My preferred models of bereavement - Part Two

Irrespective of the models used, what has become obvious is the need for the staff to fulfil a 'gatekeeper’ role.

Firstly to simply ‘be there’ to help the child and the parents in an ‘as appropriate’ manner as possible.

Secondly to acknowledge that the parents were-,still are-, and always will be -, parents.

Inevitably in western society, the parents will gradually be excluded from routine or normal interaction as their family and relatives, friends and colleagues, who are grappling with their own emotional responses, shun them.

Parents often report that they feel as if they were in a psychotic state, as if they were dreaming- the so-called ‘phantom child’ syndrome.

This is of vital consideration. Westerners in particular tend to lead what has become known as “a narrative life”.

People assume that their life (and that of those they love) will always have a clear beginning, a middle part; and always at some indefinable point way off in the future, an ending. They believe that the pattern of their life will be more or less that of their parents and family; of their contemporaries or colleagues; of society in general.

It is implicit that they expect the quality of their life to be better than that of their family.

They believe that they can choose the script of their life;that they are the director and producer;that the film of their life will be a romantic comedy.

The idea of children ‘pre-deceasing’ them is simply not ‘normal’, not part of the mental videotape running in their heads - a videotape that feeds off of endless happy-ending media inputs particularly in this post-digital age.

Death is not a part of the (necessary) mythology of their life and their family, a mythology that we all of us construct, -one that makes sense of our lives if only to ourselves-, and from which very often, our personal and/or familial ritualistic behaviour develops.

When the child dies, the videotape slams to a stop. They are left looking at a blank screen with an ‘error’ message screaming through their minds and hearts.

What is so strange about this narrative life, is that it invariably has the support of a whole network of family, friends and significant others to sustain it; but the moment a child dies, then that support slips away as family and friends who believe that they don’t know how to respond, simply withdraw.

And so the parents are often abandoned by the doctors and nurses who feel like failures because the child has died; by their family; and indeed often feel abandoned by their God-“why my child?”.

There is of course no real answer to that question. Indeed there are only three absolute truths in bereavement care in the acute situation:-

1. It is never the right person
2. It is never the right time
3. It never makes sense

Bereavement counsellors often see the development of modern grief work has having three stages-the ‘Kubler Ross stage’/a post KR stage/an integrated stage, which is almost constantly under review.

The Kubler Ross model and its enhancements are good places to start from ; but we know so little about the individual response to grief that it may be counter-productive to try and apply a ‘one model fits all’ formula.

There are no absolute models or schemas ;there are only “guidebooks”.

The Four Tasks of Mourning that I like to use are those defined by Bowlby and Parkes.

They talk about :-

1. Numbness
2. Yearning
3. Despair & disorganisation
4. Reorganisation

The first task is to get the parents to accept the reality of the loss, to let them see their child, and to be open and honest in all of your dealings with them; be available, physically and emotionally; avoid prescribing drugs or suggesting alcohol to deaden the pain and anaesthetise their mind and spirit.

Secondly, they need to work through the pain of their grief.

Grief can make them feel physically ill and sick, and may present as a real pain-a “broken heart” is not a cliché.

And the pain and guilt and anger can and may last for a very long time, as may feelings of despair and alienation.There is of course a point at which the grief may become dysfunctional, and silence and denial are not cures.

Thirdly the parents need to adjust to an environment in which the child is missing/absent.

“Yes, his room and toys are still there, and yes you should/can/may clean and tidy it once a week, but the harsh reality is that he is not coming back”.

We need to support the parents with honesty and give them time, and allow them to play all the videotapes in their heads-the tapes of ‘what was’ and what they thought ‘would be’.

Fourthly, they need to emotionally relocate their child and “get on” with the rest of their life. What this means to me is that the parents start to make plans about future events such as going away for a holiday and making decisions relating to their careers.

With time, I would expect them to smile at the memories of their child as much as they become tearful; I would expect them to celebrate their child’s birthday and perhaps have a quiet remembrance on the anniversary of the death.

I would expect them never to forget their child, just not to remember him so often. And that will inevitably depend on their concept of “how much is enough’, as on any of mine as their counsellor.

The point of grief counselling is not to return the parents to a pre-grief state.

That is not physically possible. It is rather to get them to integrate the loss of their child into their daily life, and to help them move to another psychological place.

Members of the Johannesburg branch of The Compassionate Friends (an international self-help group) shared the following broad categories of bereavement with me : -

Those who are newly bereaved

Those who are “into their grief”

Those who are “well along in their grief”

And those who “are as resolved as they are likely to be”.

So here are no fixed external or objective markers to what is always an intensely personal and subjective experience;and it is implicitly non-judgemental.

This is the model that makes most sense to me. The various formulas and schemas and tables are really useful only to the counsellor who is trying to gauge if there is any movement in the grieving process; and to check that the parents are not “stuck” in a dysfunctional pattern. So they serve as a ‘common’ or shared point of reference around which to work.

I believe that the truth is that most bereaved parents never totally ‘recover’ from the death of their child, certainly not in the way that we ‘recover’ from the death of a partner or adult sibling, even a parent.