time 

(ie. hyper vigilance, restricted range of affect, feeling detached) and even after Tom died (recurrent dreams of him coming back, 

sense of a foreshortened future, etc.).  The symptoms of avoidance (avoiding thoughts, feelings or conversations related to 

the trauma-death) helped me understand those around me who responded differently than I did. As a hospice social 

worker, it was more often the case than not, that people didn’t want my support because it meant they would have to 

talk about it. Initially, I assumed that talking about it was the best thing. At least it was what I needed and it is what I 

was taught at school. I learned quickly that talking about everyday things could be a way of normalizing the experi- 

ence. “Normal” could be relief to people who had been on the road of this grief too long. In the safety of our relation- 

ship, it seemed our task was to make dying and grief integral to living. After all, it was what they lived with every- 

day — it was their “normal”. 

Elizabeth Kubler-Ross established the five phases of grief that someone who is dying goes through and these 

have been found to apply to the loved ones of that person before and after the death as well. The phases: denial, 

bargaining, anger, despair and acceptance can occur out of sequence, stretch out over time, vacillate between 

each other rapidly and be revisited, just when you thought you were safely in acceptance. Even when Tom’s 

prognosis was “days” and I thought I had completely cleared the denial phase (Thank god! It felt like being the 

emperor with no clothes); I’d slip into daydreams of being at our children’s graduations together. 

Those five phases can look different before the loved one dies than after. I had done so much bargaining before 

Tom died, in hopes of preventing his death, that I had discarded such exchanges with God after his death. I became 

skeptical of praying for outcome and, instead, I became a fan of finding meaning in whatever “is.” Acceptance came

in waves and had many layers. The acceptance I experienced when I learned of Tom’s cancer, was probably closest to the one I 

felt at his deathbed, before and after all the practical aspects were considered. After his death, it took my insides  a long while 

to catch up with what looked like acceptance on the outside, as I eagerly moved on with my life. Recurring dreams of Tom let 

me know that part of me was still comprehending the loss. 

Though there are similarities to post-death grief and anticipatory grief, Rando notes that anticipatory grief  “ . . . is different 

(than post-death grief) in nature and impact, physiology and experiences of ambivalence, denial, hope, endpoints, and accel- 

eration.” She observes that just because one knows of a terminal illness, it doesn’t mean they begin grieving the impend- 

ing loss. I noticed in my husband a denial on some level kept him from being paralyzed by fear or depression (for a time), 

while on other levels, the knowledge of impending death, gave him permission to live fully. I saw it with patients at the hospi- 

tal as well. At times it looked like a purposeful denial to avoid a chain reaction of stress that might give the illness and upper 

hand, and at others, the patient or a family member, went on about their life without flinching, without even a glance in the 

direction of the future. Those patients and families usually declined hospice care and were often offended that it was even 

being offered. Based on my experience with Tom, I’d say they missed out on a once-in-a-lifetime opportunity. Though, in the 

end, there really isn’t a rightway, there is only the way we do it and how we live with that. 

Finally, I found a definition of anticipatory grief that pulled a fuller meaning from the semantics. Rando (1997) says: 

“Anticipatory grief is a complex and multidimensional experience that can be defined as follows: . . . the phenomena encom- 

passing the process of mourning, coping, interaction, planning, and psychological reorganization that are stimulated and 

begun in part in response to the awareness of the impending death of a loved one and the recognition of associated losses in 

the past, present, and future. It mandates a delicate balance among the conflicting demands of simultaneously holding onto, 

letting go of, and drawing closer to the dying loved one.”  There it is again, the challenge of holding both hope and grief, 

staying close and letting go—all at the same time. Paradox and contradiction run rampant in anticipatory grief. 

Though there are so many losses, there are unforeseeable gains within them. Spelling out this paradox is like trying to grasp 

water and in doing so I run the risk of making the gains from them sound like silver-lining niceties. Besides, there is no guar- 

antee that one will find the gems.  Certain poetry moves one when its timing is right and the listener is open. At the time, I 

read and re-read how to make the experience of anticipatory grief meaningful, to no avail. The meaning popped into the 

strangest unexpected moments and could never have been planned or conjured up like a recipe. Ultimately, it was my heart 

cracking open out of grief, making itself big enough to hold both letting go and drawing closer — that was the gem. It came 

by the way of traveling the long road of anticipatory grief—no short cuts. 

Doka, K. J. (Ed.) (2002) Disenfranchised Grief: New Directions, Challenges and Strategies for Practice. 

Champaign, Illinois: Research Press. 

Doka, K. J. (Ed.) & Davidson, J. (Ed.) (1997) Living with Grief: When Illness is Prolonged. 

Washington, D.C.: Hospice Foundation of America 

Kubler-Ross, E. (1973) On Death and Dying. London and New York: Routledge. 

Rando, T.A. (1997) Living and Learning with the Reality of a Loved One’s Dying: Traumatic Stress 

and Cognitive Processing of Anticipatory Grief. In K.J. Doka (Ed.) Living with Grief: When Illness 

is Prolonged. Washington, D.C.: Hospice Foundation of America 

Jennifer Allen copyright 2008. Reprint permission granted for personal use / support group use only.

Handling a Death in an Elementary School Community

A reporter from Education.com contacted me last night with questions about handling death in an elementary school community (student or teacher). Today, I found myself talking about the subject again in a presentation I gave on creative interventions for children's grief. The challenge is: how can generations of adults who were not educated about healthy grieving support the healthy grieving process among a community of children?  The adults in a grieving child's world are often inept when it comes to addressing a death. Children pick up on the fear adults have around this and on goes the taboo. Here are answers I gave to the three questions she asked:

1. What are healthy ways of talking about death among little kids? Check out the article in my website  This is re: serious illness of loved one, same rules apply to death. Bottom line: Be honest, direct & age appropriate. Correct information (even if painful to give) is much better than what the imagination of a child can conjure up. It also builds trust in the relationship. Age appropriate means less words for less years. Less letters in the words for less years. (ie. There was a car crash and Uncle Jerry head got hit so hard, his brain can't work anymore and he died.") Avoid indirect words like: "passed away."  Use examples in nature to explain death that child can relate to (ie. dead insect - body is still can't move.) 

2. How can memorials help in kids' grieving process?  Participation in memorials, funerals, etc. should be optional for the child. If s/he decides to go, s/he should be prepped on what to expect. Often the reason they don't want to go is that is an unknown. Help orient them and be sure they have a support buddy with them (another adult who isn't too caught up in own grief if parent is). Participation in death rituals helps kids to realize the loss, understand death (ie. body really doesn't work), make closure with the support of their community, and begin integrating the loss. Otherwise, it is like the person who died simply disappeared. The grief process (which is a healing process) could be postponed by the lack of realization of loss. 

3. What are lessons in the long-run our kids' will get if grief is supported in the school community? Grief is part of living. Too often we are alone in this part. Kids especially. They often feel "different" at school because we live in a culture that has great difficulty with knowing how to handle death and grief. Learning how to grieve  in a healthy way, supported by one's community (for a child, this is family and school), is a potential gift that comes out of  loss. Children learn that grieving is normal, even the aspects of it that feel "crazy" or more intense than any feeling they may have had to date. Within a community feeling the loss, they learn they are not alone, that friendships can become closer with shared experiences, and that life does go on and hearts do heal. Confidence in their ability to cope and heal is planted and they are better equipped when faced with other losses down the line.