Helping him and his parents to cope in the terminal phase

This article is designed to help you and your family at this difficult time and is arranged under the headings:

• Anticipatory Grief
• What to say to Someone facing Death
• Loneliness
• How to deal with your Grief

I believe it is important for parents to realise that being gay is part of one's total personality – like being athletic, artistic or left-handed. A personality moulded since conception by genetic, prenatal, psychological and cultural factors, gay men, through their unique characteristics add a special diversity to the rich fabric of human life, as in the words of Dr. John Money, "Did Michelangelo, Leonardo da Vinci, Tchaikovsky, Oscar Wilde and thousands of other artists, scientists, politicians, lawyers, physicians, clergymen, and others whose being gay was inherent to their achievements?" (extract from Why is my Child Gay).

It is not possible in this article to discuss all the reactions we feel when our children 'come out' and declare their homosexuality. Many families take the news as a loss – almost as a death and just as in grief, we tend to progress from shock, numbness, denial, anger, sadness, guilt and depression, we will often see these same reactions in patients when their child finally says, "I'm gay". Parents will react in their own unique ways and it needs patience and care all round if the family relationship is to be maintained in love and understanding.

Sometimes parents will have suspected or known all along and respond without shock or anger and will be pleased that everything is out in the open and they can learn to understand what being gay is all about and so be better able to accept the reality.

So What is Homosexuality

Being gay or lesbian means that one falls in love with someone of the same gender. For homosexuals feeling attracted to a person of the same gender is as natural as it is for heterosexuals to fall in love with someone of the opposite gender. Bisexuals feel attracted to both men and women although not necessarily at the same time. The feelings are affectional as well as sexual.

It is believed about one in ten men are gay. For women the ratio is somewhat lower but no hard statistics are available. Researchers found that there are fewer exclusive homosexuals among women than among men and it appears women are more flexible in their orientation than men. One in every four families has a gay member.

Homosexuality is not an illness or abnormality. It is about as common as left-handedness and homosexuality deserves to be regarded just as natural and unthreatening as left-handedness is today. (Remember there was a time when left-handed students were punished.)

The origins of homosexuality and heterosexuality are as yet unknown, but most scientists believe that it is the result of a combination of factors including the biological predisposition to homosexuality which is present at birth. Parents have no control over their child's sexual orientation; neither have the children themselves. (Awareness of being different may start as early as the age of 5 or 6.)

Most experts believe that homosexuality cannot permanently be changed through therapy or other means. Although bisexuals have some degree of choice, their outward behaviour may be motivated more by a desire to please family and friends and conform to cultural norms than by their true sexual orientation as expressed in their dreams and fantasies.

In recent years AIDS has cast a deadly shadow over any members of the gay community and if you are a parent, sibling, or close friend of a person with AIDS, you will find that your life suddenly resembles a roller coaster ride.

All the family's dilemmas and conflicts will complicate the situation as everyone comes to terms with the patient's lifestyle (whether approved of or not) and having to face the probability of a death in the family.

Many parents learn of their son's homosexuality at the same time they learn he has AIDS. They then find themselves dealing with two overwhelming problems at once – trying to come to terms with their son's life-style which they may disapprove of, and simultaneously facing the probability of their son's premature death. Even as they're adjusting on both scores, parents must make major decisions. How will they respond to their son's needs? If they want to help, how can they?

The parents must also, if they're honest with themselves, face the disruption of their own lives. When the mother and father differ in their willingness to cope with their son's friends and lifestyle, this can complicate things and cause further friction.

Many fathers are overwhelmed by the knowledge of their son's homosexuality. They will have to deal with these feelings first and then face their son's impending death. Mothers on the other hand tend to react to the tragedy of the illness and are in a state of anticipatory grief for their child. Over all, parents and siblings will be confused, hurting and frightened.

A common family preoccupation is what to tell relatives and friends. They'll ask, "Do we say that our son has cancer or do we dare tell the truth." Permission to say 'anything' of course, should come from the son so it is important that the AIDS patient and his family weigh the outcome of this choice. Some families will consider themselves burdened enough without risking their relatives and friends disapproval or rejection. The patient and the family may decide to hide the truth and to refer to the illness as cancer, lymphoma or a brain tumour.

Other families may prefer to share the facts from the start rather than risk hurting other relatives and friends by not telling them but having them surmising facts for themselves. Also parents may worry about the strain of carrying on a deception and feel they need the support of other relatives and friends. Whatever decision is made it can only be reached after full family discussion with the patient.

