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Support
There are many types of support available - you will find a selection below.
Please email me to add anything you have found useful to this list.
Helpful Do's and Don’ts for the Support Person
Wish List for Bereaved Parents
How to Comfort Someone Whose Child Dies
The Grieving Person's Bill of Rights
The following websites are not connected with Sands in any way but you may find them helpful:
Describes itself as a site to find "Uplifting support materials and resources for those who have been touched by a crisis in pregnancy or the death of a baby".
Includes a Remembrance Book, a message board to share stories, a resource page and a "mall" for remembrance keepsakes.
ARC - Antenatal Testing Information And Choices
Antenatal results and choices, is the only national charity which provides non-directive support and information to parents throughout the antenatal testing process. It is for parents who have had or may have a pregnancy terminated because their baby has a serious condition which is incompatible with life.
They see their role as helping parents arrive at the most appropriate decision for them in the context of their family life.
AvMA - Action against medical accidents
Action against Medical Accidents (AvMA) is an independent charity which promotes better patient safety and justice for people who have been affected by a medical accident. AvMA celebrates its 25th anniversary in 2007-2008. A 'medical accident' is where unintended harm has been caused as a result of treatment or failure to treat appropriately. This includes where the care has been negligent, but does not necessarily mean that it was. AvMA believes that whatever the cause of a medical accident, the people affected deserve explanations, support, and where appropriate, compensation. Furthermore, we all deserve to know that the necessary steps will be taken to prevent similar accidents being repeated.
Babyloss - A Wealth of Support & Information
A UK based site which provides a variety of information and support online for women and their partners who have experienced the devastating loss of a baby.
The content of this site includes forums, a chat room, book reviews and information, groups, next pregnancy support and much more.
Babysteps - Information To Aid Recovery From The Loss Of A Child
Is named after the baby steps that form the long and difficult road to recovery from the loss of a child. No parent, relative or friend is immune from the pain that results from the loss of a young loved one.
It includes rooms for parents, siblings, grandparents and others to write and share their stories about their loss.
Babyworld - All round help
Offers support during preganancy, loss of your baby and the early years with a baby.
BLISS - Information And Support For Parents of Children In Intensive Care
Offers information and support to parents of newborn babies who are in intensive care and need special care.
Born Too Soon - Comprehensive and Moving Website This site is temporarily unavailable
Is a site written by a bereaved mother and covers everything from FAQs to gifts to remember your baby.
Child Bereavement - Information From The Child Bereavement Trust
This is the website of the Child Bereavement Trust and offers information and support to families who have lost a baby or child at any time, under any circumstances. They also provide training to healthcare professionals involved with caring for bereaved families.
A Helpline for all those affected by the death of a child.
Foundation of the Study of Infant Death - Sudden Infant Death
Is a website full of support and resources for parents whose babies have died as a result of Sudden Infant Death.
Find your local registers office and help on how to register your baby.
Honored Babies - A Memorial Site
Is a site written by women helping women through the experiences of miscarriage, ectopic pregnancy, pregnancy termination, stillbirth, neonatal & infant death.
It includes a place to share stories, remember your baby, e-mail support lists for mothers, fathers, siblings, grandparents and friends.
This site provides valuable information for sufferers and carers of people with Panic, Anxiety, Phobias and Obsessive Compulsive Disorders (OCD).
SPALS - Subsequent Pregnancy After a Loss Support
SPALS is a warm and compassionate community of people who have experienced the loss of a child due to miscarriage, selective termination, stillbirth, neonatal death, sudden infant death, or accidental death. SPALS is an active support network, with about 400 members sharing mutual support and information regarding subsequent pregnancy.
The Miscarriage Association - Information And Support
Is the website of the Miscarriage Association they provide information and support for parents who have experienced birth loss or miscarriage.
TAMBA (Twins and Multiple Birth Association) - Bereavement Services Group
Offers support and resources for parents who have lost twins in pregnancy, or after birth.
Specialist Organisations
(Please note Sands cannot guarantee the accuracy of the information on these sites)
Action on Pre-Eclampsia (APEC) This site is temporarily unavailable
Aims to ease and prevent suffering from pre-eclampsia and improve care and understanding of the condition.
Association for Children with Heart Disorders
Helps hospitals with funding for vital pieces of equipment and give support and understanding to parents and families.
