Link back to index.html
Caring for the Dying Person and Family
All the passages below are taken from Anthony Yeo’s book, “In the Shadow of Death,” published in 1994
One of the greatest needs of a dying person is to be cared for. Stricken with terminal illness and hospitalisation puts him in a dependency position, needing all the care and attention he can get. This is provided by hospital staff and efforts have been made in Singapore hospitals to provide as efficient and as human a service as possible.
No matter how human or efficient the hospital staff may be, it will not be sufficient for the dying person. There are many things that family members and friends can do to complement the care provided. Very often this enhances the human element in caring for the dying which is something appreciated by them.
The intention to care for the dying is commendable and should be encouraged. However, it might be useful to clarify what would be beneficial and relevant to the person. Sometimes we can care inappropriately, being a disturbance or irritation to the person rather than being helpful. We should avoid doing anything to add to the agony of the person. Our enthusiasm to reach out may be perceived as demeaning or irritating. We should try to be as benevolent as possible.
I have discovered that there is no way in which a person can be fully trained or equipped to care for the dying. No expert knowledge can fully prepare us to provide this care. This was my experience with Betty, and with many others I have tried to care for. I was often dumb-founded, lost for words and awkward in my responses. There were occasions when I was literally searching for responses that would meet the challenge of Betty's questions and needs.
I have been made aware that my professional training as a therapist has helped me in many situations. But that has to be supplemented by direct encounters with dying persons and their families. Ultimately, they have been my teachers in caring for the dying. Some of these lessons are worth sharing, with the hope that you will better understand how to care for those in need.
Dying people have all kinds of needs which we may be unfamiliar with. It is not easy to meet these needs, but we can at least be available. This may require that we be on call and provide whatever is needed or possible. Our presence itself will be a valuable resource even if we do nothing or say nothing. Just by being around to assist or provide company can be a positive experience.
Of course it is virtually impossible to be available all by ourselves. This is where family members may need to take turns or be rostered for this purpose. Friends who have the time can be enlisted as well. In this way, we do not exhaust ourselves or end up being ill while looking after the ill person.
Far more important than what we can do for the dying person is our attitude towards him. We need to be sensitive. This sensitivity is an essential attribute in caring as it enables us to enter into the mind of the person to sense what is needed. We will also be alert to any non-verbal communication, such as body language, silences, tone and volume of voice and any action on his part. All these constitute some form of communication which we must be able to sense when with the person.
One other way to heighten our sensitivity is to be observant. This involves paying attention to the person, being aware of mood changes and unexpressed concerns or needs. Of course it will not be possible to be very accurate in our interpretation of non-verbal communication, but at least we can be aware. It does not hurt to check out our impressions to be sure we are making the right connections.
In this sense, caring for dying persons does not begin by doing. It begins by being; being available and sensitive so that we will know what to do. No wonder someone has said that it is not knowing how to care that matters. It is knowing how we are offering ourselves that is important.
Human beings generally need the attention of their fellow humans. This need is sometimes accentuated in the dying person. His illness is causing him to lose contact and leave all human experience behind---something he wants to avoid at all cost. Even suicidal people are known to try to make contact before they kill themselves.
Being attentive often begins with listening. This may sound easy enough but it is something we find difficult to do as we think we must try to say something whenever we are with the person. There is a danger in allowing the urge to say something to predominate as we easily end up saying what is inappropriate, unhelpful or even hurtful.
I will always remember the words of the surgeon who attended to my wife when she was in hospital with a broken leg many years ago. He came into the room, gave her a cursory look-over and headed for the door saying, "Not to worry, not to worry. Everything will be fine." Well, everything did not turn out fine. The operation performed the following day was not altogether too successful and my wife had to be operated on again. There was certainly something for us to worry about at that time.
It would have been more useful if he had merely come into the room and asked how my wife was feeling. All he needed to do was to listen. That would have been more of a relief than to tell us not to worry.
This incident reminds me of the need to be careful with words. I would rather listen and restrain myself in the presence of the dying person and let my presence do the communicating. There is a way to provide attention to people without saying very much.
That is why I have a golden rule for myself in situations like this: "When I don't know what to say, don't say anything."
