Crisis of Discovering that your Child has a Terminal Illness
The Expectations from parents
Many parents and their offspring interact in such a way that gradually parent’s dreams and expectations are modified by recognition of their child’s actual capabilities. As the fantasy of the dream child is replaced with day to day living, parents will always hopefully accept the child for what he or she is and wants to be.
Many a times when a child’s health is impaired, parents can be confronted harshly and abruptly with a reality that allows little or no hope for fulfillment of their dreams. The highly fantasized child is lost and a process of grieving starts. Most parents do feel genuine sorrow for the child whose health is impaired, but, parallel to that, parents grieve for themselves in their state of loss.
Parents are usually much aware that something somewhere is not normal with their child, but after many doctor appointments and many specialists, still come up with no definite diagnosis.
However, it may take years to finally get an accurate diagnosis for a child with Batten Disease. Parents, by this time, start fearing for the worst case scenario. A multitude of different events and questions have entered their minds and they just want answers (Kalter, Lohnes & Saldinger, 1999).
What should a child be told or not be told? As has often been the case, the child is however neglected when faced with a life-threatening illness. Much of the time and energy of the health care deliverer is mostly spent in helping the parents on coping with the psychological upheaval of tending to a terminally ill child. Although it is necessary to understand the problems of the parents, it is very cruel to overlook the needs of the child.
Most Parents will very much struggle with the question of whether or not to tell their child he or she is dying. Talking with your child about the possibility of his or her own death can be heartbreaking and the sense of helplessness it brings can be overwhelming to the parents.
They will often believe their children are much too young to comprehend what dying really means, or even worry that a child will react with fear and confusion, and that their own sadness will overwhelm the child. Therefore, given these concerns and issues, it is understandable that you may find yourself avoiding the opportunity to talk openly with a child who is facing death (The compassionate friends, 2010.
Denial is never the correct way of approaching this. Avoidance is not the way neither. Dropping the bomb is also not the way to go about it, but honesty is the way. Life is not always that fair, but BDSRA and your Doctors are here for you.
Maintaining that hope
You could always set realistic goals regarding what may be expected from and what can be done without giving up on your child. It can however be extremely difficult for families to shift their focus from curing their child’s disease to comforting them in their illness (Hausmann, Versenyi & Westaby, 2005).
Yet honestly accepting that your child may die is not considered “giving up”. Many parents who have acknowledged hospice care for their children say it gave them the positive support they desperately need to help focus on quality time, comfort, and peace for their child.
Parents sometimes worry much about how to respond when the dying child talks about his or her dreams for the future. It is always okay for one and their child to talk in a positive way about the future, even while one is also having honest conversations about the seriousness of their child’s condition. Even during a terminal illness, it is always possible and very important for parents to acknowledge and affirm their children’s hopes.
The conversations that you have with your child about the illness should always be part of an ongoing process of communication. Parents and children together can share and review information and gently reach out on an understanding of the seriousness of the child’s illness.
Some of very courageous parents feel comfortable having these conversations on their own with their child. Others however enlist the participation of members of the child’s health care team, local clergy, or other family members (Cicirelli, 1997).
Initial conversations with one’s child may however not always include an actual discussion about their actual death. They could also, for example, focus instead on nature and the cycle of life. However, these early discussions may be or will be an invaluable stepping stone for more in-depth conversations later on.
One’s child may never actually directly ask him/her questions pertaining to illness and death directly. However, it is most likely that one’s child could be wondering about at least some of these issues. One may however need to initiate conversations with your child about these concerns so that you can provide much needed reassurance for him or her. Here are some suggestions to help you start these conversations.
Review with one’s child what has happened in the recent days and weeks. Use gentle questions to find out what the child understands; correct any misunderstandings that the child may have as you talk.
The parent should share some new information with the child. Sometimes later, the conversations can relate more directly to the child’s condition. For example, what do you think what might happen if somehow you did not get better.
Many people also wonder about that when they get very sick. Some people even wonder if they are going to die. We know that everyone will die someday, but what we will never know for sure is when a person will die.
Planning ahead
Where do we want to take care for our child? Where would you prefer your child to be as their illness progressed? Where would your child most likely want to be as their illness continues and at the time of death? Would it be in a hospital, at home, or some other setting? Whilst most children and most parents are much more comfortable having their child at home, this is however not the case for everyone.