Anencephaly Support
Tel: 01684 573974
The group aims to provide emotional support to families, to give information on the condition and provide an opportunity to talk to someone who has also lost a baby with anecephaly.
ASBAH (Association for Spina Bifida and Hydrocephalus)
Has information and support for parents of children with spina bifida and/or hydrocephalus. Bereaved can speak to medical advisors.
Funds research into the causes, prevention, diagnosis and treatment of heart disease. It has a wide range of information available.
British Kidney Patient Association
Tel: 01420 472021/2
Counselling and advice for patients with kidney problems
Can give medical information about all forms of liver problems.
Offers support for affected adults and support for families of children with thyroid disorders.
Children's Liver Disease Foundation
Pioneering research, effective education and giving professional, caring emotional support to families and young people with a liver disease.
CLIMB (Children Living with Metabolic Disorders)
Information and support about metabolic diseases
Congenital CMV Association
Tel: 01743 850055 (answerphone)
Self Help Group offering contact between families and campaigning for further research. It publishes a newsletter and has information available.
UK-wide charity providing support, advice and information for families with disabled children.
Has an online directory of support organisations for many conditions.
Help and support for people with diabetes. Information for parents.
Offers information, advice, counselling and support for parents of children with Down’s syndrome.
DPPi (Disability Pregnancy and Parenthood international)
Support for parents with disabilities and long term health problems.
National alliance of organisations with a membership of over 120 charities which support children, families and individuals affected by genetic disorders / genetic diseases.
Offers support and information by telephone and letter and aims to raise awareness of Group B Streptococcus infection. Responds to enquiries from the families of affected babies and women known to carry or have carried the bacteria.
Offers support and information on aspects of congenital heart disease in babies and children and parent contact through a nationwide network of groups.
Aims to provide information about Hughes syndrome (antiphospholipid syndrome: APS) and to help with research into this condition.
Offers a wide range of information about Lupus (SLE) and information about Hughes syndrome.
Meningitis Research Foundation
Offers information, befriending and support for people affected by meningitis and septicaemia. Including support for those who have been bereaved.
Miscarriage Association This site is temporarily unavailable
Support and information for those who have suffered the loss of a pregnancy before 24 weeks.
Offers support for people affected by meningitis/ meningococcal disease.
Obstetric Cholestasis Support
Tel: 0121 353 0699
Provides support to mothers who have the condition and information to those who think they may have had the condition but need to be diagnosed
Potter’s Syndrome Support Group
Tel: 01938 553755
Support for parents bereaved by this syndrome (absence of kidneys); fact sheet.
PROM - (Preterm) Premature Rupture Of Membranes
Hopefully this page can be of some help in the research of finding what causes PPROM, and how to prevent it from happening, or happening again - if it is possible. Here you can read many PROM stories and find information on different situations around PROM, given from women who have experienced PROM. This information page is deliberately built upon the belief that there is a chance of a successful outcome, and that knowledge can help or prevent future PROM babies.
SENSE
Fact sheets about complications caused by rubella in pregnancy.
Information, Counselling and Caring for those with Sickle Cell Disorders and their families
Support Organisation For Trisomy 13/18 and related disorders. Supports families including those who baby has died.
Offers advice and support for affected families together with counselling for carriers, affected individuals and families.
UNIQUE – rare chromosome Disorder Group
A source of information, mutual support and self-help to families of children with any rare chromosome disorders.
Information about Vasa Previa: symptom, signs and treatment.
Helpful Do's and Don’ts for the Support Person
DO’s
*Do let your genuine concern and caring show
*Do be available . . . to listen, to run errands, to help with the other children, or whatever else seems needed.
*Do say you are sorry about what has happened to their child and about their pain.
*Do allow them to express as much grief as they are feeling at the moment and are willing to share.
*Do encourage them to be patient with themselves, not to expect too much of themselves and not to impose any “we should…” on themselves.
*Do allow them to talk about the child the have lost as much and as often as they want to.
*Do talk about the special endearing qualities of the child they have lost.
*Do give special attention to the child’s brothers and sisters at the funeral home, during the funeral and in the months to come. The too are hurting and are confused and are in need of attention which their parents may not be able to give at this time.
*Do reassure them that they did everything they could, that the medical care received was the best or whatever else you know to be TRUE and POSITIVE about the care given their child. Don’t let your own sense of helplessness keep you from reaching out to a bereaved parent.
DON’Ts
*Don’t avoid them because you are uncomfortable (being avoided by friends and family adds pain to an already intolerably painful experience.)