I find it useful to visit someone in hospital and just be there or try to find something I can do. I may be able to help the person be in a more comfortable position, assist with little things and make the surroundings a little more pleasant. I often ask if there is anything I can do or anything needed. This is my way of saying "I respect you and will try not to be overwhelming in my care for you. I will try to do what is relevant."
If I ever want to say anything, I try to rehearse my responses. I may even practise some lines to prepare myself if I wish to say something. For example, I try to avoid the standard line "How are you?" whenever I see the person. I am aware that this must be the refrain of every visitor and the person must tire of giving the same response. I would rather greet the person and try to vary what I say. It takes time and creativity to try something different each time I visit the same person. All too often I end up saying hardly anything beyond a "hello" or "good morning".
Difficult as it may be sometimes, my presence may be the best attention I can offer someone in hospital.
Learn appropriate responses
To help me provide beneficial attention to the dying person, I decided that I should learn to respond to them. This means expanding my repertoire of responses and enlarging my vocabulary a little bit. I try to think of what to say, rehearse them and store them in my mind to be retrieved when the need arises.
For example, I have learnt not to tell a dying person "don't worry, everything will be okay". I would prefer to use silence as a response. If I want to say something, I may consider this---"I suppose what you are going through must be worrying to you." And if I wish to continue, "It is difficult for me to understand how you feel and what you are experiencing. Maybe you can help me appreciate your situation by telling me about it."
If I want to be reassuring, I may try something like, "I guess you must be worried about what's happening to you. But I want to let you know that I am trying to appreciate your situation and that I am concerned."
Being appropriate means knowing when to say what we want to say. Timing is important as we can be too quick with our words. Sometimes I find myself eager to lift the mood of the person and end up talking too much. I realise I need to be sensitive to the person and wait for openings or change of mood. Sometimes it means being responsive to the mood. If Betty seemed depressed, I would not ask her how she was feeling or ask what was on her mind.
Instead, I tried to be scarce with words, talking about what I was doing and little things about myself or others that I thought would be of some interest to her. Then when I sensed she was a little more with me, I would comment that she seemed moody and wondered if she was feeling uncomfortable. That was an opening for her to tell me what was on her mind. Usually I tried not to be too direct.
I am also reminded that I need to be appropriate in my behaviour when visiting someone in hospital. I try to behave as normally as possible. It may not help to pretend or be unduly sober as if I were attending the person's funeral in hospital. I talk about daily things, discuss events and keep the person informed of whatever may be of interest to him. I try not to treat the person as an abnormal being even though he needs special care and attention.
Of course that does not mean being frivolous or careless in my behaviour. I try not to engage in undue frivolity and refrain from humour or laughter that may be inappropriate. I also avoid too much attention to anything that may be of no interest to the person. But I will not restrain from any humour or be lighthearted if it helps to relieve the tension of the situation.
There are no mechanical steps for responding to dying persons. Caring is not a technical procedure which we can master or programme into our minds to be applied at will. But learning some responses can be useful so that we will not be tongue-tied or paralysed when the occasion calls for some responses.
Struggle with the person
The word we use in counselling is empathy. It bears the idea of feeling with the person and entering into the experiential world of the other. If the person is feeling pain, we try to feel the pain. If he is cheerful, we share the happiness. We try to feel as if we were the person, without losing the "as if'. When we try to be empathetic, we are in a way participating in the struggles of the person, his dilemmas, questions and the need to come to terms with what is happening to him. Again, this comes with listening and communicating that we are appreciative of what is happening. In such an instance, the golden rule for me is to eliminate the following phrase from my range of verbal responses---"I understand how you feel".
The reason is simple. I do not and cannot really understand how a dying person feels. I can try, but at best I can only try to appreciate and imagine how he feels. Understanding is too deep and making such a statement makes it sound so hollow and trite.
I have learnt to be unafraid to tell the person that I do not understand what he is experiencing. I will say that it is difficult for me to understand but I do want to know what is going on. Perhaps I can be more understanding in the process of knowing.
Then I try to listen to his questions and dilemmas. Dying people need to question everything. And I want to assure them that I am prepared to hear whatever they say without any censorship. I have learnt to be unshockable in the process. Instead, I find it helpful just to absorb and identify with the dilemmas, and the struggles.
I have often been asked questions. A common one is "Why do you think this is happening to me?"
