The Huntington's Scene In New Zealand |
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Articles taken from the Sept. 2003 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand |
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My Dad has HD. He is a wonderful person and an inspiration to me. On January 8th this year Dad and Mum went to Nelson for a holiday. Mum needed a holiday as she hadn't been very well and we hoped a change, a rest and some good old pampering from my sister would perk her up. Unfortunately, it didn't. Mum had a massive stroke on January 10th just two days into her holiday and after 12 hours on life support we painfully made the decision to turn it off and let Mum finally have her ultimate rest.
I have since found a diary in which Mum had written down her ultimate Dream day. It was that she could have a whole day to do nothing but think of herself, to do no caring, no cooking, and to have someone run after her with cups of tea whenever she wanted them. Oh how I pray that she is indeed getting her ultimate day dream for the rest of eternity.
Since Mum's death our family has moved mountains. I am blessed just thinking of the effort by the whole family. Dad has a new home, back on the farm, built right next door to my Brother and sister-in-laws. He is managing his new life well. We know he misses the familiar things of his past 50 years with Mum, but he remains happy, healthy and always trying to achieve (much) more than he should. He is an inspiration.
I won't say it's been easy for him and I know his grieving process is a long way from over.
I am beginning to deal with my grief now that the crazy rushing that started at 3.30am on 10th January has finally ceased. We don't know what tomorrow brings with it and so that makes today the most important one ever, and the best one of all to tell someone close to you that you love them and why.
My son Andrew wrote this story in his English class recently. This is Andrew's story about his Gran
In the holidays my Gran died. She was in Nelson with Grandad and my Aunty for a holiday. She had a good two days, she went walking on the beach and shopping. She collapsed in the toilet and was put on life support, but this was turned off because she was brain dead.
My Uncle was in Napier and he was heading back to Nelson straight away, he said to my Mum, "Are you coming?" So with fifteen minutes to pack mum was chucking stuff in her bag to head to Nelson to support my Aunty with Grandad. This was at 8.45 am and it felt like we had been awake for a whole day already. The first phone call that day was at 3.30am.
After Mum got there and they decided to turn the life support machine off, they took my Gran to a Funeral place to put my Gran in a coffin and then the next day onto a plane back to Napier for the funeral service in Eskdale. Gran and Grandad had lived on a farm in Eskdale so that was why the funeral was out there.
My Brother from Australia came home for the funeral. After the service we went to the Bay-View rugby clubrooms for the after service then we went back to my Uncles place. Gran didn't like any of the family drinking out of the house so we respected her wishes and nobody drank any beer or wine till we got home. It was a long day.
By Andrew.