*Don’t say you know how they feel (unless you have lost a child yourself, you probably do not know how they feel).
*Don’t say, “You ought to be feeling better by now” or anything else which implies a judgment about their feelings.
*Don’t tell them what they SHOULD feel or do.
*Don’t change the subject when they mention their dead child.
*Don’t avoid mentioning the child’s name out of fear of reminding them of their pain . . .they haven’t forgotten!
*Don’t try to find something positive about the child’s death (moral lessons, closer family ties, etc.).
*Don’t point out that at least they have the other children (children are not interchangeable. . . they cannot replace the child that is gone.)
*Don’t say, “You can always have another child.” Even if they wanted to and could, another child would not replace the child they have lost.
*Don’t suggest that they should be grateful for the other children (grief over the loss of one child, does not discount parent’s love and appreciation of their living children.)
*Don’t make any comments which in any way suggest that the care given their child at home, in the emergency room or whatever was inadequate (parents are plagued by feelings of doubt and guilt without any help from their family and friends.
Wish List for Bereaved Parents
I wish my child hadn’t died, I wish I had him/her back.
I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that he was important to you also.
If I cry and get emotional when you talk about my child I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child and you have allowed me to share my grief, I thank you for both.
I wish you wouldn’t "kill" my child again by removing his/her pictures, or other remembrances from your home. Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me, I need you now more than ever.
I need diversions, so I do want to hear about you, but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favourite topic of the day.
I know you might pray for me often. I also know that my child’s death pains you, too. I wish you would let me know those things through a phone call, a card, note, or a real big hug.
I wish you wouldn’t expect my grief to be over in a short period of time. I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die. Grief is a life long process.
I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child and I will always grieve that she/he is dead.
I wish you wouldn’t expect me "not to think about it" or to "be happy". Neither will happen for a very long time, so don’t frustrate yourself.
I don’t want to have a "pity party", but I do wish you would let me grieve. I must hurt before I can heal.
I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.
When I say "I’m doing okay", I wish you could understand that I don’t "feel" okay and that I struggle daily.
I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.
Your advice to "take one day at a time" is excellent advice, however, a day is too much and too fast for me right now. I wish you could understand that I’m doing good to handle an hour at a time.
Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone. I wish you understood that grief changes people. When my child died, a big part of me died with him/her. I am not the same person I was before my child died and I will never be that person again.
I wish very much that you could understand – understand my loss and grief, my silence and my tears, my void and my pain. BUT…I pray daily that you will NEVER understand.
~ Author Unknown ~
How to Comfort Someone Whose Child Dies
by Susan Dunn
When a friend suffers the loss of a child, we don’t know how to comfort them. Our first thought is usually, “I don’t know what to say.” When a child is lost, we all suffer, and it’s particularly hard for other parents to deal with. “Friends would cross the street to avoid me,” one client told me. What to say and how to help the grieving parents is a challenge. I had first-hand experience with this when my son died several years ago. Let me share some thoughts from that perspective.
There are some things that aren’t helpful:
*Asking the person what you can do to help, or any question, is beyond their capacity. People devastated by grief can’t make the simplest decision and they still have to make burial arrangements, etc.
*Saying most of the things they say in movies – he’s in a better place, it was God’s will, your memories will comfort you, time will heal. They make no sense at the time. The person is trying to figure out something incomprehensible and doesn’t have space to fit in other ideas.
*Assuming the grief-stricken person needs to express their emotions. It’s all the person can do to contain the emotions. It’s self-protection to shut down and it’s necessary. Trying ... trying anything. The grieving person feels the emotional pull when they’re already on their last nerve and have nothing to give ... this person is trying to make me feel better, make me
cry, make me explain something. It’s a fragile state.
*Thinking the grieving person needs to do something. To the grieving person, it’s pressure, it makes absolutely no sense and often it isn’t ‘needed’ anyway. “You must eat something,” elicits “Why?” You can’t imagine how you’re bouncing pebbles off a distant planet.
*Words, I’m sorry to say, really aren’t of much use. References to other deaths. It’s just a time not to do that, like sending a book about coping with the death of a child. The person needs not to be a part of a group –widows who’ve lost husbands, mothers who’ve lost children ... It needs to stand alone.