Obviously it is difficult for me to know and I may not even have the answer. That is why I try to be as honest as I possibly can. My response would probably be, "I don't know." If the person pursues further, I would say, "I guess it is difficult for us to know why. Sometimes there are no answers to such questions in life. But we can try to figure this out together."
By doing this, I am not only admitting my own inadequacy but my willingness to struggle with the person in making sense of what is happening. Even if I may not have answers, I want to offer myself. I try not to leave the person to struggle alone as far as possible.
This means being prepared to maintain regular follow-up and contact with the person. It can be exhausting and time-consuming, but is always a fulfilling experience for me as well as the dying person.
Talk about death
This is perhaps the toughest part. How can anyone talk about death? Where do we begin?
I have heard that this is a frightening experience and something that is daunting and haunting for many people. We do not normally talk about death, least of all with someone who is actually dying. Not only is this a frightening subject, some believe that talking about death with a dying person could mean one of two things. One is he is definitely going to die and we will dash his hopes of recovery. He will lose heart and give up on life altogether. For those who are superstitious, talking about death may bring bad luck as well.
The other constraint in talking about it is our fear of what it will do to us. We seem to get the idea that talking about death will mean hastening our own death.
I would recommend that we begin with ourselves before talking with a dying person about death. This requires that we meet with people who dare to deal with this issue. One helpful way is to read about the subject, then get together with like-minded people to discuss what we read. The discussion should gradually shift to ourselves, what we think about our own mortality, our views of death and how we want to have our funerals.
If this is disturbing for us, it may be wise to have a trained mental health professional to facilitate the discussion. If possible, we may need some therapy sessions to help us deal with it.
There are more programmes being offered for those who wish to care for the terminally ill. These sessions are useful in helping us face this issue from different angles, including some self-reflection.
This is important as we can do more harm than good if we try to talk about death with a dying person when we are fearful of it or have all kinds of inhibitions or hang-ups about it. We should avoid transferring our emotional difficulties with death to the dying person.
Therefore, if we are at all uncomfortable or unprepared, we should let someone else do it.
For those who wish to talk about it, it is helpful to bear in mind that we must be sensitive to the person's readiness for it. It helps little to try and impose our need to raise the subject when the person is either not ready or not willing. Sometimes we are too hasty, being influenced by popular opinion from books or mental health professionals that dying people need to talk about death and be prepared for it. No matter how therapeutic we may think it is, we must still be appropriate. Otherwise we will meet with resistance, making the person withdraw from us, or distressing the person altogether.
If the person is open to it, we may wish to begin by asking questions like, "I wonder what you think about your condition?"
Begin in a general manner. Be gentle and ease your way through.
This may offer the person an opening to talk about his illness, his treatment and hopes for recovery.
Then we can proceed further to talk a little more specifically about what he thinks of the prognosis. This will inevitably focus on the terminal nature of the illness. I may also ask, "I wonder how you felt when you knew that you had only six more months to live?" or "I suppose it must have been difficult for you to know about the state of your illness. I am wondering how it affected you when you knew about it."
I tend to prefer a tentative approach when talking with a dying person. So, I would use phrases like "I suppose", "I wonder", "I guess". This is influenced by my belief that I do not know enough and therefore need to know from the person. Even if I am very knowledgeable, I still must acknowledge that I do not know the person enough and should try to let this attitude influence the way I speak.
In talking about death, I make personal references a lot. With Betty I began by telling her how I felt about death and what I did with my will. I told her that I had thought about the possibility of my demise when my children were younger and figured that it was my responsibility to provide for them then. I told her that I do think about this because I also travel a fair bit and my wife and I decided we would leave the children with adequate arrangements should we meet with untimely deaths.
I also talked about my thinking about my own funeral. This helped open the way for Betty to talk about it, with the focus on mine, not hers. Gradually, the focus shifted to hers, which was my goal. But I would try to begin with myself.
There is value in talking about ourselves as we can model for the dying person a way of talking about this matter. If we are comfortable, he can be influenced to be likewise. We must realise that the dying person may end up being more concerned about our feelings if we are not comfortable. It is important to bear in mind that we are there to care for the dying, not for the dying to care for us.
This is where we must be ever-prepared to listen. Encourage the person to talk. Let him say what he thinks and draw him out as much as possible.
