1. Timing

What were we planning to do with our life when suddenly this responsibility is thrust on our shoulders? Were we into motherhood, or furthering our education; getting to the top in our profession? Or were we retiring and planning to do all the things we had put off, for the sake of others, and now it was our turn? Would our goals have to be put on the back burner or abandoned forever in order to assume the care giving role? Many have previously sacrificed themselves and have delayed gratification - only to be denied reward permanently.

They must grieve that loss. Many who do not grieve successfully become resentful and bitter when facing their shattered dreams. Caregivers must have the opportunity to grieve their own loss before they can successfully embark on this new role. Most attention is paid to the losses of the person with the disability or illness. Few realize the caregiver is also grieving.

2. Attitude towards disability/disease

Youth, productivity, success, power, beauty and independence are the values of importance in our society. Those who cannot attain or maintain them are considered burdens. The aged, the disabled and the dependent become worth less. The work of those who care for them is also devalued.

Disability is seen as a failure. A family feels shame at having such a secret. The deformed body is something devoid of all beauty. Indeed the disabled person is not just disabled but is also dehumanized, devalued and degraded.

Many of us have politically incorrect attitudes hidden inside. The person, who has adopted these prevailing attitudes, will be ill equipped to handle the future. Conflict can lead to marital break up. Women with disabilities are more frequently at risk for spousal abuse. If we, or those around us, consciously or unconsciously marginalize the disabled, sick, dependent or frail, it will be difficult to see joy, purpose and value in the role of caregiver.

Some religious beliefs contend that disability is a punishment. Do we not say, "What have you done to deserve this?" Being with a disabled person can lead to embarrassment, fear and discomfort. The person brought up with these beliefs will need to make monumental changes as to how they view disability. Conversely some get through the care giving role because of these beliefs - it is their punishment, it is the sacrifice they make, it is their duty.

Sometimes those negative connotations get them started but they later discover the joy. Many never do find the joy and life is one of a victim. The attitude we have chosen will colour how we will view disability and our role.

3. The previous relationship

What was the quality of the relationship before disability struck? If we no longer "care about" each other, the ability to give care will have already drained away. It is hard to bath and diaper the parent with compassion when s/he abused us as a child. Can we willingly give care to a spouse who long ago ceased to show us love?

Yet sometimes through role reversal, relationships blossom in ways never thought possible. If mother had not become dependent or husband had not needed to take over the housekeeping chores, joy and accomplishment may never have been experienced through the changed role.

4. Knowledge

There are things we need to know about the disease, supports and resources available, financial assistance, respite care, transportation for the disabled; Caregiver support groups, day programs. We need all this information on day one. For some caregivers the search is an acceptable challenge, for others it leads to anxiety, panic and fear.

5. Financial and other stresses

There are always priorities for where money is spent. It can influence the decision to prolong life or let it slip away. If the money is needed now in care - what about the children, the grandchildren and their further education? What if having the wish to live requires buying support services? What if that means selling the home, going into debt? The decision will be based on our values. Youth v.age. Healthy v.disability. Will the caregiver forgo paying for respite for fear of been seen as selfish or weak? There is often disagreement between family members as to how money is spent or "wasted." Much family dialog is needed to create win-win situations.

6. Support systems

My Mother cared for my father who had Alzheimer's disease. They came from a social structure where you did not air your dirty linen in public. They believed that one made ones bed and then had to lie on it. Where did this get my Mother? Alone, and with no support system. How do our friends and family perceive the validity of the role of caregiver? They may be supportive, or maybe not. Therefore it is essential that we surround ourselves with like-minded people who value our role and value us.

Caregiver support groups have the main purpose of validating the individual's journey. Secondly we must take respite to restore our wholeness. Time away from the responsibility is not a luxury but a necessity. The ability to cope is dependent on the perception of burden. If we see ourselves as victims we can blame our inability to cope on outside forces. We can stagnate by saying "poor me."

Many people are paralyzed by the fear of having to handle a crisis alone and spend their time worrying about "What if..." When self-esteem has long ago been buried, the individual believes that anything done will not be good enough. If doomed to failure, why try? All these belief systems can be tested for validity when we are supported by knowledgeable health care professionals, those in similar situations and staff of the agencies associated with the relevant disease - Alzheimer's Society, Cancer, MS, Parkinson's, etc. Without validation for the role we are playing, we burn out as care givers.

It is worth remembering that crises faced improve the skills needed to face the next. Those who don't learn from past experience will find it more difficult to problem solve and face the uncertainties of the care giving role.

We have looked at 6 factors that will influence care-giving ability. Factors that will affect the feelings, attitude and skills brought to the task. They will impact on the burden felt and influence the quality of life the disabled person and carer will experience. If you have identified with any of these factors, you can with time and help, start to deal with their influence on your care giving ability.