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."
Source: ALS Survival Guide