Another difficult question for parents is how to treat the son's lover and friends, particularly if they wish to take care of the patient. Here both parties can only come together with an open, non-judgmental, unconditionally loving heart. Parents need to realise that lovers and friends are family and truly love their son. They, along with the patient, will teach us about courage, about tears and about laughter. What is most important at this time is the love everyone has for the patient. If all involved give the gift of unconditional love to each other, there will be no unfinished business and all concerned will grow in wisdom and the patient can die in peace.

Another question that all parents will ask – Could they contract AIDS from caring for or being in close relationship with their son. There have been no reported cases of AIDS contracted by merely living in the same household. The recommended precautions which include avoiding exposure to blood and bodily fluids are generally believed to be sufficient to prevent infection. Nevertheless some sensible precautions need to be taken when nursing someone with AIDS – Wearing gloves while carefully disposing of body fluids – Wearing gloves while assisting with bathing if either parent or caregiver has any bleeding or open lesions – Wearing gloves to handle soiled clothing or bedding – Using 10% chlorine bleach to disinfect any article soiled with the patients body fluids – Washing blood soaked clothing or bedding in cold water to prevent staining: then washing in hot soapy water. Parents should encourage their son to hold onto his sense of independence as long as he can. If parents unwittingly become overprotective their son will feel smothered. Parents need to care without making their son either overly dependent or resentful. He may be your child but he isn't a child.

As stated previously, don't try to isolate your son from his friends. He should not be separated from the people he needs most.

Once parents understand they need to safeguard their son's dignity, as well as the quality of his remaining life they will allow him to make as many decisions as possible for himself.

The death of a child at any time upsets the sense of the natural order of life and parents will feel guilt, anger, frustration and devastation.

Anticipatory Grief

The family of the person facing death may go through the mourning cycle prematurely and write the dying person off before they are dead. Thereafter, they react in a cold and distant fashion because they do not want to reopen a painful chapter that in their minds has been closed. If you see this development, you should caution relatives against burying the patient while he is still alive because this person needs their emotional support to the end.

Often relatives when faced with the impending death of a loved one will pretend it is not happening. This denial that a loved one is dying is hard to deal with, but it is important to try because of the immense burden of guilt the survivor will feel later. Friends react in the same way. Rather than risking saying the wrong thing, many friends fail to visit and when they do, can say little or nothing. There are then long silences between old friends and loved ones punctuated by nervous banalities. None of us has been taught what to say to a dying person or how to confront death. Talking about the weather, the football and the TV programs is easier, but we must ask ourselves are we truly meeting the dying person's needs? Are we trying to control the atmosphere with ordinary conversation about a world the dying person feels less and less a part of? By just 'being there', listening to what a dying person is saying we learn much about death and dying. We learn that each person and each death is unique.

What to say to Someone facing Death

Talk to the dying person as you would a friend. Relate person to person. Don't be afraid to show your humorous as well as your serious side.

Hear what the dying person is saying but also what he is not saying. Use your mind, heart, eyes and ears to listen. Recognise that people and families have long standing patterns of communication and means of coping with stress. Attempting to interrupt or change their usual patterns will just increase the stress.

Respond to concerns with compassionate honesty. If you don't know the answer, just say so. Often people are interested in what you think or feel about a situation.

Appreciate the dying person's need for privacy. Never force communication. You must develop the ability and sensitivity to know when a silent and non-communicative person is ready to talk.

Talk about the 'here and now' at first. Let the dying person bring up the subject of his dying, the future, or his personal life. They will do this with such statements: "Why won't my family talk about my dying?" "I'm afraid of the unknown – what does happen after death?" "I'm so tired, I don't want to live like this." "I don't want to upset my family, but I think my death will be a relief."

Don't share your personal problems spontaneously. Be willing to expose some of your uncertainties, fears and vulnerabilities. You will gain insight into your own feelings; in sharing your humanness with a dying person you might better understand what it is like to be dying.

When working with families I advise them to treat the dying person not very much differently than they did before the illness. I advise them to tell them if they make unreasonable demands and even to argue with them. It is even OK to get mad and lose your temper. I tell people to do all the things as far as possible, that they did before the person was terminally ill. Dying is painful enough without the patient being handled as though they were already dead.

