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WHERE TO GET HELP: INFORMAL NETWORKS
This title includes family, friends and neighbors – the carers who provide the flexible 24-hour a day help, often in emergencies and usually delivered with affection if not love. The vast bulk of this network are women, estimated to number about 1 1/4 million. Some of the smaller voluntary groups and independently set-up community schemes can also be included under this heading as they too are able to act more flexibly than the formal networks.
Many carers carry on without help, never involving family members (if they have them) or calling upon friends and neighbors. The act of caring can then become a burden, so much so that the carer begins to feel guilty about feelings of resentment towards the person they care for. Many excellent books have been written which analyze this role of being a carer, and they offer very practical advice on how to cope with the situation. The extra burden of dealing daily with someone who is confused can be especially difficult and these carers need special advice. The need for help and guidance has led to the formation of organizations such as the Carers National Association, which fulfils this role.
What is evident on meeting carers of both the elderly and the elderly mentally infirm is that they all have similar problems, with personal variations, and yet many feel that they are the only carer experiencing these problems. Many carers feel angry at being put in a caring role, sometimes wanting to direct this anger at the sufferer and sometimes at other family members or professionals for not helping more. Many feel frightened at the thought of calling for help in case people see it as a sign of not caring. Some carers feel obliged to give up jobs and personal relationships, often as the result of badly thought-out professional advice. They then have to cope with feelings of resentment. Some carers are put into the dilemma of feeling they have to choose between their elderly confused relative and husband, children or perhaps their job.
Many carers get acutely embarrassed by the behaviour of their confused relative. Incontinence, eating habits or bad language can appear monumental problems, keeping the sufferer and carer alike prisoners at home. Family, friends and neighbors should be able to help by sharing some of the more exhausting aspects of caring. Voluntary and community groups can act as an information service which can result in the carer getting the counseling they need. Most importantly these groups can put carers in touch with each other and arrange meetings. It is at these meetings that carers discover how many of them have the same problems and how some have come up with answers. Many schemes organize carers’ groups that not only have a much needed social role but also arrange for visiting and support. In this way carers can get specialist advice on their sufferers’ problems and if necessary be directed towards extra services or professional help.
Informal networks are not the answer to every problem; in fact for many carers there are no easy answers and sometimes very difficult decisions concerning family members have to be made. The fact that so many people do care is heartening in itself, but there is a growing anger that this role is being taken for granted and that only small-scale volunteer groups are making the headway needed to help so many people. Most carers are happy to go on caring in the right circumstances given the support and advice they feel that they and their sufferer need.
The majority of our dependent elderly survive at home, both physically and mentally, because of this system of carers that make up the informal network. The strains are already enormous and if great inroads are not made into helping this group, both in financial and planning terms, then a large number of them will be forced to give up. For many obvious reasons, that would be a tragedy but perhaps cynically in our current economic climate it would also be hugely expensive. It is far more cost-effective to help the carers now than pick up the bill later.