In the process, he may be very upset. Tears may predominate and depression may ensue. Our own comfort with people crying is crucial. This was the way Betty reacted. She cried. And, for some time, I did not say anything but waited for her. Somehow tears have a way of relieving a person, especially for someone like Betty who had been used to withholding feelings. It turned out to be therapeutic for her.
Sometimes we can be affected by the conversation and the sadness it evokes in the person and us. We do not need to adopt a detached posture when this prevails. If we are affected and feel like crying, we can allow ourselves to cry along. It is a healing experience for us to participate in the grief reaction of the dying person as he mourns his own death.
I find talking about death an emotionally draining experience. It never fails to stir up melancholic feelings even when I try to be detached and speak about it professionally. I do not think it is possible for me to deal with this matter in a technical fashion. At least this is not a good idea when talking with a dying person who is struggling with life and death, very often for the first time in his life.
But what do we do with the person who is not ready or willing to talk about it? We should wait. Perhaps we can talk about our own thoughts and feelings about death. Or, we can talk about death in general and other people who have terminal illness. This indirect approach may be a means for the person to confront the issue without having to be too personal or direct about it.
This approach may be taken with someone who has not been informed about his death. This is a slightly more difficult situation as we may not want to take the responsibility for disclosing his prognosis if family members have maintained secrecy about it. But we may wish to raise the prospect of death, not by talking about death, but by talking about the treatment. I may say, "I wonder what you know about your condition and the kind of treatment you are having?" This can be followed up with, "What if the condition gets worse? How do you feel about it?" or, "How will you react if the condition gets worse?"
Whatever we try to do in talking about death, we need to remind ourselves that it is not our death we are talking about. That should help us to be sensitive and careful in the way we talk with the person.
Provide material and physical support
Our care for the dying person includes providing whatever practical help he needs. This may range from making the person physically comfortable to running errands as the need arises. It may involve some nursing care as nurses can only do so much due to other demands.
I am always reminded of Betty's sisters who took turns to be by her bedside, on call almost. They were on hand to attend to her physical needs and give a helping hand with movements of the body position or keeping her body clean. My wife used to give her a hair wash and help freshen her up from time to time.
Sometimes the person would appreciate being read to. There are people who can spend their days in hospital reading. However it can be difficult concentrating, especially if there is physical discomfort and pain to cope with. That was what Betty had, people who read to her from time to time. This reading relieves the sense of loneliness as well as provides company for the person.
The other possible assistance has to do with making the hospital room or bed area look nice and cheerful. Betty had a four-bedded room for most her time in hospital. Her space was the most decorated, with frequent changes of flowers, cards strung over the bed and even balloons decking the head of the bed. We tried to make her space as homely as possible since, in a way, it was "home" for her.
It is one thing to help a dying person face death, it is another to help him prepare for the final stage of life. This is saying goodbye; something that mental health professionals refer to as "goodbye work".
When we help someone do this sort of "goodbye work", we are engaging in the process of letting go. This is a process that we are all familiar with in life. It is integral to human existence, to let go in order that we may proceed to the next stage in life. So, we have to let go of the womb in order to gain entry into this world. We let go of childhood for adolescence, adolescence for adulthood, middle age for old age until we reach the final stage. Unfortunately, some of us arrive at this final stage sooner than expected.
We are also familiar with other goodbyes in life. Like having to part from a friend who is moving on to another place, leaving a place of residence that we have grown familiar with or moving on to another station in life after finishing our studies or training. These are experiences of letting go, detaching and embarking for the next experience, the next station.
For the dying person, letting go also means saying goodbye to different aspects of life, to relationships, to self and personal dreams. It is a very painful experience, an experience we all prefer to avoid.
One way to do this is to talk to the dying person about settling personal matters. I did this with Betty by talking about her will. For her it represented something very final, whereas others may not feel the same way. If it is not the will, it could be some financial matters. I once worked with a man dying of lung cancer by getting him to sort out his bank account. He started to withdraw money to be distributed to his nieces and nephews as he had no children of his own. The rest of the money he gave to his wife and closed his bank account.
The other thing we can do is to talk about things that can be given away or kept for posterity's sake. Another man I knew decided to take leave from hospital one day to look through his things, some of which he disposed of, some of which he gave away. He decided that he would ask his wife to donate some to charity and even went so far as to suggest she put his favourite clothes in the coffin.
