Stages Of Caregiving

Stages of Caregiving[1][2]

Some disabilities have a sudden onset, where as others have an insidious onset and studies show that caregivers cope differently based on a sudden versus a slow onset of disability. In fact the onset of disability is one of the most stressful periods as it involves observing the loss of a loved one’s physical and cognitive ability.

  • Confusion: Before the diagnosis, caregivers are often fraught with stress of not knowing what is actually wrong with their loved one. At this stage there is likely to be constant upheaval owing to uncertainty and the mental trauma of dealing with the issue. The patient is also likely to be stressed and relationship disturbances are likely. Caregivers may constantly struggle to keep their issues personal and feel that others need not be involved in their private hell.

  • Forced acceptance: This stage usually follows a diagnosis. Caregivers may feel relief that knowing what is wrong, but may also feel extremely confused, anguished and traumatised at having to deal with the illness, especially if the prognosis is poor. Feelings of bitterness, anger, anxiety, worry and depression are likely. It is also possible that caregivers will push themselves to find recourse in alternative medicine, soothsayers, et al. Sometimes caregivers experience complete inability to act. Failure of medical professionals to adequately convey the diagnosis is another potential source of confusion. Acceptance and coping also varies by kinship relationships (parent caregiver, vs. Son or daughter caregiver)

  • Perpetual alertness: This is likely to be a prolonged stage, lasting from after the diagnosis till the end of the caregiving relationship. The caregiver is likely to alter her/his life such that it can revolve around the patient. Often characterised by a tendency to not think about one’s own needs and pushing aside even pressing concerns related to themselves. Before this stage, social isolation may have been seen as temporary and even unintentional. But at this stage, often social disapproval and negative experiences may force caregivers to isolate themselves from family members and friends. “Nobody understands”, “This is my life, my problem” may be the predominant feelings. Depression may set in. Many caregivers resort to stress-relieving substances such as alcohol and drugs.

  • “Dealing with death”: Seeing their loved one deplete slowly may render the caregiver helpless and depressed. Often at a loss of words, she/he is likely to experience depression, anxiety, anger and frustration if social support from friends and family is not available.

  • Moving on: Mostly characterised by relief, guilt and feelings of “don’t know what to do with oneself”, caregivers are likely to go through a phase of idleness or heightened activity owing to the need to “move on”.

  • Residual symptoms: Refers to a range of feelings, behaviours and difficulties that can be attributed to long-term caregiving. Caregivers may find themselves to be extremely moody, depressed, angry and even accustomed to seeking stress. Grief may seem bearable, but may in reality, be repressed and surface as lack of motivation and inability to focus. Most caregivers get over this over a period of time, and just a feeling of perpetual loneliness persists.

[1] The feelings described at each of these stages may vary. Atypical symptoms may also be common. To know whether someone is going through caregiver’s stress, just try to identify if there has been a drastic change in her/his lifestyle. Some stages may not be relevant for all caregivers.

[2] These stages are named thus to make them understandable by a wider audience. They may be found under different headings in other literature. However, these are formulated based on interactions with actual caregivers. Not to be confused with Kubler-Ross’s “Stages of Grief”.

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