Most parents would find that many of the decisions which need to be made also need to be refined several times. Therefore, in some circumstances, end of life care at home would not be the best option. But however, one of the most important things when having your child at home during this difficult time is that in most community’s hospice care is available (Herbst-Damm & Kulik, 2005).
The Dying Child
Spirituality Issues
Spirituality in this case is not confined to a belief system or practice of worship. Spiritual issues are life issues like finding meaning in suffering, forgiveness, grace, hope, and love.
When your child enters the dying stages, he or she may feel very alone spiritually. Even though he or she may have led a very active spiritual life, he or she may feel abandoned and forsaken. Whatever his or her religious or spiritual background, facing his or her own death means confronting some of the primary questions of existence such as where do we come from? Where are we going to? And what is our purpose in being?
As your child is facing death, you will however confront your mortality, too. This process could be a very big challenge to your own long-held religious beliefs. But it could also be an opportunity to expand your spiritual nature and to help your child reach peace of mind and soul.
However, facing your own mortality is another profound way to prepare yourself to be fully present for your child. When in that full emotional presence, you can create a dying time that is a time of healing and growth for all concerned (Ditto & Hawkins, 2005).
Taking Care of the Dying Child
Terminal care is however becoming an increasingly accepted practice in the medical community. As a part of the terminal care program, the child’s house is often chosen as the place for continued care, as well as the site for death of the child. This practice has been increasingly instituted with older dying children or even adults and the terminally ill children.
It had been a generally commonly accepted belief that better care and greater control of pain and other symptoms associated with the illness were available in the hospital.
This belief, however, often felt by both the health care professionals and the family, failed to take into account the most important person, who happens to be the child. Children’s feelings are often overlooked, and adults who “know best” make decisions about their well being for them.
What happens after your child’s Death?
After the child’s death, most parents and families would want to spend some time alone with their child. But t this is often easier if you can take time to let the nurses unhook the equipment that the child was using (Joiner, Landreth, Solt & Tew, 2002).
As the parent, you should also feel free to spend time with your child either by yourself, with your partner, or with members of your family if you so desire, so that you could get time to say goodbye and pray. Your child’s body will however be transferred to a funeral home where funeral arrangements will be taking place.
Coping With the Grief
How do we define grief? Grief is defined as an emotional reaction, which encompasses many feelings, such as disbelief, loneliness, fear, anger, guilt, regret, sadness, and despair.
Most people who have ever experienced a death in the family suffer the emotions of grief, but bereaved parents probably experience grief the most severely. The death of one’s own child may be the most devastating and intense loss a person would ever experience.
The absolute finality of death creates a kind of loss that is unlike any other feeling. This loss could be the most profound experience of life and also the most painful feeling that you could ever experience. Grief, as the expression of that pain, is however a part of a healing process enabling us to survive loss and to continue to function in the world. Grief is mostly an essentially a private experience.
How each of us responds to the death of someone we loved is very uniquely our own personal response. However, the way in which we decide to express that private feeling is influenced by what is acceptable in the larger society. Mourning ceremonies (funerals and memorial services) are therefore models for the culturally accepted form of grieving, setting the tone and defining the manner of our expression.
When the funeral or memorial service is over, grief is often just the beginning. The disorienting feelings that arise in bereavement can become quite intense and last for a very long time.
If unexpressed and unresolved, they could however lead to serious emotional difficulties resulting in self-destructive behavior or an impaired ability to function. Therefore, it is important to acknowledge bereavement, to experience and resolve grief, and eventually to find a way through the pain (Rosenfeld, 2000).
Indicators showing Unresolved Grief
Not functioning well is a major sign of acute grief. During this phase people experience major disruptions of their usual mental processes; major lapses in thought processes, extremes of denial, even hallucinations are more often the rule than the exception. Given the extreme stress of losing a loving child, acute grief may last for very many months.
Timing, then, is also a critical part of assessing whether you or someone you love is experiencing unresolved grief. You should however be very sure that acute grief, with its hellish unpredictability’s of feeling, has begun to subside, that what you are looking at are recurrent, pervasive states. Your Personal style will determine how you look at symptoms.
