The loss of a relative with dementia has certain distinctive qualities. Typically, their care will touch the lives of the spouse and adult children. From what we know, it is often the spouse who experiences grief during the process of caregiving as well as after bereavement. Adult children tend to feel worn down by the often protracted time and the emotions that accompany caregiving. When death finally arrives the primary caregiver is frequently left with mixed emotions. Adult children may initially feel relief but regret and guilt may follow. Relief and grief, guilt and regret, are recurring themes when considering how people cope with the death of a loved one who has Alzheimer’s disease.
Caregiving takes up a lot of time. Initially, it may involve a few personal sacrifices but ultimately it can, and frequently does, become all-consuming. The death of a loved one represents a sometimes difficult mixture of liberation and the need for readjustment. Some people find readjustment quite difficult. In one study, for example, around 20 percent of 217 bereaved caregivers experienced grief and depression 15 weeks after the death. But, within 6-12 months the rates fell dramatically. Yet other studies have reported high levels of depression in caregivers up to four years after the death of a loved one with dementia.
I began this Sharepost by suggesting there are certain distinctive qualities associated with the death of a relative with Alzheimer’s. The first of these issues relates to the anticipation of death. Many caregivers describe actual grief during the process of caregiving. This form of chronic sorrow relates to loss of opportunities, loss of intimacy, and the loss of roles the person may once have performed. This can lead to depression prior to death which then continues long afterwards. Grief and depression are different. There is some evidence that grieving prior to bereavement actually helps to lighten the extent of grief afterwards.
A variety of factors seem to have a bearing on the risk a caregiver has of coping poorly with bereavement. The severity of dementia and the level of caregiver satisfaction is one example. Dissatisfaction with the support of others, or standards of care, is another. More intimate and personal factors include the inability to say goodbye, or struggling to recall positive memories. Following bereavement, relatives are ultimately left in the position of dusting themselves off and recommencing their lives. Many caregivers, especially the spouse who is often the primary caregiver, find this process something of a strain. For years they have invested their time and energies into caregiving. The strain partly comes about through sudden lack of purpose and partly from a realization they start afresh, often as older people themselves and from a position of widowhood.
The higher the personal investment in caregiving the greater the cost to the caregiver seems to follow. Intense levels of care also seem bring about a number of conflicting emotions. The love and desire to provide care is sometimes offset by fatigue, impatience and irritation. Even the most dedicated caregiver has moments when they reflect on their own losses. These mixed emotions can stay with the caregiver and lead to a sense of guilt that their care could sometimes have been better than it actually was. Taken together we see a situation where one set of stresses and strains can quickly be replaced or re-cast in such a way that the caregiver themselves becomes ill.
I’ve written previously about the very great importance of caregivers looking after themselves. If social networks are not maintained and structures for support not put in place, bereavement may well leave the caregiver with a crisis of identity and a burden of guilt and depression.