Prior to finding a wonderful online support group of children caring for their elderly parents and the stress involved in doing such. I felt alone. Coupled with caring for a mother with Malignant Narcissistic Personality Disorder, I felt even more alone and as if I was drowning. In the year since mother moved in, I have forgotten how to smile, or enjoy life. The demands and stress were overwhelming and my psychological, emotional and physical health has declined. Others in this group experience the same thing on a daily basis. This online forum, gives us a place to cry, vent and not feel alone, in that we are finding a way to heal. This has led me to wonder what toll does care giving take on a person, and does caring for an abusive parent increase the risk.
While looking for answers I discovered there is a name for what many of us experience. It is called Caregiver Burden. Caregiver Burden is defined as “the physical, emotional and financial cost of providing care” (Karlikaya, Yukse, Varlibas, & Tireli, 2005). It is important to note the most caregivers experiencing caregiver burden do not seek help for themselves even when it is needed. Informal caregivers, who are caregivers not paid to provide caregivers are often referred to as “the hidden or secondary patients” (Doval Mezey & Berkman, 2001).
Caregiver burnout is more extreme than caregiver burden. Caregiver burnout is described as “a state of physical, emotional and mental exhaustion that may be accompanied by a change in attitude from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or do more than they are able either physically or financially. Caregivers who are “burned out” may experience fatigue, stress, anxiety and depression. Many caregivers also feel guilty if they spend time on themselves rather than the elder (WebMD, n.d.). (UH-OH, this sounds like me)
Factors, influencing the level of caregiver burden and burnout include socio-economic status, the current and past relationship between the caregiver and the elder, and the composition and health problems of the elder. “Primary stressors include the functional and behavioral deficits of the elder, and the frequency and unrelenting nature of the care demands” (Doval Mezey & Berkman, 2001). Thus, it appears that the elder’s temperament and demands as well as past relationship with the elder weights on the level of burden the caregiver experiences. In my life, the verbal abuse of the elder, along with the demands and isolation created for caring for a person who is so unruly we can not have friends over or take her out have created a huge amount of burden.
Furthermore caregivers who are faced with providing care for a person who is cognitively or mentally impaired and exhibit disruptive or unpredictable behaviors are likely to experience depression, anger, increased anxiety, hostility, fatigue, grief, and social relationship strain. During my research I found the caregivers who experience low or irritable mood, feelings of worthlessness, self-reproach or excessive guilt, attempted suicide or thoughts of such, motor retardation, agitation, disturbed sleep, fatigue, loss of energy, lost of interest in activities usually enjoyed, change in appetite, and problems concentrating or thinking for more than two weeks may be experiencing the depression end of caregiver burden (Doval Mezey & Berkman, 2001).
Based on this information, I was able to pinpoint several symptoms I am experiencing. (Suicidal thoughts are attempts are not ones I have experienced). Thus I decided to seek answers to determine the level of depression I may be experiencing. I used the Center for Epidemiological Studies Depression Scale and after answering the questions honestly I am disturbed by the findings. Anything over a score of 21 indicates the possibility of major depression. I scored a 48. I took two other similar tests on the same site and got similar results. I will be contacting my doctor tomorrow regarding this disturbing finding. (Center for Epidemiologic Studies, n.d.). Next I found an assessment to determine if I was suffering from caregiver burnout, and found that I am experiencing a high level of distress and should see a doctor. This test can be found here (American Medical Association, n.d.).
A link to the tests is provided with the references for anyone else wishing to take the preliminary test. I believe it is important to note that test is preliminary and should not be use in place of a proper diagnosis by a trained professional.
So what are some factors that contribute to burn out? Unrealisitc expectations are one factor. This is where the caregiver believes their caretaking will have a positive effect on the health and happiness of the person they are providing care for. Lack of control is another. This is when the caregiver feels they lack the finances, resources and skills to provide care. Unreasonable demands are another. Many caregivers put unreasonable demands upon themselves and the elder can contribute to the demands (WebMD, n.d.). This describes what I am going through perfectly. I believe I may be lucky in discovering this information because may caregivers do not realize they are suffering from burnout and will get to a point where they can not effectively function on a daily basis (WebMD).
With all this said, I wonder what the effects are of caregiver burden and burnout besides depression. Will it effect long term health and so forth. Research studies thankfully exist to answer these questions.
One study of 24 primary caregivers and 31 non-caregivers of similar age, education and gender but the similarities ended with that. Caregivers showed a significant increase in morbidity. Caregivers had higher incidences of illnesses, such as, high blood pressure and more acute health conditions. 69% of the differences between caregivers and non-caregivers were their total illness score. In other words caregivers had more illnesses and severe daily hassles associated with being a caregiver. Furthermore, caregivers reported more psycho-social problems, psychological distress, and inadequate social attachments. These results provide evidence that providing primary care increases the risk to the caregiver’s physical and psychological health. “Elevated blood pressure was a particularly salient feature for caregivers” (Willis & Gottlieb, n.d.).
Due to my mothers early signs of dementia, mental illness and narcissistic personality I wondered if this contributed to the problem. The burden of care giving for mentally ill people was first introduced in 1963 by Grad and Sainbury. Today’s medical community accept that care giving to a mentally ill person or one with dementia can be a “source of potent and chronic stress and can cause deleterious consequences for both the physical and mental health of caregivers” (Karlikaya et al., 2005).
Research shows that caregivers of demented patients are nearly twice as likely as caregivers of non-demented patients to have symptoms of depression. Also, the spouse or adult child who is the caregiver often has an emotional burden that makes the risks even higher (Karlikaya et al., 2005).
This information is very disturbing since I have felt for some time I was suffering some depression. Now, I wonder if I am suffering from burnout and as a result severe depression. As I mentioned earlier I am calling the doctor in the morning to discuss the possibility. While at the same time it angers me even more to know that effect this woman is having on my entire life with little or no thought on her part.
References
Caitlin…
this is why i always pick my nose….