By Deborah Bowen, MSW, LCSW and Susan Strickler, MEd
 

	Introduction		Stillbirth
	Alzheimer’s Disease		A Friend Suffers a Miscarriage or Stillbirth
	Caregiver Stress		Death of a Child at Any Age
	Caregivers & Alzheimer’s Disease		When a Friend’s Child Dies
	HIV/AIDS		Suicide
	A Friend with HIV/AIDS		When a Friend Has Survived a Suicide Death
	What Not to Do for a Friend with HIV/AIDS		Death of a Pet
	Miscarriage		When a Friend Has a Pet Die

 

Introduction

Certain illnesses and circumstances surrounding death require special considerations by friends and coworkers of those grieving. While the stages of grief are the same, par­ticular issues may need to be addressed and unique comforts given with different circumstances.

Alzheimer’s Disease

Alzheimer’s disease is the most common form of dementia, affect­ing people of all ages, races, religions, economic status, and eth­nicity. Its course is unpredictable.

Sue’s Story

The patient has days of mental clarity when a plateau is reached, and days of total confusion. Sue’s mother began her descent into Alzheimer’s disease slowly. At first, she got lost going to familiar places. She wrote notes to herself constantly, including listing her sisters’ names. She became suspicious of people, was less spontaneous, and progressively lost interest in former activities. She began to hide possessions, particularly dinner forks and shoes. Later, she could no longer recognize friends and family. Near the end of her life she stopped eating and remained in bed in a fetal position.

Caregiver Stress

As the illness progresses, caregivers of Alzheimer’s disease patients find their experience also to be progressively difficult. They have most (if not all) of the anticipatory grieving emotions during the process of the illness. They may feel angry, sad, guilty (“I want my life back, and I feel guilty about wanting it when she’s so sick.”), discouraged, irritable, or exhausted (“I can’t get any sleep. She wanders all night.”). Folks who have not experienced caring for a person with Alzheimer’s disease cannot understand how over­whelming this caregiving job is. Caregivers often feel alone and isolated in their roles.

Unfortunately, one of the by-products of caregiving for an Alzheimer’s disease patient is that the caregiver loses contact with friends and outside activities. Both friends and other family members may withdraw from the caregiver. Sometimes this withdrawal initiates from respect for the caregiver’s time and energy. Sometimes it stems from a lack of understanding: “She must be so busy; she doesn’t want to talk to me.” The caregiver may initiate the withdrawal because she simply does not have time to focus on anyone except the patient.

Because Alzheimer’s disease is such a slow, progressive illness, anticipatory grieving can last for years. Also, the grieving needs of the caregiver may be stronger before death than afterward, and support from friends is vital during this time. Be aware, also, that after los­ing a patient to death from Alzheimer’s disease, the caregiver may experience a tremendous void in her life, as well as a loss of direction and meaning. She still must deal with grief after death. Those same grieving stages that occurred before death will reappear. They may be couched in a different framework, but they still must be addressed. Your friend needs you during both phases of her grief.

What to Do for a Person Or Caregiver Who Copes with Alzheimer’s Disease

• Offer to stay with the person with Alzheimer’s disease so your friend can get out and do something for herself. If she cannot think of any activities, suggest a walk, a movie, or a religious ceremony.
• Prepare a meal. Try to organize a group of supporters so that a meal or two can be delivered each week. Make large portions so some can be frozen for another meal. Offer to feed the person with Alzheimer’s disease.
• Clean the house, do laundry, change linens, wash windows. Ask your friend if there is a particular task that needs addressing.
• Run errands.
• Pay for occasional respite stays in an adult care center. Transport the patient to appointments or to an adult care center (if used).
• Help install special locks on doors.
• Order identification bracelets.
• Provide gift certificates to encourage self-care for your friend. Suggestions include certificates for a massage, manicure, pedicure, or hairdresser. Then be willing to sit with the person with Alzheimer’s disease while your friend is out.
• Call if you cannot visit regularly.
• When you do visit, do not overextend your time, particularly if the patient is having a difficult day. Send inspirational cards or notes saying “I’m thinking about you.”
• Encourage your friend to join a support group. Most cities have caregivers’ support groups.
• Encourage journal writing.
• Allow your friend to vent, to express emotions, concerns, and frustrations.
• Help her cultivate her sense of humor. Create opportunities to laugh.
• Be nonjudgmental. Your friend is doing the best she can. Tell her so.