Apart from saying goodbye to material things, a dying person could be helped to say goodbye to people. This is usually the most painful and difficult part. Be prepared for more tears and struggles. It can be done by thinking about significant people in his life and getting him to tell you how he would say goodbye to them and what he might say if he were to say anything.
One positive way of doing this is to make up with people. Perhaps he could be helped to make reconciliation with those who mean something to him. If there are broken relationships that could be healed, strained relationships that could be eased, that would be helpful. At least he would be better prepared to go, knowing that he can go with a greater sense of peace.
Then there is a goodbye to dreams or anything dear to him. One man told me this was the hardest part for him as it meant saying goodbye to his life altogether, something he was not prepared to do at that time. I left this matter alone and did not raise it until two weeks before his death. He told me he had a premonition he was dying shortly and that he needed to come to terms with his life. Two weeks later, he died.
This exercise must be done carefully and at the pace of the dying person. It is a way of letting go of life so that he can leave it with a greater sense of internal harmony. Although it is deemed to be beneficial, not all dying persons are prepared to go through it.
Caring for family members
We are family-oriented people. This should be our perspective in caring for the dying. The person is not an isolated person while suffering terminal illness. His family network is involved and is very much affected. The family members are likely to be very concerned with participating in the care-giving. In fact, they would be the primary care-givers as outside care-givers cannot easily replace the family.
I am always impressed by the way family members organise themselves to care for their loved one who is dying. This was the experience with Betty's family. It was also my experience when my cousin was dying from cancer. She died two months before Betty. When she was hospitalised, all her siblings got together, taking turns to look after her, sleep with her and attend to her.
This can be very exhausting for the family. In addition, it can drain them of much physical and emotional energies. They may also suffer from lack of attention as well. I was made more aware of this during the time of Betty's illness. It occurred to me that every time anyone visited Betty, the focus of attention was on her. Fortunately, many of those who visited also paid attention to Susie and the other sisters. Soon a bond was also formed with family members.
Family members also need emotional support and care. I was impressed with the way Betty's friends were able to talk to her siblings. Her friends demonstrated their concern in many ways and even spared the time to listen to her siblings' worries as well. At times, they would talk to them about saying goodbye to Betty. In this way, Betty's friends were able to help her siblings with the grieving process as they prepared to let Betty go.
There is also the need to relieve the family of their care-giving duties from time to time. This is even more urgent for smaller families. Betty was fortunate in having a bigger family. However, families these days are much smaller and cannot be relied upon to provide constant care for the dying. This is where friends can help. In fact, one church got together to organise members who volunteered their time to relieve the family in caring for a dying member. It was a family of three siblings and they had few relatives. A roster was worked out to ensure that there was always someone present with the dying person. And that someone was not necessarily a member of the family.
In whatever we do with the family, we must remember that the other members are in need of care as well. Though we may try to assist with the care of the dying person, what may be most beneficial is to realise that family members do go through an almost similar process of dying as the member who is terminally ill. They have almost similar needs too. And they have to deal with their grief and bereavement as they are losing a valued member of the family. It is like a part of them being severed off.
Helping the family deal with grief
Thus far, the focus has been on ways of caring for the dying and how we can attend to the family. In caring for the family, there is one aspect that demands our attention during the illness and after the loved one is gone. It involves attending to grief and bereavement. This is a major portion of the totality of the experience of losing someone dear to us.
Loss brings with it a deep sense of bereavement. It can be a loss of any kind. Most of all, it is loss of life that threatens the internal equilibrium and harmony of people the most. There is an inexplicable disturbance that triggers off the process of mourning which any grieving person must experience.
A death in the family brings about the most intense of loss experiences because it is so final. It is highly unlikely that anyone can bring the person back to life, even though we may have heard of occasional experiences of some who did. Ultimately, however, even those who have been brought back to life must die.
Furthermore, we may prepare the dying person for death and the family could be led to the point of acceptance, if they ever get there. Yet death remains something that we resolve in our minds. It is something different when we get to our hearts. We will still try to deny and avoid it.
It is with this in mind that we must appreciate the grief that the family is going through. If we want to be helpful, we cannot be careless about the way we respond to them. We must respond with sensitivity, understanding and premeditated behaviour.
Permission to grieve
This sounds strange, but we sometimes do not allow people to grieve. We would rather that they cheer up and we expend our energies trying to cheer and reassure the dying and the family.
