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The Grieving Process and Bereavement Support
All the passages below are taken from the book, “Leaving This Life With Hospice: Stories of Wonder and Hope” by Margaret Ledger. It was published in 2005.
Everyone is unique and is going to grieve in his own way and in his own time. There are models of grief, which can be very helpful to survivors. It is quite a relief and a comfort to find your symptoms and experiences are relatively normal. Sometimes a bereaved person needs to get more help, as his losses are overwhelming, which is frequently true for people have who have experienced multiple losses, or who have extenuating circumstances.
During my training in grief counseling, I listened to a woman talk about her very painful experience. The tension in the room was palpable, and one person asked a question about tools and techniques, most probably to relieve their own tension. The vehement response from the woman in pain was, “I just needed a real human being who would listen!” I knew then, I could do this job. Family and friends also can be what the bereaved person needs, if they are willing to listen, to be truly present, and to share her pain for a while.
When the impending death is acknowledged ahead of time, then loved ones may grieve ahead of the death. I spoke to one woman who said that she is no longer afraid of death, that the process of being there with her father as he was dying was truly beautiful. Loved ones who have had the opportunity to stand witness in this way, are truly enriched. They will grieve their loss, but their lives have already been transformed, and they will move forward with the love and the happy memories from that relationship.
Dr Ross’s model of loss describes the process of grief quite well. Initially someone may be in shock, and denial, unable to believe his loved one is really dead and won’t be returning. This is a way of protecting himself from a reality he isn’t ready to face. A woman may organize a reception after her husband’s funeral and company may say, “Look how well she is doing, she’s not breaking down.” She may not be doing well at all; she may just be numb, functioning on automatic pilot, and going through the customary motions of living. The task, in this phase of grief, is to accept the death and to know that the person will not come back.
In the second phase, the bereaved does understand only too well that her loved one will not return, and she can feel all sorts of emotions intensely. She may feel sadness, loneliness, guilt, anger and a host of other emotions. Her task now is to both let herself feel her feelings, and to take care of herself. This will mean asking for help, too.
Then depression can hit very hard. People describe how they feel. They say, they can’t understand how the world goes on normally, when the bottom has just fallen out of their world. They may not even be able to get out of bed in the morning and get dressed.
Eventually the survivors come full circle to acceptance of the death, and slowly begin to have renewed energy to reinvest in life again. No one knows how much time it will take. I have seen a woman in denial for a year, I have seen a woman feeling intense emotions 4 years later, and I have seen a woman, who suffered her loss intensely, reinvesting in life after months not years.
This model is not quite so linear as it sounds. The bereaved can go through all stages in a cycle, from shock to acceptance in a day, and repeat the whole cycle the next day. They can feel they move forward for 3 days, then slide back and feel terrible again.
I always encourage bereaved persons to see their doctor. They may need medication for a short period to help them get enough sleep, and if they get terribly depressed, they may also need medication to give them a base level they won’t fall below. Survivors having symptoms of ailments, may have put their own needs on hold for a long time while caring for their loved one, or may be experiencing symptoms that have more to do with their emotional state.
Processing grief can look very different. One person may cry and cry, another may be quiet and solitary, while another may continue as normal wondering why everything seems to go wrong around them.
I do believe that unresolved grief causing an enormous number of problems and issues. I know a woman who was in a car crash shortly after her husband died. I know a man who got violent and attacked a doctor for “letting” his wife die. I know a woman who lost her job shortly after her mother died. I know a woman who developed severe asthma after her husband died. The list goes on.
Occasionally I meet a person who can change when I point out the connection between loss and their physical state. I was talking on the phone one day with a woman and I could hear the difficulty she was having breathing. She told me her lung problems started right after her husband’s death. I said, “Do you know the Taoists believe that we hold grief in our lungs?” She was silent for a moment, but when she started talking, she was breathing much more easily. I’m not sure which one of us was the more surprised!
So grief takes many forms, depending on the bereaved person himself and on the nature of the relationship that he had with the deceased.
Bereavement support from hospice
One of the services that hospice provides is on-going support to the family who survives the person who was care for by hospice. That is true whether the person died at home, in a hospice residence or in a nursing home. The coverage lasts through the first year’s anniversary. The exact nature of support will vary with the individual hospice, but in general will include: one or more visits, phone calls, mailings, support groups, and a memorial service. Accreditation for hospice includes a requirement that hospices maintain contact with the survivors and make help available. The balance of professional and volunteer help may vary, and hospices develop programs to meet the needs of their local communities.
The bereavement coordinator participates in the hospice team meetings, so is well aware of the history of the patient under hospice care, and of the family situation. The social worker, spiritual coordinator and nurse have shared the step-by-step adjustments the family was making, and the team discussed their concerns about the family’s ability to cope after the death occurs. Collectively the team decides how best to support them. The families themselves, though, make the decision about what support they will accept.
Within a few days of the death, the nurse will visit or call the survivor. Sometimes the social worker goes back to visit, too. As a bereavement coordinator, I call her between 7 and 10 days later. I aim to call when the visitors who came for the funeral have just left, and the bereaved is alone for the first time. The survivors have probably been extremely busy and overwhelmed with company, and have had little time to let the reality sink in. I offer to visit each family, but if the team thinks the family really needs help, I say I am coming, what time would suit you? More people decline than accept a visit, but quite a few let me call back a month later. I like to do this, because the bereaved person may still be numb after a week and think she is coping, but time can bring significant changes. So I go from month to month. When the person is feeling all right, she won’t want to spend time talking to me, and that is fine. Quite a few people would like me calling monthly for life, but I try to get each one to use other resources, so she is comfortable when I need to stop the hospice support 12 months after her loss.
