My husband Greg, my only daughter Kerryn and my only son Mark suffer from Huntingtons Disease.
I also have 3 grand-daughters who are at risk of developing Huntingtons Disease. This is an inherited neurological condition which is characterised by Choreic movements which cause severe wasting plus difficulties swallowing food. Feeding meals can be a very slow process and staff do not have time to feed entire meals.
Greg and Kerryn have been residents of a Nursing Home for the past 4 years.
I visit at mealtime every evening to try to maximize their food intake as there is a staff shortage in the evening and the carers do not have the time, or inclination for residents who are difficult feeds.
I have encountered many difficulties and become very frustrated with the staff re ensuring that my family obtains adequate nutrition.
I’m involved in the Lantern Project to advocate for my family and also other Nursing Home residents who are malnourished and unable to feed themselves, to explore how they can be served and fed nutritious meals so that they so not go to bed underfed and hungry.
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