Royal college of psychiatrists

INTRODUCTORY NOTE

My wife, Pauline, died from Alzheimer’s disease at the age of 59. She was 51 when diagnosed after several years of problems. I cared for her at home. For the first 3 years, I maintained my employment, albeit on an increasingly part-time basis, but resigned from work and cared for her full-time for 5 years when her needs demanded round-the-clock attention. She remained in her own home to within 5 weeks of her death, when fracturing my leg put paid to my direct caring role.

Little time may be taken to listen to what carers have to say or explain clinical and service policies. The odd 5 minutes at the end of a busy clinic is not enough; being paraded in front of the ward round is simply unacceptable, but it still happens. A 20-mile trip for family carers just as imprisoned by the patient’s mental illness, geographically and financially, may be impossible.