A Family Dilemma: The Chronic and Terminally Ill Patient

Not every person who suffers from a debilitating, chronic and/or terminal illness is treated with compassion, care, respect or even love. However, there are countless cases that have occurred where, when a member of the family became the primary caregiver along with the help of other family members, and then the patient became subjected to both physical and/or mental abuse by their own family. In those cases, the victim may not be capable of relating or describing the abuse due to a stroke, diabetes, leukemia, or a combination of these and other factors that left them unable to effectively communicate with others.

That said, abuse might be much more than purposeful physical or mental abuse as most understand the definition. Abuse may also come in the form of being singled out and deemed unworthy of another person's time or help due to an illness that is chronic or terminal in and of itself. Whether it is from a lack of compassion or being ignorant of the facts of any given debilitating disease, people can and do shy away from interacting with a patient - even if that patient is a close family member.

In most of these cases, the abuse is unintentional and may be a symptom derived simply from denial of the existence and extent of a chronic or terminal illness. Asking, "Are you really sick" or stating, "You do not look sick" are signs that they have no understanding of what a chronic or terminal illness is. Nor do these normally well-meaning friends and family members have any concept of how it makes the person feel and suggests that they believe the illness is only a form of laziness or an excuse to not work. In fact, many victims of this type of illness have been accused of trying to collect money in place of working and that they are a fraud and a liar.

A patient, who has a chronic or terminal illness, or a combination of both, suffers many of the same levels of emotion found in those suffering from the death of a loved one. These emotions may include anger, sadness, fear, severe depression, extreme loneliness, guilt, and a deeply felt emotional loss of what "once was". Due to their illness, they may not be able to work or to contribute to the family in a meaningful way and start to feel they are more of a burden than an asset. Men, when they realize they are suddenly unable to contribute financially to their family and are no longer an independent, self-reliable person, may be especially devastated by their illness.

A victim of a chronic or terminal illness may discover that their very interaction with friends or family members can rapidly degrade into an almost non-existent home and social environment - overnight. Even family members will find excuses for not being available to call, visit, or help if needed. An intact family, that is trying to deal with a chronic or terminally ill family member, may find they are stranded and virtually adrift without any type of support group when other family members refuse to help or interact with the person who is ill. This happens often, leaving the immediate family or sole caregiver with little knowledge of how to contact other resources. In many of these cases, the caregiver may be the only human contact the patient has other than with his or her doctor and their medical staff. For the rest of the family, it becomes an actual situation where "out of sight, out of mind" relieves them of any feelings of guilt over the neglect shown to the individual who is ill.

Other family members and friends, unable to accept their loved ones' terminal condition may not realize that they treat that person as a virtual pariah - an inconvenience when asked to provide needed help, even if that help is nothing more than a ride to the clinic. Oftentimes, the patient finds they have been relegated to a second-class status and that they have been effectively shut out of the lives of the family and then callously treated or ignored as though nothing is wrong with them. Not being invited to family gatherings, passed over for Sunday visits, or even denied a simple phone call to ask how they are - all proves to the patient that their self-worth has a value of zero.

Caregivers may also suffer from fear, anger, sadness, loneliness, and guilt, especially when the one being taken care of is a close family member. It can worsen if the terminally ill person is a spouse and the caregiver finds him or herself caught in a paradox alternating between love and hate. All these emotions may spill over into extreme anger - lashing out at the patient for what cannot be controlled. The loss of a previously enjoyed life-style, the loss of the emotional closeness and companionship of their spouse, and the knowledge that their loved one is not going to get better but will instead become much worse over time and that both are captives of the illness until death itself ends the care-taking process.

Therefore, it is important for family members (and friends) to consider, not only the physical and mental treatment of a terminally ill family member, but also how your actions and words affect the quality of their life. Finding out about a chronic or terminal illness is bad enough - do not make them feel as though they have died before the actual event. Become as involved as possible and offer your services if they are needed - along with your companionship. Compassion, caring, and unconditional love will be far more appreciated than anything else you can give.

Sources:
Chronic Illness or Disability
Abuse is never justified or deserved, Sue Falkner-Wood, April 2009
Personal Experience
Understanding Psychosocial Adjustment to Chronic Illness and Disability, A Handbook for Evidence-Based Practitioners in Rehabilitation; Authors: Fong Chan, PhD; Elizabeth Da Silva Cardoso, PhD; Julie A. Chronister, PhD; Pub Date: 06/2009