What, then, can you do? Here are some of the things that helped me through. I can’t say they comforted me, as for a time there was no way to comfort me and I guess that’s a point to be made. You don’t even want to be comforted. What you want is your child back. My younger sister came to the Memorial Service and just made small talk. When she left, to go back home, she shook her head and said, “Oh Susan.” She left a tape by Ian Tyson on my bedside table ... rock with me Jesus help me bear this heavy load, don’t let her slip, not let her slide … all cowboys cross the Great Divide.
After the dinner after the Service, folks came back to my house. My niece sat beside me and stroked my hair while she talked with everyone, so I didn’t have to. A colleague at work met me coming out of the elevator my first day back to work. He looked up, then looked down with tears in his eyes and said, “I don’t know what to say,”and walked away with his shoulders bent. He had a son the same age as mine. It was thoughtful of him not to stick around and have me feel the need to comfort him. My friend who said, “Give me a list of people to call. I’ll tell them for you.” My boss said, when I returned to work, “The only reason I’m letting you be here is that it’s maybe slightly better than being home.” He gave me little things to do, to occupy my mind, but nothing requiring judgment. My twin sister called me every 6 weeks and said she was flying out for a visit. (Didn’t ask, said.) She would show up at the house and just putter ... cook, clean, garden ... She didn’t disturb me. When she answered the phone when I was napping, I heard her say, “She’s seeking the mercy of sleep.” My friend who wrote, “From now on, for me, every tree will be missing a leaf.” My son’s friend who told me, when she heard about it, “That’s really [expletive].” Between visits,
my sister sent me homemade chocolate chip cookies, something symbolic between the two of us. Mother ... home ... happier times. They arrived in shoe boxes,wrapped in plain brown paper. It’s a time to be basic. The people who talked about how wonderful my son was, only at a distance ... by email, or letters. The friend who gave me a gift certificate for 10 massages.
In the acute state of grief, the person can’t think, and there’s no emotional ....... What isn’t occupied by grief, is occupied by anger, which the person is trying not to vent against an innocent person. Just be around them, lovingly. Words aren’t absorbed.
There’s authenticity in saying “I don’t know what to say,” when you don’t. Avoid trying to pull their emotions out, or to put yours on them. Don’t make any cognitive or emotional demands. If you can, remove cognitive tasks – tell them you’re picking them up for dinner at Chili’s, Tuesday at 6 and to wear jeans. A gentle touch means a lot. Accept how they’re being at the time. Understand that for them to respond is asking them for energy they don’t have. Even the most gracious of us are hard-grieving, coaching, put to be gracious at such a time.
30 Quotes About Loss
Quotes from a good book: After the Death of a Child - Living with Loss Through the Years (by Ann K Finkbeiner)
1. "My life was a story I had been writing and now I knew the story was out of my hands."
2. "I thought that life was a bargain I made: you get an interesting, pretty world, you pay with death. But I had thought, my own death, not TC's. I've paid a fortune for some dime-store junk."
3. "Grief researchers have a mild obsession with how people recover; the reason is that grief researchers are usually in the helping professions, and people whose childen die often need help."
4. "What was a big deal, however, was guilt."
5. "...a child's death is disorienting."
6. "......letting go of a child is impossible".
7. "Shock is probably the body's kindness, the time to realise the facts slowly, to ease into the pain."
8. "I was in a daze....reality was gradually, gradually setting in."
9. "With reality comes pain and the pain, when it comes, is stunning."
10. "I can remember, within days, being in a shower and thought, 'My God, this pain is all over my body, from my head to my toes.' You just couldn't understand it, it was something you just couldn't understand. Your whole body is in pain. Not just here in your heart."
11. "Searching behaviour is normal for a while for any bereaved person, not just for parents. But parents seem to have extra reason for searching. All along they expected to die before their children, and this expectation runs deep. Parents dying is the natural order of the world. A world in which you are alive and your child is not feels unnatural. Your child isn't here so you shouldn't be...you feel "out of place". You're still here so the child must be too; and so....you search."
12. "You have two choices: either kill yourself or just keep going on day to day. Early in their grief....(they) didn't so much choose to live; they just didn't choose to die."
13. "Its easier as time goes on, not because it goes away but because you yourself learn to do things to help you get through the bad times."
14. "I was like a fish on dry land, no water in sight and the only alternative was to grow lungs and legs."
15. "The general change moves from numbness and shock to intense pain and longing to despair (which includes depression, anger, restlessness, irritability, guilt and sadness)."
