EMOTIONAL AND SPIRITUAL CARE AND COUNSELLING FOR THE PERSON WITH FULL-BLOWN AIDS
Andre de la Porte
Being tested HIV+ can have a mayor impact on someone’s life. Many people are able to continue with a normal life after the diagnoses. They are more aware of their physical and health status and are concerned with minor illnesses and blood test results. With the onset of AIDS symptoms the person enters a whole new phase, both on a physical and an emotional level. Physically the disease progresses in four phases :
- Acute phase or acute seroconversion illness (Glandular fever-like illnesses)
- Asymptomatic carrier stage (The person displays no symptoms)
- Early symptoms of HIV disease (Tiredness, fever, night sweats, diarrhoea, oral thrush, shingles and neurological changes are common symptoms)
- AIDS (Minor symptoms of HIV disease become more serious and persistent. The person is thin and emaciated, exhausted most of the time and suffers persistent opportunistic infections such as Kaposi’s sarcoma, tuberculosis and pneumonia).
There is a parallel emotional progression, which is accompanied by distinctive human needs.
Phases of disease Emotional experience Human need Focus of counselling Spiritual focus
- A-symptomatic Denial, fear, anxiety Security Empathy God’s compassion (Trust)
- Symptomatic phase
(Health impairment, opportunistic infections) Isolation, loneliness, mourning Connection Communication & relationships Belonging to a healing community, acceptance
Guilt (Internal & External) remorse, anger Forgiveness Restitution Reconciliation (with self, others and God)
- Full blown AIDS Self-rejection, depression, hopelessness, worthlessness Dignity Hope and meaning A hopeful and meaningful life
- Terminal phase Wasting away, uncertainty, fear Peace and acceptance Letting go Peace
- Bereavement Sadness and longing, anger, depression Grieving the loss Acceptance of loss, continuing with life Comforting
It is important to note that many of these feelings appear in different stages of the disease. Each of the human needs, therapeutic interventions and spiritual needs can therefore also appear in other phases.
The carer should keep in mind that the person is suffering many losses
- My physical abilities (Strength, energy to go to the toilet, make food, wash);
- My savings (Money);
- My home (House, clothes);
- My job (the work I do);
- My friends (Close relationships);
- My ability to communicate with others and express my feelings and wishes;
- My faith in God (My trust in an all-powerful, personal God who knows me);
- My dreams and hopes for the future.
The person will experience many different emotions:
- I am afraid that my family will find out that I have AIDS (Fear)
- I have lost everything because of this sickness (Loss and grief)
- I am such a bad person, I deserve to have AIDS (self-blame)
- I can continue with my life – God is good (hope )
- I don’t believe I am HIV positive (denial)
- It is so unfair that I cannot live a normal life (Anger)
- It is such a terrible illness. What will happen to me (Fear)
There are four skills in caring for and counselling the person with AIDS:
When dealing with emotions it is important to communicate empathy. This can be defined as looking at the other person’s feelings and situation through their frame of reference (way of seeing life) and communicating this understanding to them”.
2. Problem solving
When someone comes to you with a problem there are usually two needs:
- They do not know what to do, the problem is too complicated for them to solve alone;
- They want to discuss options for handling the problem.
3. You will need to analyse the problem by doing the following:
- Listen: Use mirroring to make sure that you hear what is being said
- Understand: Make sure you understand:
– How the problem is perceived by the person
– Who is involved in the problem
– What the person plan to do
- Identify the areas where the problem lies
4. AIDS touches all the areas of a person’s life. To understand the problem you need to ask:
- What information does the person need to know? (Mental)
- What are the family and community needs? (Social)
- What are the emotions and emotional needs? (Love, anger, denial)
- What choices need to be made? What goals should be set? (Using the will to make decisions?
- What are the physical needs? (Food, medical care, living assistance)
- What are the person’s spiritual needs? (To see a pastor, become a member of a spiritual community?
For each of these aspects there can be:
- Something to do
- Something to learn
- An action related to family or community
- An emotion to be dealt with or changed
- A decision to be made
- A physical step (e.g. making a change to one’s daily schedule)
A practical way of doing this is by drawing up a chart:
My problems What I could do
(My options) When I could do it Who could help me My decision
After making the plan, it is good to ask the person how they feel about it. Are there still any fears?
