July 15, 2014

Family stories of living with dementia

These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

A Son’s Handbook: Bringing Up Mom with Alzheimer’s/Dementia
by Stephen W. Hoag






The ten year journey of a son as he cared for his mother with Alzheimer's disease.  Compelled by the love for his mother the author provides a tender, dramatic and often humorous account of the unforgettable years he shared with his mother as they faced the difficulties associated with her disease.  His chronicled anecdotes and articulated moments will bring comfort to family members and care givers who must complete the daily tasks and overcome the obstacles accompanying the care of those afflicted with this illness.

Ice cream in the cupboard : a true story of early onset Alzheimer's
Pat Moffett
 It started with strange behavior a hostile outburst here, a peculiar lapse of memory there. Then it became violent. The beautiful, vivacious Carmen Moffett was behaving in ways her husband Pat could not understand. Their marriage had been a long love affair. Together, they raised five beautiful children in Great Neck, New York, and were looking forward to planning their retirement together. Then came the outbursts, both verbal and physical, and the forgetting. Confused and increasingly nervous, Pat consulted doctors, but no one could find anything physically wrong with Carmen. Worse yet, she could not remember doing the things that rattled Pat. Finally, several years later, incidents at Carmen s work forced her to another doctor, Gisele Wolf-Klein, who diagnosed the devastating illness. As she slipped away, Carmen reached out for Pat.

Learning to live with Huntington's disease : one family's story
Sandy Sulaiman.
Huntington's Disease (HD) is a hereditary illness passed on via a defective gene. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Learning to Live with Huntington's Disease is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD. This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness. Told by the sufferer and other significant family members, the individuals describe the burden of watching yourself and others for symptoms of HD, including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent tendencies. The family recounts the challenge to remain united and describes how they approached issues such as whether or not to be tested for HD, how much information to disclose to relatives, whether to have children or not and guilt if one sibling inherits the illness and one does not. Both honest and positive, the author stresses the importance of re-inventing yourself and your present, prioritising relationships and retaining a sense of humour.

Activities to do with your parent who has Alzheimer's dementia
This book provides a selection of user-friendly activities that will help maintain your parent's self-care skills, mobility, and socialization. These tasks encourage success and feelings of self worth, and offer imaginative ways to interact with your parent. The Activity Assessment Form objectively allows you to look at each of these tasks. It can help to determine the setup and environment that works best with your parent. This written format is a tool which also encourages consistency between caregivers. In this book you will find: -Over fifty activity ideas with implementation suggestions -Activity Assessment Forms -Alzheimer's dementia support sources -Caregiver burnout prevention ideas -Definitions of frequently used medical terms -Room by room safety suggestions -Home and personal safety assessment...
The author is an occupational therapist and the child of a parent with Alzheimer's dementia. In this book she makes use of her personal as well as past work experience to provide support to others who find themselves in a similar situation.

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