Re: [MOL] Caregiver Grief: Dealing with Ongoing Loss.... [01293] Medicine On Line

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Re: [MOL] Caregiver Grief: Dealing with Ongoing Loss....

Thanks Lillian for posting this article. It is very hard
dealing with being a caregiver, this is really good info. to
help deal with the emotions involved. I am so glad I found
this group on this forum. Thank God!!  For all of your
support and prayers....Love,    Beav

Lillian wrote:

>         Caregiver 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."
> 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:
> Last updated December 02, 1998  We invite you to take a
> look at our Album.
>   ( Very
> informational, good tips, Molers pictures, art work and
> much more....

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