A Caregivers Perspective
by
Pauline M. DeLury(
A paper presented to the Huntingtons disease Conference 2005, Wellington
15 October 2005
Abstract
If you compliments to provide earnest bearing to your love one, you must also take care of yourself. Huntingtons is a familial disease requiring constant variant to change. Further complicated by repeating through the generations, registration is one key to long term sustainability. The principles of actively affectionateness for the person with HD as well as for your self and conclusion creative solutions to practical problems for sustainable support are considered. This is the chromosome mapping of one familys story, three generations of care giving for loved ones with Huntingtons disease and lessons learnt along the way.
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Synopsis[pic]
Introduction:
I.Adapting to constant change
A.Our family - three generations of Huntingtons disease
B.Adam - Juvenile Huntingtons
C.Burden by association - siblings
II. ready caring, active choices - adapting to change[1]
A.What enables us to go on?
B.Leaving our historical stories behind
C.
Moments of connection; the threads that bind us together
III.Sustainable support
A.Sustaining the travel by sustaining myself - 6 basic needs
B.Adaptation as a key to long term sustainability (Lizard analogy)
C.Creative solutions to practical problems
IV. charge expect alive
A.Trip of a lifetime story - hope and reality
B.What made it successful - teamwork
C.One day at a time - You can live in fear or you can dance with her.
Conclusion: I may non have gone where I intended to go, but I think I have ended up where I needed to be.
Douglas N. Adams 1952-2001
[pic]
Adapting to Constant change
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