Parents or foster parents normally provide care for babies and children, but other people of all ages may need care if they are dying of a terminal illness, or living with a condition that makes them physically, cognitively or psychologically dependent on others. Often frail older people need support. The degree of care may range from occasional help with tasks such as shopping and cleaning, to personal care such as assistance with eating, showering and toileting. It usually encompasses both physical and emotional aid, and may involve overseeing a person’s general welfare as well as responding to loneliness and social isolation. Care can be provided by paid workers or by friends or family. Many people both give and receive care at different stages in their lives.
Ideas about what constitutes the best care for a person have changed, influenced by each situation and different theories. Though families have usually been the first to help when care is needed, institutional care was promoted during most of the 20th century for some people, notably those experiencing mental illness or intellectual disability, and frail older people needing support with daily tasks.
After the Second World War, consumer organisations of disabled and elderly people and their families emerged. Their lobbying brought about significant changes, including the introduction of ‘community care’ – integrating previously institutionalised people into their local communities. There was also increased support for elderly people to stay in their own homes as long as possible, rather than entering a rest home – a policy called ‘ageing in place’. This recognised the preference of older people to maintain whatever level of independence they could achieve. Although a range of support services was provided, much of the responsibility for this care fell on family members.
At the time of the 2013 census, over 490,000 New Zealanders were providing unpaid informal care for someone. Carers are more likely to be women because of social expectations about gender roles. It is usually mothers who care for disabled children and young adults. Daughters often, but not always, take responsibility for frail older parents. Because women have a longer life expectancy, wives are also more likely to end up caring for husbands. Many older people care for other older people, so it is not just a case of the young looking after the old.
Reasons for home care
People look after family and friends for a range of reasons: love and long association, a sense of duty (for example, the marriage vow to care for the partner in sickness and in health), a belief that it is what others expect, or fear that the person will deteriorate if they go into an institution. They may have no choice if the person in need is a child, or a parent who does not qualify for residential care.
Challenges of home care
People may wish to care but not realise what is involved until they are committed, and later come to resent the burden. Sometimes this can lead to destructive behaviour, including abuse, and a deteriorating relationship with the person being cared for and other family members. To care for someone effectively, the carer has to be able to cope with the demands of the situation and maintain a positive relationship with the person being cared for. Carers often need a number of different forms of support.
The rewards of caring
Although a person with dementia can be difficult to care for, there are rewards. One woman said of her husband ‘he’s lovely just the same. I sit on the couch there with him and never a night goes by that he doesn’t put his arm around me and … we just sit and watch TV or something like that.’1 The importance of a relationship continues in many cases – another woman said ‘my husband is happy at home and I am happy to have him at home … seeing as he’s my husband and I can look after him I would rather keep him as long as I can.’2
If a carer interrupts their paid work to provide care it can have career and financial implications for them later. Often carers do not get support from friends and other family members because of misunderstandings about the seriousness of the situation, geographical or emotional distance, or feelings such as fear or distaste about the condition or illness.
When caregivers are put under great pressure, for example those caring for a child with complex needs or a confused elderly relative, they can become exhausted or depressed. This may lead them to withdraw from former social activities and become isolated.
Caring for the carers
Caring for someone at home is often an all-day, every-day commitment. Carers can apply for a carer support subsidy, which first requires a needs assessment. They are then given a number of days of respite care per year when they can take a break, either as occasional hours or in a large block. The subsidy helps cover the cost of a paid carer during that time. This can include payment for care by neighbours or other family members who are not living in the same home. It can also pay for a person’s short-term care in a rest home or hospital.