HIV/AIDS

While there are similarities in grief with all long-term illnesses, HIV/AIDS deserves a special mention because of a concept called “dis­enfranchised grief.” Disenfranchised grief occurs when the illness or death of a loved one is not acknowledged or socially accepted. Those who grieve losing someone to HIV/AIDS are sometimes denied the opportunity to openly express their feelings and be emotionally supported by friends and family.

The social stigma attached to HIV/AIDS, unfortunately, has not less­ened very much over the years since the virus/disease were discovered and named. Society still associates HIV/AIDS with risk-taking behaviors, so those who contract it, and their caregivers, often are often viewed negatively. Fear still plays a large part in the treatment of people living with HIV/AIDS. For example, we have spoken to health care providers who refused to care for patients with HIV/AIDS, and with family members who were afraid to visit their relative because they erroneously think they might “catch it.” (For more information on HIV/AIDS transmission click here to read the NASW HIV/AIDS General Overview.)

Peggy’s Story

Peggy said that her son, who was HIV positive, developed cancer, which later was the actual cause of his death. Peggy stated that she believed people were far more sympathetic to her grief with a diagnosis of cancer than they would have been with a diagnosis of HIV/AIDS. “I was so relieved that he got cancer, because I didn’t have to tell anyone he also had HIV.”

HIV/AIDS, like Alzheimer’s disease, is sinister in its progression. We have known persons who had advanced HIV/AIDS that affected their brain and could no longer communicate verbally. We also have known people who have died from this illness without their brain being affected. In any case, the illness can move quickly or slowly, and can create tremendous anticipatory grief for both the person with HIV/AIDS and his or her caregiver.

Insightful therapist Carl Rogers coined the phrase “uncondi­tional positive regard.” Rogers meant that we should hold others in the highest possible regard without demands or stipulations. It means caring without passing judgment. Perhaps with no other population does this concept mean so much as it does with people living with or dying from HIV/AIDS.

 

What to Do for A Friend Who Is Living with HIV/AIDS

The list outlined above for Alzheimer’s disease also can be used here. Follow these suggestions as well:

• Be aware of your own feelings about HIV/AIDS and people living with it. If you are not sincere in your concern and actions, or are afraid, the people you are trying to help will know it immediately.
• Hug the patient and the caregiver. Your willingness to touch people living with AIDS speaks of your caring far more clearly than any words ever could.
• Assist with paperwork.
• Assist with research concerning legal rights of partners.
• Help the patient stay on his or her medication. Talk with the patient about side-effects and how to keep up with a complex medication schedule (if you feel qualified).
• Take the patient for an outing, if he or she feels up to it.
• If there are children, offer to baby-sit so the caregiver or the patient can get out for a while.
• Assist with birthday parties and holidays.
• Provide emotional support. Allow the caregiver and the patient an opportunity to express emotions.
• Listen. After a death, the caregiver needs all the support listed above, but pay special attention to the following: Enable the survivor to tell his story.
• Understand that survivors of someone who has died from AIDS may have strong emotional outpourings, particularly anger, fear, guilt, and shame. Allow your friend to express those emotions. Remember that emotions are not right or wrong. They simply are.
• Your friend may have feelings of abandonment, both by the deceased person and by friends and family who, for whatever reason, were not present during the illness and death. Allow your friend to express those feelings.
• Be patient. Remember that grief has peaks and valleys, and is a roller coaster. Give your friend time and space. Remember birthdays, anniversaries, holidays, and death days. Perhaps you and other friends and family members could assist in planning and carrying out a special ritual or memorial service on these days.

 

What Not to Do for a Friend Who Is Living with HIV/AIDS

• Do not avoid the grieving person.
• Do not be judgmental.
• Do not avoid mentioning the name of the deceased.
• Do not get involved with family conflicts.
• Do not load up your friend with “shoulds.” You have no right to tell her what she or he needs to, or should, do or not do.

Miscarriage

According to the National Institute of Child Health and Human Development, National Institutes of Health Web site, about 15 percent of all pregnancies end in miscarriages. Unfortunately, society does not attend nearly well enough to those grieving such deaths.

Some of the most callous comments we have heard in our work have come from well-meaning people to those suf­fering loss from miscarriages. “You didn’t really know this child because it wasn’t born yet.” “You can have others.” “You should try to get pregnant again right away.” “At least you have other children.” What awful, insensitive statements!