When we do that, we may be pushing the family to suppress their emotions, deny this part of their reality and ignore the fact that grief is a fact of life that accompanies every loss. Sometimes, we do not give permission for people to grieve because we are afraid of the mourning process. It disturbs and reminds us of unresolved grief in our lives and may even confront us with our mortality.
Therefore, giving permission to grieve means acknowledging that people are bound to be stricken with grief and there must be some form of release for this grief. It does not matter how this release comes about, as family members have their own way of expressing how they feel deep inside.
I am careful in my dealings with family members to avoid trying to cheer them up in moments of loss. Telling them it is not so bad, or everything will be okay, or that the departed loved one is in the hands of God in a far better place, do not come easy with me. I try to banish them from my range of responses. Instead, I try to be silent, focus on how family members are feeling, talk about whatever preoccupies their minds and pay attention when they express their grief.
I withhold myself from restraining them. It is their grief. They must find expression for it in their own way, even if it is silent grief. It is their right and their need. I must not block or hinder. I want to be facilitative in whatever way I know how, so that they can mourn and restore their internal balance.
I am also aware that some people are denied this needed expression of grief by various factors. They are not permitted to grieve because they have to be strong, to hold everybody together or to attend to their needs at the moment of loss. This is such a burden for family members, especially the one who has the most responsibility or thinks he has the major responsibility for other family members.
Grieving is also disallowed because the occasion demands that things be done, the dying member be cared for or arrangements be made for the funeral when he dies. Activities tend to divert our attention from our inner feelings. There is hardly time to reflect. And we sometimes escape into activities because we do not allow ourselves to grieve. We feel safer.
Sometimes it is difficult for men to express their bereavement. In a society where men must be macho and unfeeling, a tower of strength for others, permission is not given to grieve. They have to face loss with stoic composure.
Permission can be given through the way we respond to their feelings.
I remember a pastor who told me of his visit to a bereaved father who had lost his baby in an accident. During the funeral wake, he managed to spend a few minutes with this father alone. After hearing about the account of the accident and how the baby was killed, the pastor put his hand on the father's shoulder and said softly, "It must be a very difficult experience for you."
At that moment, without any inhibition whatsoever, the father leaned forward, covered his face in his hands and wept. In between sobs, he said, "You are right. It has been very, very difficult for me. I felt I needed to be strong for everyone and get things organised. But deep inside, it hurts a lot."
The empathic response from the pastor gave the father permission to express his grief. He was able to mourn freely because he must have felt some understanding coming from the pastor in the way he was spoken to.
Men like this father need some indication that it is okay to grieve. In fact, women need it too, even though it is more acceptable for them to be freer than men in moments like these.
Being appreciative of these dilemmas make me more conscious of the need to be as permissive as I possibly can in times of bereavement. Mourning is so much a part of loss that I want only to be as facilitative as I can in contributing to its fullest expression and resolution.
Permission not to grieve
While I may advocate expression of grief, there are those who have difficulty coming to terms with loss, let alone expressing how they feel. This should alert us to those who have difficulty or are unwilling to get in touch with their grief.
When we encounter such family members, it is wise to recognise that they should not be pushed into confronting their grief too prematurely. One way to let them know it is okay not to grieve is to let them deal with whatever they want. If they are not talking about their loss or making any reference to their feelings, we should simply accept what they offer.
Sometimes there may be avoidance of feelings, expression of regret or sadness over the loss of the loved one. To be helpful, we should learn to listen with understanding. We should talk about anything the family is interested in rather than imposing our own agenda. At no time should we hint that they are in the stage of denial or are defensive just because they would prefer not to deal with their loss.
Sometimes it may be necessary to tell them very directly that it is okay if they prefer not to talk about their feelings. I remember saying this to some people when I sensed that they were not responsive to talk, "Well, I suppose it is natural for you to leave this matter alone. Sometimes it is difficult to talk about our feelings and deal with grief. It would be wise for you to keep your feelings to yourself and talk about them only when you think you are ready."
Understand the significance of grief and mourning
It may become easier for us to appreciate a person's need to grieve if we try to understand what it means and the part it plays in human existence. From my observations, I have been impressed by the way grieving and mourning are intertwined with human experiences.
