How caring can take a hard toll

Raising children is probably the hardest but most rewarding job any individual could undertake. However, it is widely acknowledged that there are not nearly enough supports in place to assist those who take on such a responsibility.

Can there be any other job which demands so much yet does not require any qualification to perform the duties required? Most parents need ongoing support and guidance as their children arrive at the various stages of development; this support is not widely available. Imagine what it must be like, then, for the parent who must take on the additional responsibility of a disabled child or an elderly relative. Indeed, unless you have been in this position, it is virtually impossible to understand the strain that is imposed on the carer in such circumstances.

In the case of the care of an elderly relative, it is more often than not the eldest daughter in the family who is endowed with the responsibility. She would not have chosen the role, but somehow it arrives as a type of inevitable inheritance. Alternatively, it can be the member of the family who lives nearest the elderly relative. There is an interesting phenomenon: once this caring role has been established, those who are on the periphery of the situation become experts on how to care properly for the dependent individual. Advice on and criticism of caring practices are readily provided - by individuals who will rarely contribute to the grind of daily care. (Or, if they do, it will be on their terms and at a time which suits them. And to exacerbate the irritation, the elderly relative will often view these rare contributions as the highlight of his or her limited life.)

For parents of a disabled child, the situation is slightly different - but the end result is the same. Friends and relatives often do not know what to say in the event that a new arrival is disabled. Once the initial awkwardness is overcome the empty platitudes are plentiful. "You're wonderful people . . . He's a gift from God . . . God makes the back to bear the burden." Such words are not helpful to parents of disabled children. Offers to babysit, or to make sure the disabled child is included in the general milieu of neighbourhood activities, would be helpful - but are rarely forthcoming.

The outcome for the carer in both cases is a feeling of isolation and despair, as there seems to be no end to the responsibilities. There is a number of symptoms which the stress of the extra burden of care can bring. If you are experiencing panic attacks and cannot figure out why they are happening, it may well be as a result of the stress of caring for a dependent individual. Time for yourself and pursuing your own needs are eroded when you take on a caring role. On a conscious level you may be coping, but the panic attacks can be your body telling you that it is time to take stock and change the caring arrangements.

Depression is not an uncommon symptom for those thrust into additional caring responsibilities. You may lose interest in activities that you formerly cherished, or simply feel you have no time to pursue them. You may feel tired for long periods. And there are inevitable feelings of being overwhelmed and helpless to do anything to improve the situation.

If you experience any of these symptoms, they are a perfectly normal response to what must be viewed as an abnormal situation. We all have needs which must be nurtured; when virtually all of these needs are swept aside by demands of the caring role, it is inevitable that symptoms will develop.

So what can be done to assist the person who is given this onerous task? Here are some steps that should be considered:

Recognise the stress. The caring person is often the last person to recognise that they are in an extremely stressful circumstance. It is vital for the carer to be objective and realistic about the demands of the caring role - it is highly demanding and time away from that role should be planned and maintained on that basis.

Accept all offers of assistance. The idea that you are the only person capable of caring for the dependent individual must be dropped. Actively seek assistance and accept all reasonable offers of help. Neither a hero nor a martyr be.

Start thinking about yourself. This is difficult for a committed carer but essential for the long-term wellbeing of all. Ask yourself what activities you enjoyed prior to taking on the caring role and think about how you would pursue them now.

Talk to other carers. Perhaps the greatest stress on a carer is the feeling of isolation and that you are the only one who has these feelings. Contact with other carers will very quickly explode that myth.

Consider the consequences of not taking care of yourself. Caring for a dependent individual places a considerable strain on a family unit, from which casualties do occur - such as marital breakdown. Perhaps a less obvious outcome is the impact on the carer's health.

A notable phenomenon is that when the caring role is ended, either through death or placement of the individual in professional care, the carer's health can deteriorate rapidly. The enormous release of pressures seems to have an impact on the immune system. It is essential that carers manage family life and their own health needs as a priority at all times.

Pamper yourself. The carer will find it difficult to enjoy something outside the daily routine. There may be the inevitable feelings of guilt. However, it is essential that you get used to treating yourself on a regular basis.

You are not helpless even though you may feel that way. If you have read through this article and concluded that it might be useful for somebody other than you, think again.

Regardless of how difficult your situation is, there are always steps you can take to improve it. There are people you can contact who will be fully sympathetic to your circumstances and can make some concrete suggestions on how to improve them.

Call the National Carers Association on freephone 1-800-240724 for advice and information. Investigate the possibilities of receiving practical, in-home support and find out the location of carers' resource centres, where you can meet other carers.