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Managing The Stress ~ Making The Decisions ~ Discovering The Meaning |
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Caregiving |
Solutions To Your Caregiving Situations Throughout Your Caregiving Years |
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Death and dying Bereavement is as personal experience as caregiving
(Editor's Note: As family caregivers, you have been grieving--for possibly as long as years, often since first hearing your care recipient's diagnosis. When your care recipient dies, your grieving experience may be different than you expected. To help you cope with your grief, we asked one of the health care experts on our web site, Caregiving.com, to address the process of bereavement. Below are our questions to Marguerite O'Connor and her answers.)
Caregiving: Often, family caregivers have been grieving over a long period of time, sometimes decades. They first begin to grieve at time of diagnosis, then continue to grieve for a loss every time their care recipient declines. So, when the actual death occurs, family caregivers may not feel an immediate mourning, but may instead feel intense relief. Unfortunately, caregivers may feel guilty that they feel this relief, rather than the overwhelming grief they expected. Can you offer insight to help caregivers feel better about this experience? Marguerite: The term "anticipatory grief" is used in the literature to describe an intellectual acknowledgment that someone has received a serious diagnosis or is dying. Dr. Alan Wolfelt reminds us that it takes time and work for this news to sink in, to go from "head to heart." There is a sad window of opportunity here to make plans, to say the things we want to say, and do the things we want to do. This in no way minimizes the event or the loss when the chronic illness or death happens. The challenge is to use this opportunity to the best of our ability, possibly to make peace, reconcile, forgive, or to say: "I love you. I am grateful to have had you in my life." We should not "beat up on ourselves" if we experience a sense of relief, guilt, or "if onlys." Being a caregiver is often a labor of love, but it is a labor, nonetheless. Caregivers may feel a sense of relief when that the person's suffering has ended, or that the caregiver can reclaim aspects of his/her life. If there has been an ambiguous or conflicted relationship, there may be relief that you won't have to experience mood swings or upsetting behaviors such as alcohol or drug abuse. An element of guilt is normal, but it should not consume us. It is normal to feel some guilt. A counselor can help someone who gets stuck trying to differentiate a reality-based guilt vs. an imagined guilt. Children and adults can engage in "magical thinking" or feeling extreme powers that might have caused the event or changed the outcome.
Caregiving: Tell us about the bereavement process. What are the typical feelings and emotions? Marguerite: Bereaved persons should be monitored by their physician, but it is normal to feel sadness, anger, emptiness, shock, confusion, anxiety and guilt. Feelings such as anger can be targeted at friends, family, medical personnel, and even oneself, the deceased, or God. Physical sensations may include headaches, stomach aches, tightness in chest, dry mouth and muscle fatigue. It is important to refrain from self-diagnosis, but to be aware and practice self care. Treat yourself the way you would treat a friend. It is important not to stuff or deny your grief, but rather to share it, to mourn openly, inviting and welcoming nurturing support from others. Be tolerant of your boundaries and limitations; honor your need to slow down.
Caregiving: Sometimes when the emotions are too big, we can't manage the experience. But rituals or concrete actions may help us better understand and cope with our grief. Can you offer suggestions on rituals that family caregivers can implement to make their grieving process more tangible? Marguerite: Rituals mirror cultural heritage, the nature of the death and the relationship with the deceased. I have participated in/facilitated rituals from a few people to approximately a thousand people. Historically, we have found comfort from music, religion/spirituality, poems, flowers, organized structure and testimonials/telling the story. Other examples I've encountered: a woman bronzed her husband's work boot, as one would do with a baby's shoe. A man took the ribbon from the funeral flowers and tied that bow to the Christmas tree (*Be cautious of flammable materials near lights), or to the empty chair at the table. It's important to give yourself permission to change or adapt rituals. Ask yourself if the ritual is still working for you. If not, honor your preferences, as long as the rituals are helpful and not harmful. Be open to bereavement support and providing service to others.
Caregiving: What books do you suggest family caregivers read to better understand the grieving process? Marguerite: Some resources I regularly recommend include: “Understanding Grief: Helping Yourself Heal”, by Alan Wolfelt, 1992, Muncie, IN, Accelerated Development
“How to Go On Living When Someone You Love Dies”, by Therese Rando, 1988, Lexington Books
“The Art of Condolence: What to Write, What to Say, What to Do at Time of Loss”, by L. Zunin, 1992, Harperperennial
Websites:
Visit your local library or the Internet to find a growing number of resources. Be careful on the Internet, remembering that you might be more vulnerable after a loss and that some people misrepresent themselves.
Caregiving: As we know, there's no right or wrong to bereavement. However, there are red flags that may indicate someone needs professional assistance. Can you describe these red flags--signs and symptoms that we should be aware of? Marguerite: Everyone is unique and will grieve differently. It is not about right or wrong, but rather about honoring and understanding the differences. Don't let someone deny you the right to grieve. Even if you are not the decision maker, you don't have to allow yourself to be victimized. Create ways to honor the life that was lived and to celebrate your relationship. "Red flags" that may indicate that the bereaved is stuck or needing help include: high risk behaviors (e.g., drunk driving), grieving in isolation, suicidal ideation, chronic sleep and appetite disturbances, or a total lack of grief. Everything must be considered in context. The dynamics with family and friends around us are all affected.
Marguerite O'Connor is a Certified Funeral Celebrant who provides educational support for grieving people. Marguerite presents a variety of programs to help bereaved people learn healthy ways to cope with grief. She is a candidate for a Masters in Adult Education at National Louis University. Working Within the Laws of Nature Ethics Committees Help Iron Out Disagreements Knowing What to Expect Helps You Help Your Care Recipient |
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