SECTION A – CAREGIVING STYLES

1. INTRODUCTION TO CAREGIVING

Caring for someone who is suffering with a long term or life limiting illness is one of the most challenging experiences in life. Sadly most of us are not trained in any way to assist a person in these areas. This however, does not stop most of us from believing that we can single handedly deal with the wide variety of issues that confront the caregiver.

HIV/AIDS infects and affects millions of people. It is a massive pandemic (pandemic = a disease that affects many groups of people, not just a few).  There are few people who give care to people with HIV or AIDS.  We therefore need to ensure that these care-givers are themselves taken care of, which is what this manual is concerned with. We wish to ensure that those who care for others are sufficiently cared for so that they can continue with their valuable work for many years.  This means identifying and remedying ‘caregiver burn-out’ which causes many people to stop helping others because the enormous burden they place upon themselves has become too much.

It is true that nature has provided us with an amazing survival instinct that is triggered when someone we love is in danger. There is a rush of energy and we rise to the occasion, frequently surprising ourselves with our stamina and ability to cope. It appears that we can maintain this energy and effort indefinitely, as we feel responsive and alert even although we lack well needed and deserved rest. Unfortunately, this stamina was not designed to be a coping response for a long period of time. Instead, it was designed to get us quickly through a short-term crisis. Therefore, if we do not learn to adequately care for ourselves, we as care givers reach a point where we burn out.

Due to the nature of AIDS, there is no accurate method to predict how long your role of caregiver will be required. We just don't know how long AIDS will be part of our lives. Regardless as to whether you give care for a few hours a day or for many months or years, this manual is for you. It is about you dealing with your needs. To some this may sound like a selfish idea, but the truth is that until such time as you know how to care for yourself, you cannot possibly be an effective caregiver. Effective caregiving to and for yourself will benefit the person you are caring for. 

2. FUNDAMENTAL CAREGIVER APPROACHES

A.   Co-dependent / CARETAKERS

I need you to approve of me in order for me to feel good. I will feel good only if I can help you. Your approval and gratitude is my reward.

See themselves as a Rescuer (superior).

See other person as a Victim (inferior).

Needs approval.

Thinks she or he has all the answers, or that she or he should have all the answers.

Pretends everything is under control, even when it is not.

Places the needs of another over their own. Sacrifice self for others.

Need to ‘fix’ the situation or person. 

The only time they feel whole is when they are helping out.

Judgmental of people.

Burn out quickly

B.   Interdependent / caregivers

I do not need you to approve of me. However, I want you to participate, as we can achieve more together. I do this because I can – I have care to give.

Compassion for others

Empower others: Demands that the other person remains involved in their own well-being, as far as possible.

Do what they can – do not pretend to have all the answers.

Do not need approval.

Take care of themselves as well, so they can give more.

They can BE with another person. I.e., not judgmental.

Honest about abilities and feelings. Seeks support when she or he needs help.

Remain for a long time.

3. CLASSIC CAREGIVING STYLES

The Energetic Hero

Willing to do everything. “Don't worry about me!" ... “I don't mind" ...  "of course I will..."  Usually a reluctant listener. Tends to be cranky, irritable. Make others jealous or nervous because of their energy level. Prone to accidents and illness and maintain constant activity as a way of avoiding their real feelings of pain or anxiety of any situation.

The  ‘I Can't Be Bothered’

"Everything is going to be fine" ... "I'm too busy" ...  "You are better than that." Prefers not to be involved and tends to down-play the seriousness of the situation. Insists that everyone else in the situation is over reacting. Is never available to help out. This uncaring attitude is a mask for their fear and their not knowing what to do or how to respond.

The Boss

Always the expert. Full of advice and criticism. "You're not doing it right" -  "Let me handle this" -  "I know about this". Resists other peoples’ opinions. This authoritative approach is the only way they feel some sense of control over an unpredictable situation.

The Time Bomb

Appears to be solid as a rock. Refuses to show signs of stress or tension. Hides emotions. "I'm doing fine." -  "I don't want to talk about it any more" - "There isn't anything wrong". Isolates themselves and tends to be moody. May experience insomnia (can’t sleep) and increased dependency on drugs or alcohol. Gets irritated by the small things. Withdrawal and denial are the ways they avoid acknowledging and expressing their emotions.

