Elizebeth Kubler Ross devoted her life to the care of the dying. She lived an hour away from the institution where she spent her day and commuted to her home in her private car. Realizing the loss of time she moved closer to her place of work and soon realized that she was suffering from emotional exhaustion. Moving back to her original home seemed to help. During her commute while crossing a busy street she had a realization. She noticed that on crossing that street, her mental and emotional state changed from a care giver to a householder. Clearly, the time and distance from work allowed her to reconnect with herself and her life outside of work.

The emotional exhaustion faced by Ms. Ross is also known as Compassion Fatigue. Compassion fatigue is the frustration you may feel taking care of a loved one with Dementia. Wikipedia says, ‘Compassion fatigue, also known as secondary traumatic stress (STS), is a condition characterized by a gradual lessening of compassion over time. It is common among individuals that work directly with trauma victims such as, therapists (paid and unpaid), nurses, teachers, psychologists, police officers, paramedics, animal welfare workers, health unit coordinators and anyone who helps out others, especially family members, relatives, and other informal caregivers of patients suffering from a chronic illness. It was first diagnosed in nurses in the 1950s.’

Sadly, in this process the caregiver starts overlooking their own health and their personal needs. They feel more and more impatient and find themselves feeling angry, guilty and often helpless. They may feel that their empathy and compassion is wearing off with their tolerance going down.

To work as a care giver, one has to recognize the needs of person being cared for and empathize with that person. This is essential for effective care giving. Love and empathy are positive emotions but in can be difficult to bring those emotions into play if one is emotionally drained.

While Ms. Ross found a way of separating herself from the situation, the same is not available to most caregivers in a typical household with a person with a severe chronic ailment, dementia, or more. Recognizing compassion fatigue is the first step in trying to find relief.

As a caregiver, one needs to be able to take out time for oneself. To be able to care for another, it is essential to take care of one’s own self, both emotionally and physically. Taking out time to eat right, exercise, socialize and do leisure activities is very important.

Why is there increasing dependence on sole caregivers?

Two cogent changes are happening in our society simultaneously. One change is the increase in the length of our life and thus period of life during which we are dependent. The second is the decay in the traditional joint family system that puts the onus of care on isolated members of the family (usually the daughter or daughter-in-law).  Caregivers, in most cases, are the immediate family members of the elderly who are often unprepared to shoulder this burden of an ailing patient at home.

Despite of these changes, in most situations, care is given without any outside support or respite care. The caregiver is often also a mother, a father, a wife, a husband. The caregiver often also has a job and financial responsibilities. In some families, one has to give up their job to assume the role of a caregiver, thereby increasing the financial burdens. Eventually, the caregiver is burdened with increased responsibilities that they were often unprepared for

Negative Impact on Caregivers, Compassion Fatigue and Burnout

Caregivers who reported experiencing compassion fatigue, expressed such feelings as, “I frequently dissociated and felt that I walked around in an altered state. I didn’t realize that I had been in a grey space all year.” and “It got to the point where I would feel physically sick before the appointment and would start feeling nauseous.” Others described that they picked up their dependent’s symptoms and explained that they had “tightness in the exact same spot” as the dependent and often continued to carry the sensation sometimes for days.

Abundant data is present in literature showing that caregivers suffer from panoply of adverse effects that include depression, isolation, obesity etc. that harm the mental and physical health of the caregiver. Evidences of chronic stress in the form of elevated cortisol levels and lowered immunity have also been demonstrated. In a recent report in the Gerontologist ’17 Drs. Dassel, Carr, and Vitaliano have shown that caretakers suffer from a higher incidence of dementia.

The chronic stress associated with care-giving is associated with an adverse impact on various domains of cognition including immediate, delayed and working memory. Other aspects of mental health i.e. psychomotor responsiveness and emotional responses have all been shown to be adversely effected. Older individuals have compromised physiological ability to deal with chronic stress effectively. The lack of sleep, social isolation, the lack of positive feedback, and no entertainment or relief, are all contributing factors.

Unfortunately, the helpers’ symptoms frequently go unnoticed. The psychological symptoms range from issues such as dissociation, anger, anxiety, sleep disturbances, nightmares, to feeling powerless. They may also experience physical symptoms such as nausea, headaches, general constriction, bodily temperature changes, dizziness, fainting spells, and impaired hearing. All are important warning signals for the caregiver that need to be addressed or otherwise might lead to health issues and burnout.

Respite Care as a Solution

While the need for support in the field of elder care is obvious and the finding that the people involved with elder care are also at risk makes the need of support even more urgent. 

In the western countries the care of the elderly is often relegated to ‘nursing home’ care where care is given by workers who may not be emotionally invested in the individual. That is why many believe that care is best given in a home environment by the family.

So, how do we protect our family from the adverse emotional, social and health effects of caregiving?

Respite care is the answer, especially in instances where the primary care giver is nearing physical and emotional exhaustion. The family is best supported by relieving the stress of care by periods of relief which we call ‘respite care’. Allowing a hired specialist to take care of the elderly from time to time can help provide a sense of relief to the primary caregiver.

For example, many individuals with dementia require full time help for their basic day to day tasks such as bathing, dressing, bathroom visits etc. which can be taken care of by a nurse or attendant. However, a caregiver goes beyond these basic tasks and looks out for the overall well-being of the person.

Many respite care services, like Samvedna Senior Care, provide uniquely qualified care specialists who are able to provide meaningful and purposeful engagement. The additional benefit of hiring specialists is that they have been trained on recognized techniques of mental stimulation that are known to slow the progress of Dementia as much as possible.

Such services allow the elderly to live at home in a caring environment. Creating this essential support system of care ensures that we are doing the best we can not only for the elderly, but also for the caregivers who are dedicating themselves to this noble task. Enabling the elderly to live their life in their own home is the best gift that can be given to them in the last years of their life.