Lay carers of patients admitted to a hospice: how caring restricts their lives

The aim of this paper is to examine how caring for a terminally ill person in the domestic home restricts the lives of their lay carers. Fifty-nine lay carers of hospice patients were interviewed in the hospice approximately a week after the patient's admission using a structured and primarily closed choice schedule. Respondents were mainly the spouse or other close kin of terminally ill patients admitted to the hospice. Respondents reported that in the month prior to their admission, patients were highly symptomatic and required a great deal of help with activities of daily living. Forty per cent of patients required help. Three-quarters of the lay carers reported receiving help from one to three other lay carers in looking after the patient. Two thirds of the carers said that either the patient or they themselves, o both, would have benefited from moe help. Ove one thid of carers reported that in the month prior to the patient's hospice admission their own activities had been severely restricted, especially in the areas of visiting friends and relatives and going out to social activities. Activities least affected were looking after other members of the household and going out to paid work.