| Caregiver Grief: Dealing with Ongoing Loss by Pat Kaufman |
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Even after two years of caring for her husband who has Parkinson's disease, Ellen Berkley still finds it
difficult to catalogue her feelings. "You'd think that by now I would have worked everything out. But
my emotions are still so volatile. One day I feel like I can really handle things; by the next day I'm teary
and angry about what has happened to my life. Then I feel guilty for being so selfish. After all, Bob is
the one who has to cope with a debilitating disease each day, not me. I keep wondering how long I'm
going to be on this emotional roller coaster."
Ellen Berkley's multiple reactions to her situation are not uncommon. They are the result of a difficult
pattern unique to caregivers. "Caregivers suffer a multiplicity of losses," explains Susan Jacobstein, a
licensed clinical social worker with the Oncology Program at Suburban Hospital in Bethesda,
Maryland. "Often when illness strikes they are confronted not only with the loss of a healthy loved one,
but with a loss of income, loss of control, the loss of their own independence, and the loss of their
plans for the future, as well." Because the impact of these losses will be felt in recurring ways as the
care recipient's illness progresses, a caregiver's reactions to them may recur as well.
The Grieving Process
A loss is a death of sorts, and the natural reaction to loss is to grieve. For caregivers, whose losses are
sustained over a long period of time, grieving itself can become a long-term process. "Illnesses that
keep changing can bring grieving and re-grieving," says Judith Bernardi, M.S.W., Ph.D., a psychologist
in private practice in Silver Spring, Maryland. "As caregivers go through the various stages of the
illness with their loved one, they may experience, variously, sadness, anger,
weepiness, depression, even despair," Dr. Bernardi counsels.
Susan Jacobstein, in her role as co-facilitator of a caregivers' support group, has seen firsthand that the
stages of a caregiver's grief don't come in neat, orderly packages. She has observed that many
emotions can co-exist, appearing and re-appearing periodically. "You can feel tearful and hopeful at
the same time," she says, "and it's very common to have this happen. Everyone maintains a mixture of
feelings."
Understanding What Is Happening to You
As a caregiver, you don't need anyone to tell you to expect the unexpected in dealing with your
everyday caregiving duties. But it helps to be reminded that it's natural for your own emotions to take
some unexpected twists and turns, too.
Susan Jacobstein has found that in the initial stages of a new diagnosis, which is a particularly high
stress time, the emotions associated with loss and grief, such as anger, denial, sadness and fear, can be
particularly strong. Even after you think you've worked through them, they can recur in the face of a
loved one's worsening condition or relapse. These stressful feelings can lead to a breakdown in
communications. "People feel protective about each other," says Jacobstein, "and in trying to shield
each other's feelings they can become isolated. It's not really what they need or want to do." Often it's
enough simply to realize what is happening. When you understand why you are feeling a certain way,
you can deal with what's really bothering you.
Dr. Bernardi explains that sometimes one emotion can actually be a mask for a complex series of
feelings. "A caregiver may tell me that she's angry. But after we talk she comes to realize that the anger
is really a mask for fear - the fear of 'what's going to happen to me?' And that's where the guilt comes
in, because the caregiver doesn't think she has the right to be feeling this way. So she hides all her fear
and guilt behind anger." Once you realize that you are allowed to have your feelings, you can get
comfortable with them. "When you understand what's really happening to you," says Dr. Bernardi,
"then you can develop effective coping mechanisms."
Ann Hisle, a clinical social worker who is also a co-facilitator of the Suburban Hospital caregivers
support group, believes that loss is the driving force behind much of the emotional turmoil felt by
caregivers. "Loss brings us face to face with our own vulnerability," she says. Part of the process of
coming to terms with the grief loss brings, she advises, is accepting one's own limitations. "Good mental
health is finding a balance between loving ourselves and loving others," she says. "Caregivers must give
themselves permission to live their own lives."
Finding Ways to Cope with Grief
Grief and ways of coping with loss are very individual matters. But, as with so many human emotions,
there is common ground as well. Within that commonality of experience are things that have helped
others get through similar difficulties. Our experts offer these suggestions for coping with the recurring
grieving process that besets so many caregivers:
1. Join a support group or network. While it's true that not everyone is comfortable in a support
group, the benefits these groups offer are very significant. "The beauty of a support group," says
Jacobstein, "is finding others who recognize what you're feeling. The knowledge that others understand
and share your emotions can be extremely comforting." Groups also act as a respite, Jacobstein has
found, giving caregivers a chance both to exchange practical tips that can make their jobs easier, and
to enjoy the unique humor that bonds those who share difficult circumstances. Lacy Camp, a marriage
and family therapist at the Samaritan Counseling Center in Athens, Georgia, puts support groups at the
top of her list for helping caregivers cope. She says, "You find out that you're not in this alone, that
you're not crazy, and that you can survive."
