Carer's Pages

Details of events for carers can now be found on the Events page.

Vale Maria Mackell

It is with great sadness that we report the death in hospital on 7 August 2008 of Maria Mackell, the Association's much loved Carer Support Coordinator.

"You extended a caring hand, and made a difference to so many."

Our sincere sympathy goes to Roger, Hillier and Austin.

Read our tribute to Maria.

(Added 24 August 2008)

Planning the Transition from Hospital to Home

NSW Health recently promulgated a new standard titled Discharge Planning: Responsive Standards (Revised May 2007). This includes, at annex D, a Patient Information Brochure titled Planning for your transition from hospital to home.

This brochure is a useful checklist of things to raise with hospital when the person you care for is close to being discharged. It will help you with the questions you need to ask of the GP and hospital staff before the person you care for is discharged from hospital. Please contact us if you would like a copy.

The Carers' Photo Voice Exhibition: Making the Invisible World of Carers Visible

The Carers Photo Voice Exhibition is a most unusual photo exhibition. It is the work of six carers of people with Huntington's Disease, who decided to make the invisible world of caring, more visible to others.

The carers set out to photograph things or issues within their everyday life. To safeguard the privacy of the person they cared for, and the privacy of other family members, it was agreed by the group that the photos would not include people. The photos show issues that affect carers, with a special degree of detail not found in other ways of collecting information.

The words are the "voices" offered by the photographer to explain how or why a photo expresses some aspect of their every day life. Words accompany the photos as equal partners, but are used in different ways, shown either with the photos or separately. The exhibition is a resource for working with carers in several ways to:

Highlight carers' individual experiences. The process can help through identifying and expressing issues, ideas and positive and negative aspects of every day life.
Help carers share experiences with each other. We know carers really value and develop from the advice and support of other carers. We see this as a valuable a resource for our work with geographically or socially isolated carers, in group work or work with individual carers.
Raise awareness in the wider community about the quality of life for carers. Words can be presented with the photographs. In this way, they directly share incredible detail of the carer's experience with others who want or need to know. Or they may be kept separate, allowing for many different reactions to the world of a carer.

The exhibition is now "on tour" and it may be coming to a town near you!

Quite a few members in regional areas expressed a wish to see the exhibition, but were unable to come to the launch and exhibition in Sydney. In May, we took the exhibition with us on our regional visits to Newcastle, Taree, Port Macquarie and Coffs Harbour. Over 40 people viewed the exhibition, and most filled in a comments form, giving us a real sense of what people found useful or illuminating.

We're continuing to learn about the invisible world of caring through these photos and the words that accompany them and we plan to take them with us on our upcoming country visits. Please contact us if you would like to be advised of future times or venues where Photo Voice will be on display.

The exhibition is also available on this website.

Highly Recommended - Where Carers Advise Carers

"Highly Recommended" is the name of an occasional Gateway column featuring helpful products and services recommended by our carers.

In this issue, we review The National Relay Service (NRS).

The NRS is an Australia-wide telephone relay service enabling people who are deaf or have a hearing and/or speech impairment to communicate with anyone who uses a standard telephone, and vice versa.

The NRS is available 24 hours a day, 365 days a year. Calls within Australia are relayed at no additional cost. Thousands of Australians communicate with family and friends and conduct business through the NRS everyday.

For any enquiries about the NRS or specific relay options, please contact NRS Customer Service, Monday to Friday during business hours (AEST).

Voice 1800 555 660
TTY 1800 555 630
Fax 1800 555 690
Web National Relay Service

Here's what one of our carers, Shirley of NSW, told us about it:

"Recognizing that my daughter, Kathryn, has great problems communicating, and knowing that she relies on the telephone to keep in touch with friends, we contacted the National Relay Service. Now, if Kathryn needs to telephone a friend, or vice versa, she dials the given number and an officer contacts the phone number, explains the difficulties, and then deciphers the conversation ( if necessary). We have found this to be a big help which gives Kathryn more independence!".

If you have used a product or service that you think other carers might find beneficial, phone Judy Fullston, Family Support Worker, on 1800 244 735 (freecall for people living in regional NSW), (02) 9874 9777 or send an e-mail: hdassoc@ahdansw.asn.au

Working Carers Support Gateway

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The Gateway is a State-wide initiative of the Disability and Aged Information Service Inc (DAISI). The Gateway website provides information and support for people who juggle paid employment with unpaid caring and assists them to manage their work and care responsibilities. The Gateway project encourages support for service providers to have after-hours services, and employers to offer flexible workplace practices. The Gateway team has developed the project in conjunction with working carers, employers, service providers and carer support organisations on an advisory panel and reference group.

The Collected Wisdom of Carers