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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.
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."
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."
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.
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
Last updated December 02,
1998
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