LOSS & GRIEF: A manual to help those living with ALS, their families, and those left behind. Mourn not just for the loss of what was but also for what will never be. And then gently, lovingly let go. Copyright © application pending 2007 by The ALS Association, St. Louis Regional Chapter All rights reserved. No part of this book may be used or reproduced in any manner without written permission of the publisher, except in the case of brief quotations embodied in critical articles and reviews. Special Acknowledgement to Ms. Jan Korte-Brinker, TKS Graphics, Highland, Illinois for assisting with the design of the front cover. The ALS Association, St. Louis Regional Chapter is dedicated to improving the quality of life for those affected by Amyotrophic Lateral Sclerosis, educating the community, and supporting research. To learn more about the services provided through The ALS Association, St. Louis Regional Chapter in Eastern Missouri as well as Central and Southern Illinois: visit our website at www.alsa-stl.org Table of Contents I. Patients with ALS II. Adults, Spouses, and Caregivers III. Parents and Caregivers of Children ▲ Children – 12 and under ▲ Teenagers – 13-18 ▲ Young Adults – 18-25 ▲ - pullout sections for parents to give to children LOSS AND GRIEF As you deal with your diagnosis of ALS and its effects on your life, you and your family will be confronted with numerous changes and losses. You will face the loss of physical abilities coupled with changes in your role and responsibilities within your family and your community. In addition, you will be facing the inevitable loss of life, while trying to understand and reconcile the experience of having ALS. The degree of loss you experience with each change will be determined by the importance you and your family place on that item or ability lost. You should know, however, that each loss you face, whether you deem it “big” or “small,” will result in some level of grief for both you and your family members. Grief is an automatic process that is experienced by everyone who faces loss. Often, grief is identified solely with mourning and death. However, it occurs with every loss in your life, such as moving, losing your job, divorce, the death of a pet, ending a relationship, or being diagnosed with a serious illness. You should be aware of this occurrence and understand its impact. Not only may you feel a variety of emotions due to grief, but it may affect you physically, mentally, or spiritually. As you identify losses, it is important that you recognize your reactions to them and allow yourself time to process, adjust, and grieve. You may want to consider expressing your feelings and experiences with someone you trust, such as a friend, family member, clergy, or professional counselor or social worker. Once a PALS’s journey has ended with ALS, family members will begin a bereavement process through which they will mourn and face a future without their loved one. The grief process may be very different for each family member, depending on their relationship to the PALS, their chronological age, or their developmental stage. Their closeness to the deceased and their anticipation or preparation for the death will also affect their bereavement process. Grief is as different for each family member as ALS is for each PALS. However, through understanding grief, allowing family members their own time and space, and utilizing tools and resources, each family member can move through their grief in a healthy and productive manner. This manual is designed to provide you and each of your family members with tools, resources, and information about grief to assist you during this difficult, emotional, and often frightening journey. Remember, confronting grief and working through it can result in higher quality of life during your end stage ALS, both for you and for those you leave behind. But YOU must work through your grief; it is an individual and personal process that entails active participation. To help each of you in this process, this manual is divided by individual and/or age as follows: • One section is specifically for the PALS, as you adjust to the on-going changes and losses in your life and prepare yourself and your family for the future. • One section is provided for caregivers and spouses to help educate about grief, offer tips and resources for support, and provide hope for the future you face without your loved one. • A section for parents and caregivers of children in the family offers information on how children understand and process grief at different ages. It also offers age- appropriate grief resources specifically for children, such as books, websites, and local support groups and camps. • A pull-out section provides a list of books and websites that are appropriate for children (ages 12 and under), as well as simple educational information about the grief experience. • A packet of educational materials, helpful tips, and other resources for grief support are compiled for teenagers (ages 13-18). • An additional packet for young adults (ages 18-25) addresses the special bereavement needs of those individuals who may be living out of the home or away at college, but probably have do not have the social network or emotional experience for dealing with death and grief. This entire book is intended as a tool for addressing end of life issues, facilitating discussion between family members, and helping educate and prepare the family for an uncertain future. Please note, however, that several other resources are available to patients with ALS and their families. To help PALS and family members address and reconcile spiritual matters, The ALS Association, St. Louis Regional Chapter, has pastoral care support available. Additionally, as ALS progresses, many PALS qualify for hospice services. Hospice provides an encompassing package of care to both the patient and the family. In addition to pain management and end of life care, the hospice team includes a chaplain and social worker who can provide emotional and spiritual support to both the PALS and the family members. Many hospice teams also include a bereavement specialist who can work with children on anticipatory grief issues. The Chapter also has an anticipatory bereavement program for children. ALSA’s bereavement coordinator can utilize interactive art activities, play therapies, and age- appropriate books to help children recognize the variety of feelings they may be experiencing while dealing with a loved one’s ALS. By acknowledging and normalizing these emotions, children can process their reactions to the day-to-day realities of living with a loved one with ALS as well as prepare for the eventual death of this person. To better serve families who do not have access to bereavement services, the Chapter also offers multi-tiered bereavement services for the grieving family. This 13- month bereavement follow-up program includes educational mailings; periodic phone calls; the opportunity for home visits to help with the grief process; this “Loss & Grief” book of educational materials and resource lists; and an annual Memorial Luncheon and Candlelighting Ceremony. Please contact your family’s Patient Services Coordinator or the Chapter bereavement program coordinator for additional support and resources. PALS LOSS & GRIEF: Information to help you understand and cope with your diagnosis of ALS and end of life issues “Grieve and mourn for yourself, not once or twice, but again and again. Grieving is a great catharsis and comfort and a way of keeping yourself composed.” ~Morrie Schwartz Where There’s Loss, There’s Grief Turning the losses of neuromuscular disease into growth by Carol Sowell Neuromuscular disease by its very nature loss can bring gain - a new way to see involved. For others, the emotions are means loss. yourself and your place powerful and sometimes surprising. in the world. As muscle tissue If you feel you may be “stuck” or degenerates, whether Grieving: Why And burdened with an unproductive degree of quickly or over How unacknowledged grief, or emotions that decades, people won’t let you go, some of the following undergo a series of Why do mental health suggestions may help. physical losses. These experts believe it’s may include strength necessary to grieve each Admit That You Are and balance, the significant loss in life? Experiencing Loss ability to walk, 1 manual ability, Libby Coker, a senior In neuromuscular diseases, people know breathing without social worker at they’ll lose some abilities. But knowing mechanical help and Methodist Hospital in ahead of time doesn’t protect you from more. Houston who works with feelings of grief when the loss occurs. the MDA clinic there, says the first reason You may also have lifestyle losses: is “to acknowledge what that loss meant to Rather than anticipate their loss, some reduced work hours, an inability to live you or what that functional level meant to people indulge in denial - believing that alone, a need for more help with daily you, what that job meant to you, what their case will be different, that it won’t care. Disability can bring interpersonal your health meant to you.” progress as rapidly as with others, losses as relationships end or caregiving ignoring signs that their abilities are parents’ age and die. For each individual, In Letting Go, the late Morrie Schwartz changing. the losses caused by a progressive writes, “I see mourning as a way of paying neuromuscular disease can be very respect to life.” Coker says, “Once you break through that specific: from the move out of a beloved denial and the shock and you start home to having to stop driving, give up Second, when people resist grief by trying accepting it, it doesn’t mean it’s not golf or lay down your guitar.