3. Spiritual Support
The following themes can be introduced to help the person with AIDS to live a full and meaningful life to the end:
3.1 God’s compassion and our security
Sometimes in our circumstances we struggle to experience God’s abiding presence. Remember God is always with us.
• God is with us when we feel trapped and helpless: Psalm 118:5-8; Hebrews 13:5a-6.
• Nothing can separate us from the love of God Romans 8:31-39
• God sees that the vulnerable are cared for: Deuteronomy 10:17-21
• Jesus understands our suffering: Hebrews 4:12-14
• Jesus is the Good Shepherd: John 10
• We are under God’s Protection: Psalm 91
3.2 Experiencing connection and belonging to a healing community
The Bible consistently affirms that God cares for everyone, without regard for physical and spiritual condition, or standing in society. Moreover the Bible reveals the special love and concern God has for those whom society ignores and excludes. Jesus Himself made this evident through what He taught what He did and how He cared.
• We are connected to Jesus and He calls us His friends: John 15:1-17
• In the church as Body of Christ we are connected: 1 Corinthians 12
3.3 Forgiveness and reconciliation
An important area to be resolved for a person to live and die well is the healing and restoration of broken relationships. It has been said: “AIDS is more than an infected body, it usually has to do with infected relationships”. With AIDS there is considerable potential for broken relationships:
• a young person ignoring parental advice and being cut off
• Rejection by the church, community or family of the PWA;
• An unfaithful partner infecting their spouse
The onset of AIDS is an important time to seek resolution of these.
Sometimes the person may feel as if God has turned away from him/her, and no longer cares. But this is far from the truth. God is always eager to offer forgiveness and to accept us in love.
• God is faithful and His love is abundant: Psalm 103 & 130
• Jesus came into the world to be a Saviour, not a judge: John 16:18a; 12:44-50; 1 John 4:9-10
• We have the responsibility to seek forgiveness and restoration: 1 Cor 13
3.4 The dignity of a meaningful and hopeful live
Sometimes it feels as if our lives have no meaning. We feel as if it would be better is we were dead. God knows each one by the name and He has a plan for each one of us. We are special and unique for Him.
• God will never forget us: Isaiah 49:15-16
• What really matters: Philippians 3:8a-11
• You are a new creation: 2 Corinthians 5:17
3.5 Finding peace and acceptance
AIDS makes us sharply aware of our own mortality and ultimate death. But the Scriptures proclaim the even greater reality of life beyond death.
• A tent on earth and a house in heaven: 2 Corinthians 4:16-5:8
• Jesus is the way the truth and the life: John 14:1-14
• God gives peace: Romans 5:1-11
• Our future is assured in Jesus Christ: John 1:11-12; 10:28-29
• What really matters: Philippians 3:8b-11.
4. Positive living with AIDS
This is the slogan of TASO (The AIDS Support Organisation) in Uganda. This include the following:
• Maintain a positive attitude towards yourself and others;
• Do not blame others
• Deal with guilt and shame;
• Follow medical advice;
Seek medical attention quickly when infections such as bronchitis, thrush or skin sores appear. Every time a person with AIDS gets an infection, the body’s resistance to AIDS is further lowered.
Get enough sleep and do not get overtired;
Do not smoke or drink alcohol. This reduces the body’s resistance to disease;
• Take enough non-strenuous exercise to keep you fit;
• Continue to work if possible;
• Occupy yourself with non-stressful activities like crafts;
• Accept and give both physical and emotional affection;
• Socialise with friends and family;
• Seek counselling to maintain a positive attitude and talk about your feelings, whether angry, sad, blaming or hopeful;
• Always use a condom during sex. Even if both partners know that they are HIV+. This prevents pregnancy and catching other sexually transmitted diseases, which would further lower immunity to disease.
Dortzbach, K & Kiiti, N 1996. Helpers in a healing community. Nairobi. MAP International.
Hampton, J1990. Living positively with AIDS. London. ACTIONAID.
Louw, DJ 1994. Illness as crisis and challenge. Pretoria. Orion.
MAP International 1996. Choosing hope. Cirriculum Modules for Theological and Pastoral Training Institutions.
Van Dyk, A 1999. AIDS care and counselling. Cape Town. Maskew Miller Longman.
World Health Organisation 1993. AIDS home care handbook.
André de la Porte
(HospiVision, PO Box 12423, Queenswood, 0121, Tel. 012 329 4420)