Life After Caregiving: The Beginning In the End

Loss of a loved one especially after an extended period of caregiving can result in complicated expressions of grief.  Dr. V. Sridhar, consultant psychiatrist, Dementia Care and Nirupama Natarajan, Psychologist from SCARF (DEMCARES), Chennai talk about a caregiver's grief and the healthy ways to grieve.

At some point in our lives, we are expected to undergo the loss of a loved one, while at other times we extend support to our friends and relatives who have experienced a loss. Irrespective of the circumstances surrounding the loss, the death of a loved one will always be difficult and devastating. Bereavement is used to refer to the period of mourning following a loss, especially after the loss of a loved one. It is often accompanied by a state of intense grief, a natural response to the loss. After the death of a loved one, the survivor may grieve in different ways and there is no prescribed way to grieve. Contrary to the popular belief, grief is not a single feeling but a combination of many emotions that could occur at once or in succession which have to run their course.

Different Expressions of Grief

Grief finds expression in different dimensions of a person’s life. One may not be able to feel anything or be overwhelmed by the occurrence of several feelings at once, experience bodily symptoms as a response to grief, feel that their behaviors or thoughts have changed or give expression to grief by questioning their spirituality and connection to God. Aches, pains, fatigue, digestive problems, loss of appetite and difficulty sleeping are some the physical expressions of grief while increased irritability, anxiety, preoccupation with loss, frustration, anger and guilt are some of the emotional expressions of grief. Grief can also be expressed socially through detachment from others, isolation, and avoiding social contact. Spiritual expression of grief often leads to the questioning of the purpose of life, the meaning of loss and suffering, and the reason for your loss.

However, a person’s grieving process may be influenced by how they view death, their relationship with the loved one and the circumstance of the death. For instance, if the person has passed after a chronic illness such as dementia, the loss might have been anticipated. The passing away of the loved one after prolonged suffering may even lead to feelings of relief. On one hand, a caregiver may feel relieved due to the end to the suffering of their dear one and on the other, feel relieved from the stress and burdens of caregiving. At the same time, they may also experience a sense of loss, a lack of purpose and sometimes guilt, especially for feeling relieved from the responsibilities of providing care.

Effect of Loss on a Caregiver

A caregiver is someone whose role we know least about and it is often not noticed how much the loved one’s passing affects them. Caregivers are often distressed by feelings of relief as it can lead to feelings of guilt. Right when the caregiver feels relief, it can be disturbed by flares of guilt for feeling relieved following the death of a loved one. Relief is not something that is openly talked about by caregivers, sometimes due to the fear of being misunderstood, sometimes because one does not feel it is acceptable and at others for the fear of guilt. Often, caregivers of persons with chronic illness feel an unpleasant, conflicting mixture of feelings when caregiving ends. These feelings can complicate the reaction to loss, prolong grief and delay adjustment to life.

Relief is normal. Schulz et al., in 2003, assessed the responses of the caregivers of persons with dementia after their loss. This study reported that 90% of the caregivers believed that the death was a relief to the person with dementia and 72% of the caregivers felt relieved themselves. It is important for the caregiver to accept of the occurrence of contradictory feelings when caregiving ends. It is normal to have some unpleasant feelings about being the caregiver and caregiving such as stress, burden and relief for oneself. However, it should be noted that it is not the same as having unpleasant feelings toward the person who was cared for. When a caregiver feels of relief when caregiving ends, it does not mean that the caregiver feels regret about caregiving. Rather, the caregiver may be relieved to have successfully completed the challenging journey of caregiving with the loved one.

Complex Grief - Symptoms

Grief has been observed to be a complex state with a mixture of different emotions, which could be a significant risk factor for numerous negative outcomes ranging from mortality to problems in physical, psychological and social functioning. Persistent Complex Bereavement Disorder occurs when the symptoms of grief persist for at least 12 months or more after the death of a loved one in bereaved adults and this duration differentiates complex grief from normal grief. If you find yourself having several of these symptoms a year after the loss of a loved one, it is recommended that you reach out to a mental health professional.

The Healthy Way to Grieve

This brings a question of whether there is a healthy way to grieve. There is no prescribed right or wrong way to grieve but there is a healthy way to grieve. Psychologist William Worden had proposed 4 tasks of grieving which the bereaved must accomplish to cope successfully and readjust to their lives.

• Accept the reality of loss. Often, the initial reaction to the loss of a loved one is disbelief. Acceptance of the reality of loss is an important step in coping with the loss.
• Work through pain and grief. As disbelief subsides and the person comes to terms with the reality of loss, he/she is confronted with emerging feelings of sadness, anger, numbness, fear, guilt and even relief. A healthy resolution of the pain and emotions experienced while grieving is essential for healing. It has been well established by research that social support is most effective in helping the grieving resolve their grief. Participation in mourning rituals of one’s culture, religious involvement, community participation, physical activity and involvement in support groups can help in the process of resolving grief and healing.
• Adjust to an environment without the deceased. During this phase, the grieving person gradually starts shifting the focus from grieving to new relationships and other activities. One reconstructing their identities by taking up new roles, relationships, responsibilities and activities.
• Find a connection with the deceased and move on with life. In the last stage, the grieving person is required to work on their relationship with the deceased. One has to find an enduring connection with the loved one who has passed away while re-investing and moving forward in their life. It is essential to rediscover a purpose for our lives and continue to live our lives meaningfully.

Sense of Relief Does Not Mean Lack of Regret 

Caregivers spend a significant amount of their time caring for their loved one and the loss of the loved one they cared for can be particularly difficult. While grieving, a caregiver may experience a mixture of emotions which may even be conflicting in nature. Often, caregivers experience relief post caregiving. It is important to remember that the sense of relief is normal and it does not mean lack of regret. The healthy way to resolve grief is to work through the pain and emotions. A source of significant help through the process of grieving would be social support—from family members, friends and the community. It is equally important for the caregiver to reconstruct their identities by taking up various activities, developing new roles and relationships; find a healthy, enduring connection with the loved one and move forward in their lives when caregiving ends. Moving forward in life post-caregiving does not mean forgetting the loved one or the period of caregiving but rather finding ways to remember the loved one as you find a sense of purpose to begin a new chapter and live a meaningful life.

REFERENCES

Worden, J. W. (2009). Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, Fourth Edition, Springer, N.Y.

Schulz, R., Mendelsohn, A. B., Haley, W. E., Mahoney, D., Allen, R. S., Zhang, S., Belle, S. H. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. New England Journal of Medicine, 349, 1936–1942. doi:10.1056/NEJMsa035373