16. "The word "recovery", if it means returning unscathed to normal life, is meaningless."
17. "Neither researchers nor parents believe that grief ends."
18. "PARENTING IS A PERMANENT CHANGE IN THE INDIVIDUAL. A PERSON NEVER GETS OVER BEING A PARENT. PARENTAL BREAVEMENT IS ALSO A PERMANENT CONDITION."
19. "There's still pain, its just not as intense. Some days I still feel a sinking feeling in the pit of my stomach, or a weight on my chest."
20. "The mother takes the death harder, the father doesn't cry and doesn't talk, and the couple argues about the whole thing. Common wisdom says that the deaths of children are harder on mothers than on fathers. It also says that those deaths are hard enough on both parents that marriages often break up. Common wisdom usually contains some truth, if only because people believe it and act accordingly."
21. "The fathers to whom I talked are, like the mothers, at the limits of their capacity to take pain."
22. "I don't know what its like to look across the dinner table and see someone else hurt to the limits of his capacity to be hurt and I'm glad I don't; it must be a depressing sight."
23. "The divorce rate among bereaved parents is more talked about than understood."
24. "Why no-one agrees on the simple number, the rate of divorce among bereaved parents, is a mystery."
25. "No-one can know exactly what the other feels. But in truth, all couples grieve separately."
26. "When a child dies, both parents must grieve in their own ways, wrote Klass, for the death of a child is a matter for the self in its solitude."
27. (Quote from a father) - "I was on pins and needles for a while because her tact and diplomacy went right out the window. It was just as if she cut people right off at the ankles. She still does it to a certain extent but now I understand it."
28. (Quote from a mother) - "We've each developed some other people that we can count on too.....you can't expect your husband to be supportive to you, he's too busy grieving himself."
29. "Every couple had a period of not being able to get or give the necessary attention. The couples that stayed together....asked other people for support....they tolerated each other's differences."
30. (Quote from a father) - "You just aren't with me when I cry. You're not with me when I have to leave the office or when I have to stop the car because I can't see."
The Grieving Person's Bill of Rights
Though you should reach out to others as you do the work of mourning, you should not feel obligated to accept the unhelpful responses you may receive from some people. You are the one who is grieving and as such, you have certain "rights" no one should try to take away from you.
The following list is intended both to empower you to heal and to decide how others can and cannot help. This is not to discourage you from reaching out to others for help, but rather to assist you in distinguishing useful responses from hurtful ones.
1. You have the right to experience your own unique grief: No one else will grieve in exactly the same way you do. So, when you turn to others for help, don't allow them to tell you what you should and shouldn't be feeling.
2. You have the right to talk about your grief: Talking about your grief will help you heal. Seek out others who will allow you to talk as much as you want, as often as you want, about your grief.
3. You have the right to feel a multitude of emotions: Confusion, disorientation, fear, guilt, and relief are just a few of the emotions you might feel as part of your grief journey. Others may tell you that feeling angry, for example, is wrong. Don't take these judgemental responses to heart. Instead, find listeners who will accept your feelings without condition.
4. You have the right to be tolerant of your physical and emotional limits: Your feelings of loss and sadness will probably leave you feeling fatigued. Respect what your body and mind are telling you. Get daily rest. Eat balanced meals. And don't allow others to push you into doing things you don't feel ready to do.
5. You have the right to experience grief "attacks": Sometimes, out of nowhere, a powerful surge of grief may overcome you. This can be frightening, but is normal and natural. Find someone who understands and will let you talk it out.
6. You have the right to make use of ritual: The funeral ritual does more than acknowledge the death of someone loeved. It helps provide you with the support of caring people. More importantly, the funeral is a way for you to mourn. If others tell you that rituals such as these are silly or unnecessary, don't listen.
7. You have the right to embrace your spirituality: If faith is a part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you feel angry at God, find someone to talk with who won't be critical of your feelings of hurt and abandonment.
8. You have the right to search for meaning: You may find yourself asking: "Why did s/he die?" or Why this way? Why now? Some of your questions may have answers, but some may not. And watch out for the cliched responses some people may give you. Comments like, "It was God's Will" or "Think of what you have to be thankful for" are not helpful and you do not have to accept them.
9. You have the right to treasure your memories: Memories are one of the best legacies that exist after the death of someone loved. You will always remember. Instead of ignoring memories, find others with whom you can share them.