What is extreme and characteristic behavior for one can be well within the limits of normalcy for another person. Social and cultural context and how people of your ethnic and religious background generally react, also shapes our determinations of normal and appropriate behavior.
With these signs in mind, we can look at behaviors that may be indicative of unresolved grief, wooden and formal behavior that masks intense feelings of anger, Development of physical symptoms that your child experienced in illness and furious hostility towards specific persons connected with your child’s death. Chronic guilty conscience and lowered self-esteem.
A feeling that the loss took place yesterday, even though it occurred months or years ago and Loss of patterns of social interaction, interruption of friendships and formerly valued social activities.
Searching that continues over time, with a great time of apparently purposeless behavior, restlessness, moving around, Panic attacks, physical expressions of fear such as shortness of breath and choking sensations and also avoidance of customary mourning rituals (funerals, visits to the grave, etc).
Many of these symptoms occur during the phase of acute grief. If one or more of these persist for more than six months past acute grief, with no signs of change or improvement, then you may be looking at unresolved grief. The “signs of change or improvement” is a very important part of your assessment.
People however heal in their own ways, on their own timetables. The rate of change is not so important since you can be moving very slowly, but as long as you see indicators that you are moving, then you can trust your own process. When you see no movement when, your life has stopped then you have cause for concern (Amato et al, 2002).
Emotional Support
Men in society are thought of as the Rock of Gibraltar, to keep a stiff upper lip, and to take it like a man. It is very easy to fall into that trap; to be detached by burying one’s self in research, online bulletin boards, and bill payments. Some may even joke around that they are the family’s chauffeur and porter. The reality is that a father provides the important emotional support not only to his kids but also to his wife.
It is never easy Feldman, 2008). Men are supposed to be able to fix things, make them all better and all. We even get frustrated and angry because we cannot make this condition better. Batten Disease is never something that is just going to get cured and then everything will be okay. You, and your family, will sometimes have good days and bad days.
Maybe a lot of them in a row, but if you are wallowing in your own pity and remorse, you cannot never provide support to your family. How can we get over this hump? How can we get over our own emotional crisis so we can support our family? The answer is not always a good one.
Men will struggle with this issue all the time. But the best coping strategy is to keep focused on what is important, the health and happiness of the family, not on what you think could have or should have been. You would like to think you are in progress but life continues to change and you must too. In the end, your effectiveness as a father will come to be for the others to judge.
References
Amato, R. et al (2002). A pilot study of the effects of expressive writing on psychological and behavioral adjustment in patients enrolled in a phase II trial of vaccine therapy for metastatic renal cell carcinoma. Health Psychology, 21(6), 615-619.
Cicirelli, V. G. (1997). Relationship of psychosocial and background variables to older adults’ end-of-life decisions. Psychology and Aging, 12(1), 72-83.
Ditto, P. H. & Hawkins, N. A. (2005). Advance directives and cancer decision making near the end of life. Health Psychology, 24(4), 563-570.
Feldman, R. S. (2008). Development across the life span (5th ed.). Upper Saddle River, NJ: Pearson Prentice Hall.
Hausmann, R. C., Versenyi, A. V. & Westaby, J. D. (2005). Intentions to work during terminal illness: an exploratory study of antecedent conditions. Journal of Applied Psychology, 90(6), 1297-1305.
Herbst-Damm, K. L., & Kulik, J. A. (2005). Volunteer support, marital status, and the survival times of terminally ill patients. Health Psychology, 24(2), 225-229.
Joiner, K. D., Landreth, G. L., Solt, M. D., & Tew, K. (2002). Filial therapy with parents of chronically ill children. International Journal of Play Therapy, 11(1), 79-100.
Kalter, A., Lohnes, N., K. & Saldinger, A. (1999). Anticipating parental death in families with young children. American Journal of Orthopsychiatry, 69(1), 39-48.
Rosenfeld, B. (2000). Assisted suicide, depression, and the right to die. Psychology, Public Policy, and Law, 6(2), 467-488.
The compassionate friends, 2010. When our child has died from a terminal illness. The compassionate friends. Retrieved from https://www.tcf.org.uk/