Aging Forward: Coping with the Grief and Guilt of Dementia

Patrick Arbore
By Patrick Arbore June 15, 2015 21:50

sad womanImagine that your mother, 78, leaves your house after a late lunch and a pleasant visit.

She has made the five-mile drive from your house to hers many times. A few minutes later you call to make sure she made it home safely, but there’s no answer. Time goes by, you call again and once more it goes to voice mail.

You drive to her house and she’s not there. What happened? Fear and worry consume you. You contact the police and call hospital emergency rooms without success. Finally, late in the evening, the Highway Patrol calls: Your mother had driven 50 miles in the opposite direction of her home before she ran off the road into a ditch. She is confused and dazed, but otherwise OK.

A neurologist later examines your mom and diagnoses her with dementia, probably Alzheimer’s disease.

You are not alone: According to the Alzheimer’s Association, more than 470,000 new cases will be diagnosed in the U.S. this year. More than five million Americans have Alzheimer’s, the sixth leading cause of death in the U.S.

The diagnosis often leaves family members with intense feelings of disbelief, fear, dread, uncertainty and guilt.

Guilt surfaces almost immediately as you reflect on behavior that earlier seemed insignificant but now assumes greater meaning. Mother, you remember, sometimes appeared confused, agitated and distant. This was new and the family quickly dismissed it at the time, attributing it to fatigue or simply aging.

Now, however, family members feel guilty about not discussing these behaviors. They wonder how long Mom has been scared and upset by her failing memory. After talking with her doctor, a social worker and others, the family decides to take away her car keys.

She will also need care. But for Mom, the prospect of being cared for by a family member is difficult to accept because she has always been very independent. A care plan must be created and implemented by the adult children who live in the area. Everyone’s life is about to change.

Knowing that there is no cure for dementia, family caregivers grieve as they observe Mom’s mental and physical decline. Depending on the disease’s progression, they may be reluctant even to talk about it for fear of distressing her.

What they’re experiencing is referred to as anticipatory grief.

“It’s the normal process of mourning that occurs in anticipation of a death and its consequences,” says Therese Rando, a clinical psychologist and a national expert on grief and loss. While most researchers agree that family caregivers experience this chronic grief, few studies explore the issue.

In the disease’s early stages, family members, particularly adult children, may be too busy with the caregiving to experience grief. Coming to grips with their new role, they seek information about the disease, make decisions about care and focus on the mental and physical condition of their loved one.

Sadness emerges, however, when family members discuss not who their loved one is but who he or she was. Seeing the once healthy, competent person slowly and agonizingly disappear defines the approach-avoidance phase of seeing the impact of the disease. Family members are not ready at this stage to see their loved one as he or she is now.

As dementia progresses, many family caregivers experience a “long goodbye.” Initial sadness collides with harsh realities as time goes on. Whether a spouse, adult child, sibling or other relative, family caregivers may be forced to reduce their work hours or quit jobs to support their loved one. Grief, sadness and anger combine with guilt as the caregiver realizes that his or her own life is suffering due to the demands of dementia.

Just making it through the day is exhausting and often depressing. But getting relief by putting Mom in a nursing home gives rise to worry and guilt – particularly if in the past you promised to keep her at home no matter what.

Unique for caregivers is the dual nature of this grief. The loss accompanying the decline of a loved one from one level of functioning to a lower level triggers acute grief, as if the person is actually dead. Yet he or she is still alive.

In this final stage, the accumulation of fatigue, longing, hope, despair and emptiness weighs heavily on caregivers. They treasure memories of when their loved one was lucid. Once death finally comes, caregivers often experience a period of relief. This, however, may be followed by deep sorrow, anguish, guilt and sometimes despair.

In my own interactions with family caregivers after the death of their loved one, I have seen a variety of coping behaviors. Many caregivers find emotional support through their families, friends, church groups or other organizations (see FAN’s list of Caregiver Support Groups on our Resource HQ page). Some reach out for professional help through community mental health programs, and others choose to grieve alone.

What I hear most often is gratitude for being with their loved one during this difficult period, an experience that has increased their knowledge of the aging process and illuminated the value of relationships.

While there is grief for what has been lost, there is also an awareness of what has been gained.

Patrick Arbore is the founder and director of the Center for Elderly Suicide Prevention and Grief Related Services at San Francisco’s Institute on Aging. He also founded and directs the Friendship Line, a 24-hour help line for older adults coping with anxiety, grief, loneliness or other issues: 1-800-971-0016.

Copyright © 2015 Friends and Neighbors Magazine

Patrick Arbore
By Patrick Arbore June 15, 2015 21:50
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