Re: [MOL] ...Beav [01307] Medicine On Line

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Re: [MOL] ...Beav

Listen kiddo, many of us have not just been cancer patients; but caregivers
also.  We know both sides of the fence.
So dear heart, you are not in this alone; as you may feel many times over.
We are always here to listen to you and help in anyway that we can.  I am a
two time caregiver, Nancy is a two time caregiver and the list goes on.
This is one place you can say exactly how you feel and we are not going to
judge you.  I do know your one heck of a caregiver; but I am not so sure you
are taking care of yourself.  Is my hunch right?  What do you do for you
friend?  Love, lillian

We invite you to take a look at our Album.

  ( Very informational, good tips, Molers pictures, art work and much

----- Original Message -----
From: <>
To: <>
Sent: Monday, October 30, 2000 7:42 AM
Subject: 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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