When we grieve, we are engaging in the process of letting go. This is our natural response to loss and it is our way of adapting to it, indeed to any losses of life. In grief we say goodbye, we try to leave behind what we cherish, what has become so much a part of us. It helps us move on.
It is our way of coming to terms with loss. For there will be an end to mourning. We do not usually grieve endlessly. Apparently, those who do are probably those who have been denied this process.
Ever so often I have been told that a good cry has been therapeutic. No matter how long or how intense the crying may be, it is our way, a God-given way, of releasing pent-up emotions. It is our very own resource for relief from the pain of loss.
If we truly wish to be helpful in any way, respect the family's need for expression of grief.
Be patient and appropriate
The professional literature on grief and mourning usually identifies stages of the grieving process. Kubler-Ross' stages have been the most influential thus far, though there are those who disagree with her schema. People are dynamic creatures with their own way of responding to loss and do not necessarily fit into any particular frame. That means they may not proceed in the stages of bereavement that we observe in others.
This is important to bear in mind. Though Kubler-Ross and many like her may identify stages, we should take that as mere observations and impressions. These are not prescribed stages that people must or will go through in responding to loss.
The professional literature also differentiates between normal and pathological grief. For example, there is one view which suggests that normal grief lasts for six months. After that, it becomes pathological and therapy is indicated. The person or family must receive help to resolve their grief, otherwise they will suffer psychological and physical symptoms.
This view of grief deserves some consideration. There are those who become stuck at some points in their lives or are affected in their relationships partly because they have not resolved losses encountered in life. I have met people who are afraid of death or fear to enter into any intimate relationship because they have been emotionally handicapped by grief that persisted from the past. The process of therapy often helped them to deal with past bereavement and find healing for their inner being. They can then feel more at ease with themselves and others.
However, we should not apply all these observations and opinions rigidly and label behaviour as pathological indiscriminately either. I would prefer to avoid any labelling or diagnosis. I would rather let people respond in the way they know how, in their own time, at their own pace, as long as they do not engage in any destructive actions to self or others.
This is what I mean by being patient and appropriate.
We must let the family be. Though we may have some ideas to facilitate the process, we should always be relevant and appropriate. Once again, sensitivity is the key. It is our guiding principle at all times.
In November of 1992, Singaporeans read about a very tragic and traumatic death of a young boy of five who was thrown off the window of a high-rise apartment building in Singapore. He was flung off the window by the maid who was employed by the family. The older ten-year-old brother put up a fight with the maid but was overwhelmed by her. He managed to escape in spite of injuries to himself, while the maid killed herself by jumping off the ledge.
All this happened when the parents were away at work.
This very tragic experience was brought to my attention when the family was referred for therapy. They were open to seeking help to tide them through the trauma and loss. At the time of therapy they were primarily concerned about their surviving son who went through the harrowing experience with the maid and brother.
Throughout the months of therapy with the family, I learnt once again that family members need time to deal with their loss. Each member has his or her own timing, own way of expressing grief. And what was significant was the way they tried to adjust to life after the loss. The surviving brother became highly sensitised to strangers, fearful of being alone and was suspicious of any action which seemed threatening in any way.
The family on their part decided that the deceased son's room should not be disturbed. His bed was arranged as it was when he was alive, his toys in their usual places. The only change took place in the maid's room. It was carefully refurnished and redecorated to get rid of any memory of her.
But the boy was kept alive. Alive in their memories and in the home. His place in the back-seat of the car was always kept vacant when the family travelled in it, providing them with the reassuring presence of the boy. At home he was included in conversations, with frequent references to how he would respond and behave in certain situations. Up to the time of writing, this little boy was still very much a part of the family's routine.
No one was prepared to say a final goodbye yet. Perhaps in due time someone or all of them would. What they need is time.
This experience with the family reinforced my thinking that I must be patient with bereaved families. If they are not ready, I will not insist that they bid their deceased goodbye. I will journey with them as they negotiate the stages of grief, in whatever way I know how. I will refrain from imposing what I think is normal and acceptable.
Dealing with Feelings
Part of the grief process is the expression of feelings. This is similar to the need of the dying person to express emotions. I am referring to any kind of feeling the family is experiencing. Our role is to be a good listener and facilitate expression of these feelings. We may not agree with the feelings and may feel uncomfortable, yet we cannot dismiss them.
