Stage Four, section 5: Grieving

The grieving process is something that both you and your care recipient will experience.

You will begin to grieve during your caregiving years and grieve again after your care receiver's death even if temporarily relieved after years of caregiving. Allow yourself to have this experience in order to heal.

Before Death

Based on the studies of Elizabeth Kubler-Ross, caregiver grief can be seen as having stages similar to those of other grief experiences. Not all caregivers go through every stage, and some may have grief reactions a number of times during the course of caregiving, as there are losses all along the way. Here are the five stages of caregiver grief:

• Denial: not believing the diagnosis, pretending everything will be fine.

• Anger: which may be directed anywhere, at the care receiever, other family members, physicians, God.

• Bargaining: searching for new therapies, going to medical specialists.

• Depression: illness and death of patient is understood as inevitable, and the caregiver may experience physical illness, despair, and social isolation.

• Acceptance: living each day as well as possible, knowing that the death of the loved one is imminent.

When your care receiver is facing death, he or she will also go through stages of grief. Here are things you can do to make this process easier and the last months of life more meaningful and enjoyable:

• Provide materials for expression through art.

• Provide a journal or tape recorder.

• Offer some of his or her favorite things. For example, if your care receiver loved bird watching but is now confined to the house, try to place his bed or chair near a window with a view of birds.

• If applicable, make use of the comprehensive care and support offered by hospice.

• Provide a "life review book". This is a big scrapbook with a person's life story including photographs and memorabilia if desired. Family, friends, or Hospice volunteers may have time to help with this project. Ask visitors who are willing to add comments and memories. Some people prefer to have visitors put their comments in a journal or notebook that is kept in the room.

• Let your care receiver know how proud you are of his or her accomplishments as well as how much you will miss him or her. People who feel they lived successfully may die more peacefully.

• If you made the reminiscence videotape suggested in Stage One, section 2, you and your care receiver might want to look at it together. If you didn't make one, you may want to make it now. If you are unable to make a videotape, try an audiotape. The sound of your care receiver's voice after he or she is gone can be a treasure.

• Request visits from clergy for spiritual guidance and sometimes for reconciliation.

• Call other relatives and friends to give them a chance to visit, make peace if needed, and say goodbye. Realize that some will not come. Unfortunately, fear robs some people of the privilege of spending time with a dying friend or relative. Some people may not come because of prior conflicts, even though reconciliation makes for an easier grieving process after the person is gone. For more about the value of visiting persons who are close to death, see Stage Four, section 1.

• A dying person who is unable to communicate may still be able to sense on another level that he or she is being honored for the gifts his or her life provided to the world. Even if your care receiver suffers from dementia, it will mean a lot to the survivors to read comments, funny stories, and expressions of gratitude from people who knew your care receiver at various times of his or her life.

• If your care recipient has Alzheimer's or other cognitive impairment, give him or her a chance to grieve, also. Smells, touches, and music may be helpful in reaching a person with dementia to allow for grieving.

After Death

After the death of your care receiver, you will grieve again even if you first feel relief that the struggle is over. Having support for your grieving is helpful, especially from others who have experienced a similar loss of a parent or spouse. If this death represents the loss of your only living parent, you may feel like an adult orphan. When you realize that you are no longer anyone's child, that you are on your own without a safety net, you may feel adrift without a rudder. This can lead to new growth and greater independence, but at first it feels like an empty hole.

Spouses who are widowed sometimes become preoccupied with the deceased spouse, thinking about them constantly and having dreams or nightmares about them. It is normal for people who are grieving to think they see or hear their deceased loved one.

People who are bereaved may lose weight, have trouble sleeping, become irritable or listless, and feel short of breath. It is important to go through the process of grieving and "feel the pain" rather than numbing it with alcohol or medications.

Even a ninety-year-old survivor needs to grieve the loss of a loved one. According to "Ideas from Loss in Later Life," a teleconference sponsored by the Hospice Foundation of America April 24, 2002, society discounts losses that old people experience because death of relatives and friends is expected at that age. A comment such as, "Your spouse lived a good life and is at peace" does not acknowledge the survivor's pain. The loss is still tragic to the elderly widow or widower. It still needs to be grieved, and the survivor needs the support of family and friends. Visit Hospice Foundation of America's web site, www.hospicefoundation.org.

Participating in rituals related to death is beneficial. Nursing homes used to hide death, drawing the drapes and taking out bodies while the residents were at dinner. This is changing now as the importance of acknowledging the death is realized. Some nursing homes work with funeral homes to have afternoon viewings, with transportation provided for residents. Many offer monthly memorial services at the nursing home.

Some nursing homes offer special ceremonies. A June 9, 2002 St. Petersburg Times Special Report called "Alone Together - A Year in the Life of an Alzheimer's Support Group" described a service offered by Bon Secours Maria Manor in St. Petersburg, Florida. "When staffers think a resident will die within three days, they begin a ceremony they call 'Angels Passing By.' Aides stay in the room round the clock. They bring a CD player for soft music, an angel pin for the pillow, lotions for rubbing, and a journal so people can write messages." Other nursing homes may be trying equally innovative approaches to honoring the dying person and comforting the grieving.

Helpful Resources

• How To Care for Aging Parents-A Complete Guide by Virginia Morris devotes forty pages to end-of-life, death, and grieving. The dying process is described.

• The Hospice of the Florida Suncoast Web Site, www.thehospice.org, offers articles about end-of-life personal care, the dying process, and grieving as part of Practical Caregiver Tips.

• The AARP web site, www.aarp.org, includes a Grief and Loss section with information for spouses, adult children, men who are grieving, employers of persons who are grieving, and others. The End of Life section of the web site includes a "Final Details Planner".

• Network of Care: www.networkofcare.org. Created by the California Department of Aging, this web site may help caregivers anywhere. The "Library" includes End-of-Life Care. "Checklist After a Death" is one of the articles.

Next: Caring for the Stage Four Caregiver.