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In  re-reading for the first time in a long while, I can speak for my daughter Kelly in that I know she  went through a lot of this dealing with her own losses from HD, probably 100 fold to what I did as  her caregiver. Mine, as it  were, was "temporary" although so deeply ingrained in my heart and soul  forever. If you think of it this way, then maybe you can have a little better appreciation for how your loved one feels too.  I apologize, I can't remember which website this article appeared in.
Caregiver's Grief ~
Dealing With Ongoing Loss
By Pat Kaufman
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

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