10. You have the right to move toward your grief and heal: Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself and avoid people who are impatient and intolerant with you. Neither you nor those around you must forget that the death of someone loved changes your life forever.
"How to Reach Out for Help When You are Grieving" Dr. Alan Wolfelt.
Grief
Grief is the pain that results from any significant loss, especially the death of a loved one. Grief and mourning (the act of grieving) are normal, not something to avoid (though, heaven knows, we wish we could), nor illnesses to cure. Grief then, is the inevitable cost paid for living and loving.
When a loved one dies, grief is nearly always influenced by factors in addition to the loss of the person who died. Previous losses and related grief may reemerge and add to the pain. There are usually changes in the survivor's role in life, financial status and living arrangements. So grief is related to the death and to the consequences of the death.
Characteristics and Process of Grief
Grief is experienced globally; with emotional/psychological, spiritual and physical pain. One would expect sadness and grief after a loved one dies, but often the depth and encompassing nature of the pain of grief is shocking: Grief impacts all areas of life and living. We usually view grief as the response to the death or loss of a person loved in the conventional sense of warm, loving and reciprocated feelings. However, grief or related feelings are experienced when the relationship was characterized primarily by anger, rejection, or other negative emotion. Grief after death is felt not just for a person and love; but for love unexpressed, anger unresolved, or a relationship unfulfilled. This paragraph may be worth reading again.
The emotional/psychological manifestations of grief include sadness, guilt and anger. The sadness is profound and often includes aspects of depression. There is intense yearning for the deceased and the life that was shared with him or her. Again and again there is the shock-like realization that the loss is permanent and all the tomorrows will be without the deceased. Sadness comes in waves of despair and crying. There are times when the bereaved person cries and groans uncontrollably.
Of course I knew it would be painful after she died, but I was surprised at how deeply it hurt. I remember telling a friend that I didn't think I would ever be okay again. My wise friend just nodded in acknowledgment of what I said. Eventually I was okay again, but it was a long sad time.
The sadness is expected, but guilt may come as a surprise. Suddenly, when it is too late to do anything about them, all the lost opportunities of the relationship come into sharp focus. Some survivors blame themselves for what happened, "Its all my fault. If only I had . . ." Even more surprising and distressing to some is the anger at the person who died. For many people, it feels "wrong" to be angry at someone who died. Nevertheless, anger is an almost universal (though often denied) response to a loved one dying. "How could he do this to me! It's not fair!" Regardless of how much guilt and/or anger is experienced, however, sadness is usually the most powerful and enduring feeling. There are countless other emotional/psychological responses to grief. Among them are:
Numbness or denial is common and pervasive. "This didn't happen. It's not happening. Maybe I can do something that can change it." In the many attempts by theoreticians to conceptualize grief, the first "stage" is usually numbness or denial. And in fact, the first response to a terrible event is often denial. However, some form of denial (of what happened or what is felt about what happened) often continues intermittently well past the beginning of grief.
Ambivalence is not only common, but normal. Some people feel obligated to feel only love and sadness, but the fact is, it is common to feel love and anger at the same time toward the same person. We may even feel love and hate at the same time. Of course, many people have the idea that one shouldn't hate - but sometimes and in some ways, it is normal to have feelings that can only be accurately described as hate.
Severe anxiety or nervousness is also common and normal. Anxiety may be experienced as pervasive feelings of dread, nervousness, apprehension, or tension. Some people feel like they are losing control; and if control is ever lost, they feel they will never regain it. Tears come with little or no provocation. There may be increased desire for prescription or other mind-altering substances.
Changes in behavior and relationships may range from an inability to perform even the most basic activities of daily living; to dragging through daily life; to restless, disorganized behavior, including a kind of hopeless searching for what was lost. Relationships are dissatisfying and seem like more trouble than they are worth. Sometimes family conflict occurs or worsens. Developing new relationships seems out of the question. Who could ever understand this much sadness? Life loses its meaning and satisfaction without the lost person and there does not seem to be any hope of a new life to which the bereaved individual can turn. This inability to relate to others, coupled with loss of meaning is a major factor in the development of despair or hopelessness. There are people who prey (usually sex or money) on people who are bereaved. Be wary of any relationship that involves sex or money.
Disturbing thoughts/experiences may include hallucinations or a strong sense of the presence of the deceased. These may cause great discomfort and the feeling that the bereaved person is losing his or her mind. In the vast majority of cases, these perceptions of presence decrease over time and unless threatening or abusive, are not generally considered abnormal. Angry feeling about or toward the person who died are common - and distressing.
