“I thought I could describe a state; make a map of sorrow. Sorrow, however, turns out to be not a state but a process.”
CS Lewis – A Grief Observed
Many people say that during the process of caring for a loved-one who is dying there is not just one death at “the end” but there are many small losses along the way. From the moment we suspect cancer or hear the doctor–no matter how skilled–break the bad news of a terminal diagnosis–we begin to grieve.
“The death itself was the culmination of hundreds of small deaths along the way”
Grief is a word that describes how the death of a loved-one affects us personally. It is an ever-changing experience that impacts on our feelings, our thinking, our behaviour–and even the way we see the world. Many people describe intense physical pain such as “numbness”; being “ice-cold”; a feeling of “choking” and some experience such turmoil that they feel as if they too will die.
Sometimes there is a sense of un-reality. One mother described how after the death of her daughter she felt she was “in a silent glass cage,” and completely separated from the people around her. Other people express surprise that “the world keeps on turning” and that “everyone else can get on with their lives” after the loss of a loved-one.
Death is the most powerful stressor in everyday life, causing both somatic and emotional distress in virtually everyone closely tied with the person who has died (Holmes T, Rahe R, Journal of Psychosom Res.1967;11(2): 213).
There are many things that will affect your experience of grief: These include how close you are to the person who died; whether the death was sudden or expected; whether you had unresolved issues in your relationship with the deceased; and whether your loved-one was young or elderly for example. Many books suggest that the death of an older person when it is “their time” is less traumatic than the death of a younger person “before their time”: This has not been what I have observed however: Elderly widows and widowers, as well as sons and daughters of aged parents often experience intense anguish and loss. The death of an aged person may cause just as much sorrow, loneliness and turmoil as anyone else. Despite this, most people find that as the weeks turn into months, the sense of grief eases and it is possible to integrate the experience of grief into a new life and new future.
“most people find that as the weeks turn into months, the sense of grief eases and it is possible to integrate the experience of grief into a new life and new future”
The Australian Palliative Care Knowledge Network (CareSearch) has a very good page on bereavement and grief. The authors of this page list many of the normal experiences that can occur after the loss of a loved-one–and I have added some others, too:
- Emotional ups and downs
- low mood
- Anxiety (Being afraid of going places or doing things that remind you of your loved-one: this can lead to withdrawal from many activities)
- Guilt (thinking you didn’t love well enough or that you should have “tried harder” to care for your loved one before they died. Sometimes people feel guilty about not being a good wife or father or mother etc to the family who are still alive. Guilt is a common feeling and it is important to talk to your GP, pastoral carer, or counsellor if these feelings are constantly troubling you)
- Loss of pleasure (not enjoying things you used to like such as gardening or cooking)
- Shock/ numbness/ “emptiness”
- A sense of purposelessness
- Relief–it is normal to feel a sense of relief that the process and pain of dying is over: Some people think this is “wrong” and feel guilty that this means they didn’t care for their loved-one well enough.
- Changes to thought processes
- Thinking all the time about the person who has died
- A sense that the dead person is still about (sometimes even seeing fleeting “visions” of the loved one, or hearing their voice)
- Denial–not being able to accept the loved one has died and is never coming back
- Poor memory/ forgetfulness
- Over or under activity (wanting to sleep all the time or alternatively not being able to stop doing things to keep busy)
- Social withdrawal–being afraid of meeting people and not wanting to spent time with friends or family
- Agitation/ restlessness/ being irritable
- Physical feelings/ effects
- Loss of appetite
- Sleep disturbances–lying awake thinking/ having trouble getting to sleep/ nightmares
- Frequent illness such as colds and coughs
- Weight loss or gain
- Tension headaches
- Changed perception–colours don’t seem as bright and music you once liked may sound jarring and irritating
A “diary” of “normal” grief
(Adapted from Symptomatology and management of acute grief: Lindemann E, Am J Psychiatry. 1944; 101:141)
The early weeks
”Going through the motions”, taking care of funeral arrangements, greeting relatives and friends, and tending to financial matters.
The following weeks
Shock and numbness, intense feelings of sadness, yearning for the loved-one who has died, anxiety about the future, disorganization, and emptiness.
“Searching behaviours” including imagining you are seeing and hearing the dead person: This can be very normal, but people worry that are “going crazy”. One father described the urge to follow a white car which was the same make as his dead daughter’s car– “I thought it might be her”, he said, “but of course I knew deep inside it wasn’t her”.
Despair accompanies the realization the loved-one will not return. Sleeplessness, appetite disturbances, agitation, chest tightness, sighing, exhaustion, and other physical complaints are experienced in the months after a death. It is common to experience physical symptoms similar to the symptoms of the deceased.
