Life is for Living 2005: 25 New Zealanders living with disability tell their stories
Alma - Supported by her family and the community
Alma is 66 and has lived all of her life with her family, much of it in the family home in Te Awamutu. Alma was brain-damaged at birth and has been cared for by her parents and then her brother and sisters. She has lived with her brother Harold, who is now 76, since 1989.
Alma is well known in our community. I take her out with me shopping etc. Alma goes to a voluntary job at the Salvation Army shop one day a week. She loves the job.
Her sister Colleen says, "Alma attended school until she was six or seven and then stayed at home. Alma can do tasks around the home like housework, folding the washing etc. She cannot be left alone for a long time, or at night, and does not have a good understanding of danger and safety issues."
She is very trusting, perhaps too trusting, of people. She is very sensitive but, with family support, is very social.
Being a full-time carer is a responsibility that Harold finds more stressful as he gets older. He does belong to a local walking group and gets out with the group three times a week while Alma is in day care. Financially he has made sacrifices to care for Alma - it would be good if family members could be paid for care, because if we were not available the state would be providing care. Alma does go into respite care for about 15 days a year with a family who have known her for a long time. Other times, when Harold needs a holiday or a short break, she comes to live with me and my family. I see her every day and look after her personal needs, but she showers herself and looks after herself well.
"Alma loves being with people, she likes being part of a group, both to contribute and to have fun in her own way."
We do worry about Alma's future if Harold and I are not there to look after her. She has always been with family and we would never consider putting her where she will not be happy.
We are aware that some time, hopefully well into her future, we will have to make some hard decisions.
She goes to Gracelands five days a week, with two of those days spent at day care. She was one of their first clients so it's like a second home for her. She likes the gardening group there, and does art too. She is great with children. Once a month friends take her to a country music club and she loves it. It is emotional for Harold and myself to see her up there singing with a very supportive group of friends.