Loneliness

There is nothing better for a dying person or his family than involving him in his care. One of the things a patient suffers from most is loneliness and these feelings of isolation along with the symptoms of insomnia, weakness, agitation and depression that accompany the process of dying, are frequently relieved when a close relative or friend is in close communication. The family needs to be involved in the treatment, physically as well as emotionally. Basic nursing procedures are easily learned and lovingly carried out. Many family members can be taught basic relaxation techniques as well as therapeutic massage and acupressure for the relief of symptoms. This helps with pain and anxiety and is very therapeutic for the relative as well as for the patient.

When our son dies we experience grief. Grief is normal, natural, healing and its prompt expression must not be denied.

Parents do not usually outlive their children, children normally live longer than their parents. For this reason the psychological effects of the death of an adult child are extremely difficult for parents to accept. Grief is often so painful that people will attempt to avoid it at all costs. Whilst avoidance may bring temporary relief, the work of grief is something that cannot be postponed.

You will have a feeling of shock, numbness, a yearning and a protest! You have lost part of yourself.

You will feel disorganised and cry a lot, you are restless and may even feel guilty. You may feel angry at the World. You feel so alone. Loneliness is one of the biggest problems of grief.

The first stage of grief is shock, and this stage helps us cope temporarily. You tend to keep busy and try to think, to believe, that he has not gone.

Then the pangs of grief begin: intense feelings of yearning and pining for the dead person. You become aware that this awful thing has really happened, that the son you loved has died.

This realisation comes in waves of grief and yearning. You will feel vague anxiety, and your body will ache and you will be unable to sleep.

Grief produces immediate and prolonged responses. There is weeping, sleeplessness, depression, inertia, decreased interest in social activity, guilt, anxiety and anger.

At times you may feel panicky, thinking you might be going out of your mind, and you may not be able to function the way you want to.

This is all natural.

Knowing that it is necessary to express your grief in your own way and having some common sense guidelines can be very helpful. It is good to know what pitfalls to avoid and to learn that 'good grief' is not just an expression, it is a necessary crucial part of grief. How you express your grief is up to you.

How to deal with your grief

The checklist below highlights a few important matters to consider during bereavement. Each person is different, so beware of ready-made solutions. The following are suggestions to consider; they may or may not fit your situation.

Psychological

– Everyone needs some help – don't be afraid to accept it.
– While you may feel pressured to put on a brave front it is important to make your needs known by expressing your feelings to those you trust.
– Often numbness sees us through the first few days or weeks. Don't be too surprised if a let-down comes later.
– Many people are more emotionally upset during bereavement than at any other time in their lives and are frightened by this. Be aware that severe upset is not unusual and, if you are alarmed, seek a professional opinion.
– Whether you feel you need to be alone or accompanied – make it known. Needing company is common and does not mean you will always be dependent on it.

There is no set time limit for grieving. The period will vary from person to person.

Physical

– It is easy to neglect yourself because you don't much care at a time of grief.
– You are under great stress and may be more susceptible to disease.
– It is especially important not to neglect your health. Try to eat reasonably even if there is no enjoyment in it.
– Although sleep may be disturbed try to get adequate rest. And please, no grog or sedatives.
– If you have symptoms, get a doctor to check them out - If people urge you to see your doctor do so, even if it doesn't make sense to you at the time.

Social

– Friends and family are often most available early in bereavement and less so later. It is important to be able to reach out to them when you need to. Don't wait for them to guess your needs. They will often guess incorrectly and too late.
– During a period of grief it can be difficult to judge new relationships. Don't be afraid of them, yet it is usually wise not to rush into them. It is hard to see new relationships objectively if you are still actively grieving, and this kind of solution may only lead to other problems.
– No-one will substitute for your loss. Try to enjoy people as they are. Do not avoid social contacts because of the imperfections in those you meet.
– Someone who is not close to you but who is willing to listen may be particularly helpful.

Economic

– Avoid hasty decisions. Try not to make major life decisions within the first year unless absolutely necessary.
– In general, most people find it best to remain settled in familiar surroundings until they can consider their future calmly.
– Don't be afraid to seek good advice. Usually it is wise to get more than one opinion before making decisions.
– Don't make any major financial decisions without talking them over with experts.
– Having a job or doing voluntary work in the community can be helpful when you are ready, but it is important not to over-extend yourself.
– Relationships with family and friends should not be sacrificed in an effort to keep busy.

Spiritual

- Personal faith is frequently a major source of comfort during bereavement.
- For some, however, maintaining faith may be difficult during this period of loss.
- Either reaction may occur and both are consistent with later spiritual growth.