People often replay and remember details about the relationship with the deceased. It is very common to go over events leading up to the death: Sometimes these memories can feel a bit “stuck”–like a DVD that can’t be switched off. These memories can be mixed with sadness and guilt feelings over regrets and missed opportunities.
Anger at the person for dying, at God, and at the medical team is also common. It’s ok to ask to talk to your GP or to the medical team if you have some questions about the death. Don’t forget that anger at God is a common feeling and you don’t need to feel ashamed: Pastoral care workers/ chaplains and others understand these feelings and talking about things can often help.
Grief comes in waves that are often precipitated by reminders of the dead person.
Feelings of pleasure are often experienced as a betrayal of the person who has died: Some people say they don’t want to enjoy themselves by eating good food or mixing with friends and if they do they feel guilty about beginning to enjoy life without the loved-one.
Six months and beyond
By six months, the “raw edge” has usually gone from the grief although there are still “waves” of sorrow that might come at unexpected times. The bereaved person is gradually able to remember the dead person without being overwhelmed. By this time people are able to work or study again, and able to have a relatively “normal” family life. A sense of purpose returns as the feelings of hopelessness and helplessness fade. By this time, people can make plans for the future and enjoy making new friendships as different possibilities open up.
One year later
You will notice that you may be stressed and anxious in the weeks leading up to the “first anniversary” of the death of your loved-one. A widow described; “feeling fine and then suddenly the wheels fell off and I was a mess–that first year was the hardest”.
Expect to feel quite upset at other special occasions too–such as Christmas, New Years Eve and birthdays. Think about making a special trip to the cemetery with a close friend or family at this time.
“One must give ones self up to the risks and dangers of this world, allow ones self to be engulfed and used up. Otherwise one ends up as though dead in trying to avoid life and death.”Ernest Becker – “The Denial of Death”
Recognising “abnormal” grief in yourself or another person
Grief is a normal, healthy (although difficult) process: It is not a medical condition or a mental illness. Some peoples’ experience of grief can become so complex and distorted that it is no longer considered “healthy”. Doctors who are aware of this talk about “complicated grief”. This means that emotional and physical response to the death is so complicated that healthy grieving is derailed. Grieving is a process that has a purpose: While we might not recognise it, grieving is the way our body, mind and spirit learn to live again after the death of a friend. The inability to grieve in a way that leads to a positive outcome is worth considering as a medical condition.
“Complicated grief” is marked by:
- Obsessive thinking about the death or the loved one
- Ongoing bitterness
- Inability to accept the circumstances of the death or the finality of the death
- Ongoing avoidance of painful memories or of people or places who might trigger memories
This experience is not healthy and stops the body, mind and spirit from growing onto a new future beyond the death. If this continues, people become socially withdrawn, pre-occupied with death, sometimes suicidal, and they may develop clinical depression (a “major depressive disorder”)
Rates of depression during the first year after the loss of a spouse (15 to 35%) are four to nine times higher than the rate in the general population, and suicide rates after loss of a spouse are increased, especially in older men during the first year.
It can be difficult for doctors to distinguish between “normal grief” and depression (Prigerson HG, Jacobs SC. Caring for bereaved patients: “all the doctors just suddenly go.” JAMA. 2001;286:1369-1376).
If you think you might be suffering from depression it is important to find a GP (or ask for a referral to a clinical psychologist) who is familiar with “complicated grief”, depression, and the grieving process. If you cannot afford to see a clinical psychologist, ask your GP for a “Mental Health Care Plan” which gives you access to 6 to 12 sessions with a psychologist or counsellor which are subsidised by Medicare.
Some clues that you might be experiencing depression rather than just grief might be a generalized feelings of hopelessness, helplessness, worthlessness, and guilt, as well as persistence of the initial and severe symptoms of early grief beyond 5 to 6 months.
Doctors who suspect “complicated grief” can use the “Complicated Grief Inventory” as a screening check at about 6 months after the death of the patient’s loved one. Click on the following link for a PDF version: Identifying Complicated Grief
There is treatment available including a very helpful and healing form of counselling called “Complicated Grief Treatment”.
Complicated Grief Treatment
Treatment aims to facilitate understanding of the loss and its impact on the survivor’s sense of self (identity) and sense of the future
Focus is also on mastering concrete tasks (eg, finances, cooking) that were carried out by the deceased and that can lead to a new sense of competence and independence
Encouragement to develop new routines, new relationships, and to practice good self-care (diet, exercise, sleep, etc) is also helpful