Grief often affects all aspects of the spiritual life of the bereaved. Without the deceased, life may lose much of its meaning. There may be little perceived meaning in the suffering of the person who died and the pain of survivors. Hope may have been destroyed in the course of the illness; and the future may seem without hope. Relatedness to God may seem impossible. The question arises, "What kind of God would cause this kind, gentle person . . . this child . . . anyone . . . to suffer like this?" Prayers seem empty. Church feels awkward. God seems far far away. Transcendence seems impossible.
Physical manifestations of grief commonly include fatigue, insomnia, anorexia, feelings of choking, shortness of breath, tightness in the chest, menstrual irregularities and gastrointestinal disturbances. Bereaved persons tend to frequently seek medical attention for vague symptoms such as chest discomfort or abdominal pain. While some physical complaints may seem to have no physiologic basis, there is a clear link between grief and increased vulnerability to physical and mental illness, especially heart disease and depression.
There are certain times when the mourner is most vulnerable to despair. These commonly include (but are not limited to):
• A few days to a week after the funeral when suddenly the support seems to vanish. Relatives and friends go home or back to their jobs and the mourner is left to his or her own devices.
• Holidays, birthdays, anniversaries and other significant times are often very difficult. The degree of happiness brought by the special time in the past may now be reversed with the same special time bringing corresponding unhappiness.
• The first anniversary of the death is usually very painful. Subsequent anniversaries are also difficult, but may also show the survivor that he or she is doing better.
Complicated Grief
As with any other human behavior or experience, grief and mourning are sometimes carried to extremes in behavior or length - "complicated grief." What constitutes extremes in grief is subject to debate and influenced by culture, who died, the circumstances of the death and other factors. Some experts view mourning that lasts beyond a year as extreme, while others view mourning as normally lasting at least a year. In a sudden traumatic death such as by murder or suicide; or when a child dies, grief may last longer and be more incapacitating. What is normal, then, is not well-defined and varies according to many factors.
The Tasks of Bereavement
In working with mourners, therapists, nurses, ministers and others have identified some "tasks of bereavement." These tasks can be used as a kind of checklist to identify blocks in the mourning process. The tasks are not, however, a checklist that one can mark off one by one and then be done with grief! Grief is more than that. Some of the tasks are ongoing and all are usually addressed more than once. When one works on or addresses a particular task, one's understanding of self, the deceased and the relationship usually deepens. The tasks of bereavement include telling the "death story;" expressing and accepting the sadness; expressing and accepting guilt, anger, and other negatively perceived feelings; reviewing the relationship with the deceased; exploring possibilities in life after the death, including, for some, finding new relationships; understanding common processes and problems in grief; and being understood or accepted by others. These are discussed one by one below.
Telling the "Death Story"
Those who gave care and/or were there when the death occurred have a need to tell and retell in as much detail as possible what happened and how they reacted to what happened. In most cases, these stories are an attempt to make it real and understand what happened. Often there is a sense of disbelief that what happened actually happened. In addition to telling the story, some find that they reach a deeper understanding of what happened by writing (and usually rewriting) the story.
Expressing and Accepting the Sadness
It might seem obvious that expressing and accepting the sadness of grief is part of mourning. Not so. Many people, men in particular, feel that they should not express sad feelings beyond, perhaps, acknowledging that some sadness exists. Some people are reluctant to express their feelings because they fear if they ever start, they will be unable to stop. Some families have rules about not expressing feelings, such as "We don't wallow in misery." In other cases, a mourner may be consistently in the role of being strong and helping others to the extent of not helping self, "I have to be strong for her/him/them." Another very common way that feelings are inhibited is through the "comfort" that insists that everything is or will be fine. This alleged comfort comes from friends, family members and even in funerals that "celebrate" religious beliefs or life rather than acknowledge the pain of life and death. To mourn, it is normal and necessary to express and gradually, over time, to accept the deep sadness of grief. Note that the focus here is more on enduring than resolving or working through the sadness. TV newscasters send the consistent message that "the healing has begun." So now its time to move on. Not likely!