Most often, in an anticipated pregnancy, parents begin to bond with a baby the minute the pregnancy is confirmed. This bonding becomes stronger as gestation progresses. When a miscarriage occurs, grief can be overwhelming. All the stages of grief appear. The mother may also feel that she is a failure because she was unable to bring the baby to term.

Marcy’s Story

Marcy miscarried her first child in August many years ago. Every August thereafter she has experienced depression, anger, sadness, and guilt over the life that might have been. Her feelings of loss never leave her.

Stillbirth

In a stillbirth, like a miscarriage, a life is ended before it has an opportunity to develop. Also, like in a miscarriage, attempts at comforting the grieving parents can be clumsy at best.

The difference between miscarriage and stillbirth is that in a miscarriage the fetus does not come to term, while in stillbirth a body must be cared for. Parents may choose to have a Baptism or memorial service in the hospital chapel. Some parents find a pic­ture or footprint of the baby comforting.

Remember that your friend not only grieves the loss of the child, but all the events in the child’s life that will never happen (the first tooth, high school graduation, marriage, children).

If you are a friend to someone grieving a stillbirth or miscar­riage, some of the suggestions below may be helpful.

What to Do When a Friend Suffers a Miscarriage or Stillbirth

• Attend whatever rituals or services your friend chooses to hold.
• Plant a memorial tree or bush for the family.
• Suggest that your friend light a memorial candle on holidays and special days, and participate in the lighting of this candle.
• Suggest that your friend join a support group, such as Compassionate Friends, an international organization for those grieving the loss of children.
• Suggest that your friend keep a journal of her grief work. Remember the anniversary date with a card or a call.

Death of a Child at Any Age

While in theory we believe that all grief is equal, we feel that in reality there is no greater grief than the loss of a child, regardless of the age. Whether the child is a newborn infant or twenty-one years old, all the theories we know regarding grief work seem to be invalid or, at best, inadequate. In our experience, families who have children die never appear to reach the closure stages noted by the experts. Grief experts now understand that a bereaved individual or parent can have an ongoing bond with their deceased child.

Dan’s Story

Dan, whose daughter was killed in a car accident, told us, “I learned to get through each day in a fog. I became a robot, doing what needed to be done at work, at home. The sharp, searing pain became a dull ache, which never goes away for a moment. Even as I learned to laugh again, I mourned that I could never laugh again with her.”

We expect elderly people to die. That is the order of nature. Somehow, the death of a young person disrupts this order. Most of us question the reason for death for anyone: “Why did he have to die of cancer? Of a heart attack?” There are, of course, no answers to these questions, but when they are asked about the death of a young person, the void seems bottomless: “Why so young? Why now?”

Often there is tremendous guilt surrounding the death of a youngster, regardless of the cause of death. The “if onlys” and the “what ifs” are endless.

April’s Story

April’s daughter left home at sixteen, liv­ing on the road, calling home occasionally, and usually coming home for Christmas. At twenty-eight, she was found dead of a heroin overdose. April’s anguish was inconsolable. “I wish I could have locked her in her room until she was thirty, keeping her safe. If only I had been more aware of her drug problem . . . if only I had tried to stop her . . . if, if, if.” The answer is that there are no answers.

Beth’s Story

Beth’s daughter died at age ten of leukemia. The years of treatments, the false promises of periods of remission, and the final acceptance of the illness took their toll on the whole family. Beth and her husband found themselves grieving the loss of their daughter differently from each other. Beth cried and wailed, while her husband maintained a stoic silence. The loss of a child can bring family members close to each other, or it can rip a fam­ily apart. Beth’s mother said, “Why did she have to die? Why couldn’t it have been me? I’m old and ready to go.” Again, there are no answers.

What To Do When A Friend’s Child Dies

Use any of the suggestions mentioned earlier in this article, as well as the following:

• Listen . . . again and again and again. Your friend needs more than anything to talk about the child. She needs to tell stories about his life and to mourn all the events that will never be.
• Say the child’s name. Doing so validates his life. Remember anniversary dates with a card, a telephone call, or a visit.
• Honor the child with a memorial gift to a foundation or organization (such as a school, church, etc).
• Create a living memorial by planting a tree, giving books to the local library (or his school library) in his memory, or donating playground equipment to his favorite park.

Suicide

According to suicide researcher and author Beryl S. Glover, suicide can be one of the most tragic forms of death. It is almost impossible to predict. According to the Centers for Disease Control, in the year 2000 alone, 29,350 lives were lost to suicide in America.