The Ones Who Feel Left Out

The ones who are not involved, often including children, ex-spouses, lovers and non-blood relatives, like in-laws, friends, associates or co-workers. Not involved in decision process and do not feel included or supported.

4. DRAMA TRIANGLE

Refer: ‘Games People Play’ – Eric Berne

The difference between ‘Empowerment’ and ‘Rescuing’:

Rescuing: The person being assisted is viewed as ‘broken’, powerless, weak, needing ‘fixing’, and you – the Rescuer’ are more powerful. The Rescuer tends to only feel ‘good’ when rescuing.  Victim will persecute the Rescuer, because they do not like being treated as powerless for too long.

Empowerment:  Despite the absence of resources, the other person is viewed as inherently powerful, able to make choices, when provided with the resources. They are not ‘powerless’ – they are in a temporary low-resource situation.  You provide the resources – if you have them to give - and then walk away, leaving them to exercise choice.

ARE YOU A RESCUER?

Classic Signs:

Can’t switch off your cell phone

No exit strategy

Only feel good when helping

Can’t say ‘No’

Take better care of others, compared to yourself

Too busy for family and friends

Difficulty saying: I’ve done all I can. Now it’s up to you.

Difficulty in setting up boundaries and conditions, and sticking to them.

See people are victims, versus powerful.

Temporary ‘fixes’ – Not sustainable

EXIT STRATEGIES

At what point are you done?

Succession planning

Delegation & Capacitation

Make yourself redundant

What’s next? When there is a cure for HIV, what have you planned to do?

5. CAREGIVING STYLE SELF-EVALUATION

How do you cope and behave in a caregiving situation?  The following questions are designed to help you develop insight into your caregiving style.

EMPOWER OR DISEMPOWER:

·         Does this situation really require my participation?

·         Can I help out without ignoring my limits and boundaries?

·         Does my intervention empower or dis-empower others?

SEEK TO CHANGE THE SITUATION:

·         Is there anything about this situation can I realistically change?

·         If there are things that I can do to alter the external situation, can I negotiate my role or participation without over-stepping my personal limits and boundaries?

·         Do I need support in this situation?

·         What resources are available to me in this situation?

SEEK TO CHANGE MYSELF (MY PERCEPTION):

·         What about  'Me' can I change?

·         How can I adapt by changing by changing my inner perception of the situation?

·         At what point will I relax?

·         At what point will I worry less?

·         At what point will I take better care of myself?

·         What attitudes can I change? At what point will I be able to do that?

·         Can I let go of my need to control?

ACCEPTANCE - SURRENDER - COMPASSION:

·         What about this situation can I accept?

·         Can I just 'Be' in this situation, and just accept it for what it is?

·         Can I just be present, and listen with compassion?

·         Can I surrender to 'what is'?

EXPRESSION & SUPPORT:

·         Do I have someone to talk to?  I.e., a person who is able to simply listen to you without trying to 'fix' the situation or you.

·         Do I give myself permission to cry and feel anger - feel all my emotions?

Always remember... there is no right or wrong choice. Just make the best possible choice you can at that moment in time. Give yourself a break and let go of hindsight and guilt of could have, should have, would have and if only.

6. How effective caregivers take care of themselves

Eat nutritiously.

Enjoy recreation and taking time out for themselves.

Maintain regular physical exercise.

Set limits and boundaries.

Have a spiritual practices.

Maintain an attitude of openness.

Allow themselves to be supported and maintain a support network.

Are active listeners.

Have a sense of humor.

Live in gratefulness and wonder.

7. CAREGIVER RIGHTS

A caregiver has the right …

a.     To open an honest communication with the client/patient, their friends, family and other caregivers.

b.     To express opinions and suggestions when appropriate

c.     To be informed about the financial affairs and other personal matters of the person they are giving care to, in the event they need to take on that responsibility.

d.     To expect the patient to make as many decisions as they can and to put their affairs in order.

e.     To make reasonable requests of the patient.

f.      To take care of their own needs without any guilt.

g.     To express emotions in front of the patient.

h.     To acknowledge their limitations and seek help when it is needed.

i.      To maintain a regular life away from the situation they are giving care in.

j.      To resist the use of illness for manipulative purposes.

k.     To not take responsibility for the decisions and actions made by the patient.