If you don't want to join a group, find a friend through a support network. It provides an outlet for
talking about the things you are feeling. "Donąt bottle up your feelings," advises Camp, "or they will
come out in ways that can be dysfunctional or undermining." Whether you choose a group, or a friend,
or a therapist, says Dr. Judith Bernardi, "you need to provide yourself with a safe environment for
talking about your feelings. It helps you deal with the uncertainties of caregiving and gives you a way to
rescript as you go along."
2. Give yourself permission to have a life of your own. Although it often may not seem like it,
being a caregiver is only one facet of what defines you. "You are called on to have a life," says Ann
Hisle, "and you must live it."
Hisle suggests setting aside some time that is just for you, like going out to lunch once a week or
reserving some private periods at home to do the things that relax you. "You need to center yourself to
find internal peace," Hisle believes. She acknowledges that there will be times when your care recipient
might not want you to go. On those occasions, says Hisle you must be ready to explain that it's
important for you to have some time to yourself, but it's also important to you to be there for your care
recipient. These goals, far from being mutually exclusive, must both be fulfilled if you are to be an
effective caregiver.
Maintaining your own life takes some very practical forms, as well. Be sure you get enough sleep, Hisle
counsels, and make time for exercise, even if its just a short walk outdoors or dancing to music inside
the house.
Lacy Camp adds that one of the quickest ways to feel defeated is to allow yourself to become
isolated. She suggests that caregivers try to join a larger network, through a church or other
organization, that will allow them the opportunity to get away for some time to themselves. "It's not
always easy to do this," concedes Camp, "but you've got to be willing to be creative in looking for
ways to get help."
3. Be informed about what to expect. Uncertainty can be a source of great agitation. When an
illness strikes, one of the most difficult things for caregivers and their care recipients is not knowing
what to expect next. As one caregiver told Susan Jacobstein, "I feel like I suddenly need to get a Ph.D.
in cancer."
One way to relieve some of the anxiety is to be informed about what's going to happen next, whether
it's the physical reaction your care recipient will have to a new treatment or the emotional reaction you
both may experience when old friends can't seem to adjust to your new circumstances. Write down the
questions you have and be aggressive about getting answers to them. Whatever is in store next may not
be pleasant, but in caregiving as in any other battle, forewarned is still forearmed.
Finding What Works for You
The grief process that caregivers experience, grieving over a long period for the losses that seem to
stack up as time goes on, do not occur in a straight line. As our experts have told us, there are many
stages of grief and they can recur, or even appear simultaneously. No one would say that the process
is avoidable. But all our experts sounded some hopeful notes.
Ann Hisle has found that people are often resilient students of life, finding understanding in the belief
that we are all part of something bigger than ourselves. "There is a sense among many people that they
are part of a cycle, and, having experienced loss in other ways, they are able to integrate their earlier
losses in helping them cope with this latest loss."
Lacy Camp counsels caregivers to take pride in their efforts and to realize that "you can only do what
you can do. Being a caregiver is difficult, and the job you are doing is remarkable. Allow yourselves to
respond in your own way."
Susan Jacobstein says, "Families all cope differently. There are no grades here. You donąt get an 'A'
for doing this right."
Dr. Judith Bernardi sounds a similar note. "There is no dress rehearsal for this job [of caregiving]. At
each juncture you rise to the occasion as best you can."
There is no denying that caregivers experience an ongoing grieving process as they try to adjust to the
multiple losses that accompany the illness of a loved one. There are no easy or glib answers to alleviate
the conflicting emotions that caregivers feel, but there are some ways to help bring those emotions
under control. By making an effort to understand what is happening to you and why you feel the way
you do, you can take a significant first step in coping with your grief. And by caring for yourself, and
for your own emotional well-being, you help yourself continue to be an effective caregiver for others,
and have a better quality of life yourself.
© copyright 1998, National Family Caregivers Association
National Family Caregivers Association is a charitable, membership-based organization dedicated
to making life better for all of America's family caregivers. For information call/write/email:
1 800 896 3650
National Family Caregivers Association
10605 Concord Street, Kensington, MD 20985,
email address: info@nfcacares.org
Reprinted with permission of the National Family Caregivers Association, Kensington, MD, the nations only organisation for all family caregivers. 1-800-896-3650; www.nfcacares.org
SEE ALSO:
- Ten Tips For Family Caregivers
- Coping With Caregiver Grief by Suzanne Mintz
- Caregiver Grief: Dealing with Ongoing Loss by Pat Kaufman
- Stages of Careving, by Nancy B. Miller, Ph.D., MSW
The main link for these articles can be found here.
