Terminal and Potentially Terminal Illnesses in the Family

According to the American Cancer Society’s Cancer Facts and Figures for 2009, over 36,000 people in Massachusetts were diagnosed with cancer, and over 1.4 million were diagnosed across the United States. According to a 2006 study, 80 million people in the US are diagnosed with cardiovascular disease, and 864,500 die each year from this disease. In 2007, it was estimated that 14, 561 died from AIDS, and it is estimated that 280 people die of Parkinson’s Disease each week in the US.
These are just a few examples of the many diseases that are terminal or potentially terminal for all those we are diagnosed each year – and those numbers are somewhat disheartening. There are a variety of illnesses that cause families to have to deal with a terminal or potentially terminal prognosis, often a diagnosis that comes suddenly and unexpectedly. Due to the nature of these types of illnesses, they prove to be another example of sicknesses that come with extra stressors and difficulties for families to try and cope with.
One of these stressors is the complexity of trying to explain your illness to your family members. For children, they often ask question regarding why their parent or sibling got sick, if it is contagious, and if they are going to die? Often with younger children especially, their egocentrism at their age can lead them to think that the illness in their family is somehow their fault. And while this is a prevalent feeling among kids, even those in their fifties with dying parents have said they feel responsible. Therefore, it is crucial to reinforce continuously for kids, in to their adulthood, that terminal illness like cancer are no one’s fault! As of the last question, children are always going to ask what is going to happen to their relative, and while it may seem impossible, it is suggested to be honest and realistic with kids when you answer, because they will see through any fake optimism and only become more confused. Another huge issue when a parent becomes ill like this is the time and physical demand of the new treatment suddenly required in their already busy lives. One journal article says,
“Parenting demands a commitment to caring for others. However, the urgency of self-care demanded by life-threatening and debilitating conditions means that parents’ own requirements may have to be given priority over the needs of their children. Although many parents find a way of resolving this that feels satisfying to them, our experience suggests that many feel as though they are face with a seemingly irreconcilable choice of whether to response as parents or as patients.”
This is the unique situations of parents who become terminally or potentially terminally ill. Children who fall are already in a “need of care” place in their life, while parents who fall ill are in a “care-giving” point in life. Therefore, they struggle greatly over how to balance their own care with their childcare responsibilities.
Especially important is that terminal or potentially terminal diseases bring about a unique set of emotions and reactions to the diagnosis and treatment process. Family members must deal with trying to sort out their own feelings while still showing love and support to the member who has fallen sick. Looking at families with children with terminal illnesses, it is suggested that the ill child is encouraged always to express their feelings and emotions regarding their condition. In terminal cases, families often struggle with communication. No one wants to disrupt the equilibrium and show or say how they are feeling in fear of upsetting someone else, especially the one who is sick. However, a lack of communication is only harmful to the entire family unit, as it can create distance and isolation among members at a time when they should be striving to become closer and more solid in order to support one another through this process. As a result, even parents are encouraged to share with their children how they are feeling about the potential or imminent death of their child, because as hard as it may seem, being open with one another’s feelings is the best way to foster emotional healing and strengthen the family unit. Additionally, both the ill person and their family confront and daunting and uncomfortable sense of a complete lack of control and powerlessness. This can become extremely discouraging and defeating. As a result, families are also suggested to focus their energy on the here and now, and on creating happy memories and moments for the family to share.
In sum, terminal illnesses illicit an entirely different set of emotional reactions and coping mechanisms for family members because it includes the extra element of grieving. Grieving is a long and continuous process, and can take an enormous told on the emotional health of the family. While everyone copes and handles this type of news in his or her own individual way, there is a rather typical path of emotions that many people go through. It is suggested that people understand what these characteristic emotions are because it can help the ill member, the family, and friends to cope with the many foreign things they are feeling. There are four basic ones including:
• Shock and Disbelief
• Denial
• Anger and Grief
• Fear
The last emotion has several societal implications in that, as we have discussed in class, society tends to ignore the concept of death. People do not talk about it frequently, and therefore a natural and inevitable process has become an uncomfortable topic in our culture. This creates an even higher level of fear surrounding death. While terminal illness is not a natural way of dying, if our society was more comfortable with the topic overall, families would also be more willing to talk about their fears and issues regarding the potential death, and that would create a greater sense of camaraderie and support.
In sum, terminal and potentially terminal illnesses are unfortunately not uncommon, and they have the power to significantly shake the family unit. These types of illness come with an entirely different set of emotions surrounding grief that both the ill person and their family must learn to cope with, while also prompting several challenges regarding time management between care-giving and care-receiving.
Here is a link to a forum for people dealing with care giving and terminal illness. I thought this short conversation was really deep, and gave examples from real people of the many emotions that come along with terminal illnesss. If you want to read other conversations among people in these situations, you can viist the larger forum at (http://www.beyondindigo.com/forums/view_forum.php?id=20).

http://www.beyondindigo.com/forums/view_topic.php?id=248&forum_id=20

There is also a link to a Newsweek video here that tells the story of a few parents who were diagnosed with cancer while trying to raise their children. It focuses also on a program called PAACT at MGH here in Boston and how it helps families in these situations.

http://video.newsweek.com/#?t=1213998771&l=1377894848


For reflection:
1) What do you think about the added stresses of dealing with a terminal illness in the family?
2) Do you have any experience with this topic? If so, do you feel the information above is similar to what you dealt with? In what ways?
3) Do you feel the list of grieving emotions is accurate? Do you feel it is too general? Why or why not?
4) How do you think society encourages or discourages families who are trying to cope with terminal/potentially terminal illneses?



Sources

“CDC: Statistics and Surveillance: HIV/AIDS
http://www.cdc.gov/hiv/topics/surveillance/basic.htm

“Facts and Figured about Parkinson’s Disease”
http://www.associatedcontent.com/article/359115/facts_and_figures_about_parkinsons.html?cat=47

“Heart Disease and Stroke Statistics”
http://www.americanheart.org/downloadable/heart/1240250946756LS-1982%20Heart%20and%20Stroke%20Update.042009.pdf

“Cancer Facts and Figures 2009”
http://www.cancer.org/downloads/STT/500809web.pdf

Carmchael, Mary. “Whats Chemo, Mommy?”
http://www.newsweek.com/id/43353

“Children Dealing With Terminal Illness”
http://www.a-better-child.org/page/845446

Altschuler, J. and Dale, B. (1999) “On Being an Ill Parent.” Clinical Child Pyschology and Psychiatry. 4(1). 23-37
http://ccp.sagepub.com/cgi/content/abstract/4/1/23