Suicide rates are especially high among the elderly, but often are misdiag­nosed. Many elderly people suffer from chronic physical illness and cannot tolerate the loss of independence and self-sufficiency. Elder suicide often has been ruled as unintentional drug over-dose. Fortunately, medical professionals are becoming more aware of the growing trend of elderly depression and suicide, and are taking measures to help.

Suicide patterns have changed among young people recently, and attempts have risen dramatically. Suicidal adolescents, like suicidal adults, may be deeply depressed, but signs are sometimes difficult to recognize because they may manifest themselves as boredom or physical complaints.

There are many reasons people commit, or attempt to commit, suicide, but that discussion is beyond the scope of this article. However, it is important to note that any suicide attempt or threat should be treated seriously. If you suspect that a friend or coworker is planning a suicide attempt, seek professional assistance immediately.

The stigma of this type of death can entail more shock and denial than many other kinds of deaths. Survivors of a suicidal death certainly experience all the stages of grief, but they often have a prolonged period of numbness, so that there appears to be an absence of feeling.

The suicide survivor has the right to feel (or not to feel) any emotion after the death of a loved one. She may feel shame, guilt, or disbelief: “Why didn’t he leave me a note?” She may blame herself: “What did I do wrong?” “Could I have prevented it?” She also may feel anger or a sense of relief that the person no longer suffers from mental or physical illness.

Suicide survival can be thought of as another kind of disenfranchised grief, one not generally discussed. This often results in a lack of emotional and social support for the survivor. Fortunately, this stigma is changing, and the pain felt by the sur­vivors is becoming more easily acknowledged.

What To Do When A Friend Has Survived A Suicide Death

• Encourage your friend to talk about her feelings. Help your friend deal with “unfinished business” (i.e., finding a way to say good-bye).
• Be careful about being judgmental. Avoid clichés.
• Allow your friend to cry, scream, or express emotions in any way. Be aware of potentially intense feelings. Help your friend to laugh and to celebrate the life of the deceased person.
• Encourage your friend to join a support group. Most cities have such groups for suicide survivors.
• Understand the uniqueness of suicide grief.

Death of a Pet

The death of a pet can be traumatic for both children and adults. Pets love unconditionally. They ask for little in return for affection and companionship. Fortunately, society is beginning to accept the reality of the grief felt when a pet dies.

Deb’s Story

Deb lived for eighteen years with Merlin, the Magic Cat. He was her constant companion, loving to ride in the car, walk on the beach, and even ride in her boat. When he died, it was as if her best friend had died. Merlin also was special to many of Deb’s friends, and some of them were with Deb and Merlin in his final hours. Friends and family brought food and attended a memorial service honoring his life. Merlin was cremated, and Deb’s friends helped her scatter his ashes. A friend painted a portrait of him from a photograph. Her employer granted her three days of bereavement leave from work.

Grief over the death of a pet is no different from grief over a person, although the grief varies in intensity from person to person. One can experience all the emotions common to grieving the loss of a person, including anger (particularly if the pet was killed) and guilt (“I should not have left her outside”). It is important to note that each member of a family has a unique relationship with a family pet, and each relationship should be honored, including the variety of emo­tions that various family members may feel at any one given time.

Children should be involved in any rituals and memory shar­ing regarding a pet. If the decision is made to euthanize the pet, children should be informed beforehand, so that they can have their special time to say good-bye.

Older adults often have special relationships with their pets, particularly if they live alone with the pet. Sometimes the death of a pet can bring up old feelings regarding the death of a loved one, resulting in compounded grief.

What to Do When a Friend Has a Pet Die

Certainly, all the suggestions in this article regarding the death of any loved one can apply to the death of a pet. However, below are some special considerations:

• Be careful regarding how you express sympathy. Treat the death as you would any other loss. Do not minimize the death in any way. Do not say, “You can get another cat.” “I know someone who has a dog just like yours and she just had puppies.” “At least you can go out now without worrying about the dog.”
• Telephone, send a card, or visit.
• Offer to frame a special photograph of the pet. A friend who recently lost a pet was given a beautifully framed poem about, and photo of, his cat.
• Present your friend with an ornament or statue that symbolizes his relationship with his pet.

The book A Good Friend for Bad Times:  Helping Others Through Grief, by Deborah E. Bowen, MSW and Susan L. Strickler is published by Augsburg Books and is available at www.augsburgbooks.com.  It is also available at other Internet book retailers and at local bookstores.

###The opinions expressed in this article are those of the writer, and do not necessarily reflect those of the National Association of Social Workers or its members.