Expressing and Accepting Guilt or Anger or Other Feelings Perceived as Negative
People and their relationships are not perfect. That seems obvious, but often people and relationships are idealized after death. Moreover, many bereaved persons see themselves as at fault in some aspect of the relationship or the care. "If only I had . . . " then he or she wouldn't have died or would have lived better, etc. etc. Of course regrets are common in relationships. But in grief there often is excessive guilt. Acknowledging and expressing this guilt is sometimes complicated by the bereaved person feeling great shame over his or her perceived shortcomings that, to the guilt-ridden person, seem completely unique.
Of course whatever the perceived shortcomings might be, they are not unique. Talking about the guilt with others is probably the most helpful action one can take to relieve it. Just saying out loud what one feels guilty about can begin the process of putting the feelings in perspective and eventually letting go. Some people find that service to others is helpful in dealing with guilty feelings.
Guilt and anger are sometimes connected. The bereaved person is angry at (the idealized) deceased and feels guilty about the anger. Anger may also be denied or suppressed; or turned inwards to self and ultimately experienced as depression; or be chronically expressed toward others. In any case, anger felt toward the person who died is often directed to any other target. But the fact is, it is normal and usual to feel angry about a loved one dying. It is not wrong to have such feelings; it is just human.
To resolve anger it is first necessary to acknowledge and express it. A major block to expressing the anger is the unrealistic idealization of the deceased and the relationship. It may thus be necessary to take a realistic look at the person and the relationship. He or she was not perfect and neither was the relationship. Looking realistically at the relationship allows one to look realistically at the anger; and then at what lies beneath the anger. Beneath the anger we often find feelings of abandonment, of devastation, of helplessness and hopelessness. There is no magic thing one can do to deal with these. Recognize them, accept them, and gradually, in working through the grief, the "negative" feelings slip slowly away.
Reviewing the Relationship With the Deceased
Too often mourning focuses on the last or more difficult days of the relationship. But there was more than that. In looking at all the days of the relationship with the deceased, one realizes the fullness of the relationship, not just the painful last. This is a task that is both sad and enriching; and necessary to grieving.
Look as far back as the early days of the relationship. For spouses or life partners, for example, one might recall meeting, the courtship, early hopes, disappointments, successes, friends, children, and all else that makes up a shared life. For children (adult or child) of a parent who died, looking back to early as well as later remembrances is important. For anyone, it is important to explore what would have been or what was hoped for had the death not occurred.
Exploring Possibilities in Life After the Death
Looking to the future is a task that usually emerges later in the grief process. Early in the process of grief it may seem like the future holds only the sadness and pain of grief. But as the sadness is endured and worked through, there is a growing awareness that there may be hope for a life in the future. How long this takes varies; it is a gradual process and most people do not at first notice that it is happening. Sometimes the awareness that there may be life (and perhaps even happiness) seems like a betrayal of the deceased. That, too, is part of the process and gradually passes. Rushing into new possibilities is a relatively common mistake. Emotional, sexual and/or financial commitments or decisions must be approached with extreme caution.
Exploring future possibilities is complicated by the loss of the past. Among adult couples, a death often changes friendships. Not only is the survivor impacted by the loss, and thus less socially able, but the dynamics of couples relationships are also radically changed. Simply put, some relationships no longer work. Bereavement groups are especially helpful in showing that life and relationships are possible.
Understanding Common Processes and Problems in Grief
In times past, grief was often a community experience and people knew how devastating it can be. Now, except for the few days surrounding the death and funeral, grief is often a private experience, and as families and communities, we know less about it than before. The power and duration of grief and its overwhelming emotions are a terrible surprise for many. Knowing what is common or expected in grief helps people understand that they are not abnormal or different. Knowing what is common or expected does not change or make grief easier. It only tells the mourner that he or she is grieving, not losing his or her mind.
Being Understood or Accepted by Others
The emotion and process of grief, along with the way we live, often results in isolation. Isolation, to some extent is a natural part of mourning. But the isolation should be that of the mourner, not of the misunderstood. Family and other sources of support are better able to help when they, too, understand what happens in grief. It is not that they can necessarily change what happens; only that they understand.
Finally
Grief is a terrible and universal experience that affects all aspects of life. It cannot be understood except by direct personal experience. There is no "answer" to grief that can remove the pain like an antibiotic removes an infection. The best we can do is live in it and work to understand it and our relationship with who was lost. Ultimately we look to where humans have always looked for help: family, community, self and God. We do not always find what we were looking for at these sources. But we keep on because that too is what we, as humans, have always done. And we get better.
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