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I would find it hurtful if my neighbor referred to my child as “mentally retarded.” I would also be upset by the fact that they spoke without any insight into our home situation. I would immediately correct and inform them that their comments were inappropriate and hurtful. I would then explain to my son that raising him was not difficult; instead, I wholeheartedly enjoyed it. For him, it would also be a lesson on standing up for himself.
Chronic illnesses affect families in multiple ways, including emotional, physical, and financial impacts. For the parents of a child diagnosed with such a condition, it can lead to anger, worry, denial, and general dejection (Marini & Stebnicki, 2012). Research shows that such a prognosis can tear strain marriages and tear apart couples to the point of divorce. Additionally, from a physical aspect, they might experience loss of sleep and appetite.
They can overcome this by speaking to a mental wellness expert to help them deal with the psychological and physical manifestation of their emotions. However, some deal with the change in less healthy ways such as blaming each other, drinking, neglecting their loved ones, and withdrawing to themselves. It is best to find beneficial coping mechanisms to adapt to the changes. Finally, the diagnosis can be concerning because of its financial implications, especially to a less privileged household. The caregivers can seek financial support from other relatives, friends, or well-wishers on platforms such as GoFundMe.
People have significant societal and cultural expectations for parents with chronically ill young ones. For instance, it is presumed that they work less and spend more time at home. The society also thinks their lives to revolve around nurturing. The public condemns parents who try to find time for other activities, especially leisure. These standards are applied to mothers more than fathers, which indicates that society still views women as the parent that should take on the bigger share of domestic labor and rearing.
The demands are notably greater for guardians with a dependent whose condition is disabling versus those whose child does not have a significant disability. For instance, the caregivers of a patient with cystic fibrosis face higher societal expectations than those whose offspring has asthma. Aside from sympathy and perhaps empathy, families with a chronically ill member tend not to receive a lot of support from their communities. In addition to caring for a chronically ill child, such parents also face many societal expectations.
Health providers should build collaborative and productive working relationships with families. They can encourage guardians to create a program that allows them to combine work with their domestic responsibilities. For instance, they can organize their schedules so that when one parent is working, the other is free to watch over the sick. Medical professionals should also urge the patient and their siblings to be engaged in providing for the former as this relieves the burden on the primary custodians and alleviates chronic fatigue syndrome (Blazquez & Alegre, 2013). Additionally, involving the child in their own treatment teaches them to be autonomous and gives them an opportunity for growth.
Ultimately, the goal of caregiving is to empower the recipient towards choice and independence. It is critical that everybody regularly takes a break from tending to the sick and finds a balance between nursing a loved one and other activities.
References
Blazquez, A., & Alegre, J. (2013). Family and partner facing a chronic disease: Chronic fatigue syndrome. The American Journal of Family Therapy, 41(1), 46-62. Web.
Marini, I., & Stebnicki, M.A. (2012). The psychological and social impact of illness and disability. (6th ed.). Springer Publishing Company.
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