When I go to visit, I am there to listen and to give guidance. I may shed a few tears with the griever if she cries, but every time I’ve visited, we have laughed together, too. I can confirm her process and support her decisions, let her know what’s normal and typical, and make suggestions of what might be helpful at this stage of her grief.
I do suggest going to a therapist, even weekly for a while, to anyone really struggling to deal with her loss, and who does not have really good support from family and friends.
If the family had a regular volunteer visiting to relieve the caretaker when the person was dying, I ask that volunteer to go visit the family again a few times. Volunteers frequently have become close to the family, helping at such a tough time in their life, so the family welcomes them back. I remember being very surprised at a party the family gave after the death of a mother, who they had supported for a long time. I seemed to be almost a guest of honor. I had spent time there as a volunteer, quietly sitting with the old lady each Saturday afternoon, and I hadn’t realized how much I was appreciated.
Suggestions pop into my head without any logical reason. I give the survivor the suggestion, often surprising us both, when it is spot on. I’ve suggested creating a memorial garden, or a specific short cut way of journaling ideas that were immediately accepted.
I really enjoy these visits. I know I can make a difference by accepting her sadness and loneliness, yet bringing in new hope of better times.
At my initial call at 7 to 10 days after the death, I offer to call again in 4 weeks. Most people will accept this offer, because neither of us knows how they will be feeling by them. I continue calling monthly if the survivor wants me to. So many of those calls are personally rewarding. A woman’s low monotone voice may just answer “Hello,” but when I tell them who it is, her voice will lift, “Oh Margaret! How are you?” There is nothing like making someone’s day! This enables me to keep in touch with far more people than I would ever have time to visit, and also to stay in touch with family members who are in different parts of the country.
Many times follow-up calls are made by specially trained hospice volunteers. We use a volunteer to call at 6 months, even if the survivor had said he was coping fine earlier, and didn’t feel need for close attention. They always seem to appreciate the volunteer’s interest and phone call. Some hospices have volunteers make calls on key anniversaries like birthdays and wedding anniversaries.
Hospices provide mailings to the bereaved families, which vary in the details, but follow much the same pattern as I follow. I send a bereavement card out within the first week, and a letter at 4 weeks with enclosures of a simple booklet, a list of therapists, a list of support groups and a bibliography. Four weeks seems to be about the right time. A bereaved person’s attention span tends to be so limited in those early days, that he may ignore or mislay mail.
Hospice volunteers do a great job of getting out subsequent mailings. We send a letter with enclosures at 3 months and at 6 months after the death, and a handwritten card at 9 months and 13 months. We also send information just before the holidays, and in the final card, to suggest ways to cope with holidays, and that first year anniversary. Sometimes a survivor will send a letter or card back to the volunteer to say how much he appreciated the card.
All hospices offer support groups to the bereaved family and friends of the deceased hospice patients. These support groups are available to the public at large, free of charge, as part of the hospice’s community service. In urban communities there will be sufficient numbers of people to run specialized groups, such as: death of a parent both for adults and children, death of a spouse, or death of a child. A number of organizations exist to support specific types of loss e.g. Compassionate Friends, for loss of a child, Young Widow and Widowers, Survivors of Suicide etc.
Usually these hospices provided groups, will be advertised in local newspapers and the hospice families will be notified by mail. Anyone looking for a group can call a local hospice number they find in the phone book.
The leader needs some training and experience, to run a group well. I do find if I can be present and in my heart, then the group seems to manage itself. Of course I go into the groups well prepared, but usually have to modify the plan dramatically to suit the group issues at the time. Support groups are not right for everyone. When each person is willing to be there for each other, to listen and contribute when it feels appropriate, then the group gains so much from each other, the leader is hardly needed. Some people may find it helpful to be there and listen without talking much at all. Some grievers are better served by a personal therapist, when they have so many issues, that they need to talk a full hour and have little ability to listen to others.
Many times I have been amazed to see the nature of the losses of people coming to an open general group. Some times the group has been comprised totally of women, sometimes totally of men, and sometimes each member has suffered the same type of loss. Each person’s situation and feelings provide insight for the others. The agenda seems to have been formulated elsewhere, unknown to us all, when we see the commonalities and contrasts in the people presenting themselves.
Hospices also provide an annual or bi-annual service of remembrance and celebration. Different hospices organize this in different ways, to meet the needs of their local community. Perhaps only 10 % of hospice families avail themselves of this program, but those who do attend are usually very appreciative.
Hospice personnel can also be called on to help in their community in times of loss. I have talked in schools, in senior centers, to church groups, and on cable TV in giving guidance on dealing with loss. Other hospices may do far more.
I have already shared some of the special experiences that bereaved people have described to me, close to the time of the actual death. These experiences can relieve some of their grief. Now they can believe in a connection to something beyond this life, and they can interpret the experience, as a sign that their loved one is fine, and they live on is some form we don’t understand. Those sorts of experiences seem to come to the people who are ready to face their loss and are open to receiving a message in that way.
Many times the bereaved will tell me that they feel the presence of their loved ones with them most of the time. Grief is not about letting go; it’s about finding ways to integrate your history, to take the ongoing love, and to take the happy memories with you into your future.
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