Grief is such a painful disturbance that all kinds of feelings can be experienced at any time by the family. It may swing from anger to depression, to guilt, anxiety and sadness. They can all be mixed together or come at separate times.
Anger may be directed at doctors, God, the dying member of the family or themselves. The family can be angry with the doctor for not doing a thorough job of detecting signs of the illness before it became malignant. They may also be angry that the doctor seems incapable of providing a cure and think he is incompetent. This anger may be strong if the family finds no improvement in the condition of the dying member.
Though the anger did not come directly from Betty's family, some close friends of hers were so angry with the doctor that they even suggested talking to him for not helping Betty the way they thought he should have. However, after expressing their anger and talking about it with each other, it subsided.
Family members can also be angry with God, even if they do not believe there is one. Somehow they believe that some divine being should intervene supernaturally to relieve and cure illnesses, especially if that is incurable by human standards. Or, they are angry because they think God should have prevented the illness. This anger becomes stronger for those who believe their devotion to their faith should be blessed with special favours from God. He should protect them from terminal illness or suffering. Obviously God should not have allowed the loved one to die.
The family may also be angry with themselves for not taking care of the loved one. They may blame themselves for not being sensitive to the ailment and not offering enough help to ensure that it did not occur at all. Sometimes the anger with themselves may be related to the way they treated the deceased. They may be angry that they did not treat the deceased member better. This is usually linked with guilt and regret over what they did and what could have been done.
Some of these feelings may be considered irrational by us, but they are real to the family. We are not there to assess feelings but to listen to them. Trying to restrain their expression may not be very wise. Learning to listen and empathise is much wiser.
Helping with the funeral and after
If we happen to be close to the family, we will have an opportunity to become involved with funeral arrangements. This is a particularly busy time for everyone as there are funeral rites to attend to and visitors to receive. Most ethnic groups have their own rituals, ceremonies and requirements, religious or otherwise, for funerals. In spite of modernisation, these are still being observed, sometimes to its finest details.
I am aware of the strain and stress on Chinese families who not only have to cope with the loss of a loved one but the demands of funeral rites. This tension is aggravated by the transition from the traditional to the modern in mourning the dead. The older generation may prefer traditional forms of mourning which may conflict with the younger generation.
There is little that non-family members can do in influencing the form funerals should take unless there is a special relationship with the family. What we can do is to be supportive and available to help in whatever way possible. If there is any way to help simplify matters, it will also be helpful.
Following the funeral, the family usually experiences a sort of anti-climax and emotional and physical down-turn. The days following the death and during the funeral will demand a lot of energy from family members. The funeral wake, activities and grief will consume most of their attention and energy. There is a tendency to sleep less, with a possible loss of appetite. These will definitely take its toll by the time the funeral is over.
This is the time for us to be with the family. However, care must be exercised as we do not want to overwhelm them with our presence. They also need time to be by themselves, to recollect the experience and reunite as a family without the deceased. But they may need company from time to time, so that they do not feel an abrupt sense of having been abandoned. Families have sometimes told me that they felt very encouraged by the presence of people and friends during the time of the bereavement. Then they experienced a sudden emptiness after the funeral when no one contacted them.
The period following the funeral brings with it another sense of loss. Not only is the family experiencing loss of the loved one, they now go through the loss of the presence and support of people around. It is useful to bear in mind the need to help reduce this sense of loss by making contact with the family. This is also a time to listen to the family as they talk about their time of mourning and how they are adjusting to life with one less member.
We must also be prepared to maintain contact if the family needs continuing support. They may still need a listening ear, concerned presence from us and assistance in their adjustments.
Some other reflections
There is no easy cook-book approach to caring for dying persons and their families. We may wish for some nice recipe to follow so that we will do all the right things. Unfortunately, there is no such recipe book. Caring for people is not a mechanical procedure. It includes acquiring some knowledge and learning some skills. But it is more than that.
This is the reason for sharing experiences from my own work with dying persons and their families. I have provided some tips and offered suggestions on how to be a little more helpful in extending our care. Hopefully, these will prove useful in appreciating the situation, needs and dilemmas of dying persons and their families. In any case, it is not what we do that is important. It is what we are and how we present ourselves that will make the difference between being helpful or unhelpful to those in grief.[47-83]
Link back to index.html