Grief And Bereavement In Alzheimer's Disease Caregivers
Caring for a relative with Alzheimer's disease has
been described as a "funeral that never ends". Caregivers see their loved one
die a little bit each day, until they become a shadow of the person they once
were. Grieving is an ongoing process, and even after the patient dies, grief
still continues. Common feelings at the time of death include feeling depressed,
a yearning for the deceased, and a flood of memories and thoughts associated
with the deceased. An comprehensive study asked caregivers how they felt
immediately after the death of their loved one from Alzheimer's disease. The
statements made and the percent of caregivers making each statement are
tabulated below:
Feelings immediately after death of loved one [ in Percent].
- "The death was a relief" 77% ....."
- "I was ready to let him/her go" 77% ".....
- "I mourned for months before he/she died" 39% ...."
- "I was ready to get on with life" 31% ,,,
- "The death was a relief,but I felt guilty" 31%.... "
- "I kept praying that he/she would die" 23%....
- "I could not cry at all" 23%.
Many caregivers reported they could not cry even at the time of death, but that their most intense crying had been
done while performing caregiving duties. Elizabeth Kubler-Ross studied the
stages of grieving that caregivers go through. There are five general stages of
grieving, but not every caregiver experiences all the stages. The first stage is
denial. This is felt at the time Alzheimer's disease is first diagnosed. The
caregiver does not believe the diagnosis. They feel the doctor is mistaken and
may seek a second opinion. Other caregivers simply ignore the diagnosis and
pretend the patient will be fine. The second stage of grief is anger. The anger
can be directed anywhere- at God, physicians,or other family members. Caregivers
in this grief stage resent the care recipient for becoming ill and causing
physical, mental, and financial hardships. Family members may quarrel about care
of the patient or who is or is not doing their fair share of care. A third stage
of grief is bargaining. In this stage, caregivers try to modify or postpone the
disease from getting worse. They may search for new therapies, give the patient
vitamins and minerals, or go to other medical specialists. A fourth stage of
grief brings feelings of depression. In this stage, the illness and death of the
patient is realized as inevitable. Feelings of despair, sleeplessness, social
isolation, and physical illness may plague the caregiver in this stage. In the
fifth grief stage, caregivers fully accept the imminent death of the patient.
They live each day as best as possible, relishing the thought that the demented
spouse, although impaired, is still alive and offers companionship, if not
conversation. When a demented spouse dies, the caregiver initially feels a
relief, because constant caregiving chores end. For a while, feelings of
depression may even diminish. But as months pass after the patient dies,
depression actually begins to increase in many caregivers. Why is not fully
known. Many caregivers continue to attend support groups long after their loved
one has died. One study found, in fact, that 10.2% of spouses continued to
suffer from major depression for as long as three years after their husband/wife
died .
What determines the amount of grief felt by a
caregiver? Research tell us that caregivers who place their loved ones in a
nursing home experience far greater grief than those caregivers who have a loved
one die at home . Also, caregivers who experience the most burden from
caregiving seem to have the most grief when the patient dies. If the caregiver
bonded affectionately with the patient , then grief is less at the time of
death. But if there were feelings of ambivalence and guilt between the caregiver
and care recipient, then the caregiver feels more grief at the time of death.
Caregivers who obtain support and comfort from family and friends at the time of
death seem to feel less grief than caregivers who stay isolated. For example,
daughter caregivers feel less grief if at first, they get support from a parent
, and then obtain support and comfort from widowed friends. Spouse caregivers
who talk with others a great deal about the death of their spouse find that, a
year later, they think less frequently about the spouse's death . If caregivers
feel anger or guilt toward the patient, these feelings will make it more
difficult to prepare for the eventual death of the patient. Many caregivers feel
guilt when they place their loved one in a nursing home. These caregivers have
more grief burden because of the guilt . Guilt may be felt by the caregiver
because they feel they are not being caring enough, or maybe that they could
have done something to have prevented a nursing home placement. Caregivers also
feel anger for varied reasons. They may be angry at the patient who makes life
difficult. They may be angry at other kin who do not do their share of
caregiving. They may be angry at a social system that seems to place economic
hardship on the patient and the caregiver.