Issue 101, June 2008
My wife, Bronwynn, is a resident of Amaryllis House, the dedicated Huntington's Disease care facility at Woburn, Lower Hutt.
A review by researcher, Alison Gray, has confirmed what has been evident to me over the past three years, that this facility is the best place for Bronwynn. After Bronwynn was diagnosed with HD, I have endeavoured to provide the best care for her and the team at Amaryllis House is achieving this objective.
Amaryllis is Bronwynn's home now and she is treated as a resident in her home, and as her husband,
I am able to visit her at any time. A cup of coffee is always there for me when I want it, and if I have had a long day at work, a meal is sometimes offered. This is much appreciated and a way in which I can spend time there with Bronwynn as she is now no longer able to carry on a discussion. Family Christmas dinners and parties are also ways for family members to spend special time with their resident.
We have experienced care provided by Rest Homes which are very good "homes" for the elderly but
inappropriate for younger residents such as Bronwynn. These units have been designed for older people and all activities are for the elderly, most aged over 80.
Bronwynn had a respite break at one rest home which she labelled as "The Palace".
This was a wonderful home with plush furnishings and there were many retired farmers or farmers' wives in residence.
However, the activities were for them and not appropriate for a woman in her forties. An afternoon nap
was mandatory at a time in Bronwynn's HD journey when she would have benefitted from a walk rather than a sleep. Bingo was a favourite activity at another rest home. Prizes of chocolate bars were awarded to the winners. Bronwynn would end up with pockets loaded with chocolate bars as the elderly women would treat her as their daughter and say "Here you are, dear. You have this chocolate."
The review also highlighted that involvement with mental health services has largely been eliminated whereas most residents had some involvement prior to arriving at Amaryllis House. This is an outcome which I am very pleased with. Bronwynn had three one week stays in a psychiatric unit and several as outpatient visits prior to her move to full time care. The three admissions were probably the three hardest weeks in my life and therefore, must have been extremely difficult for Bronwynn at a time when anxiety was her major symptom.
On the first visit, Bronwynn was ushered into a room which had a hard bed on which she was asked to sit. At the end of the bed was a "shock treatment" machine which amazed me. I didn't realize that these things still existed. "Take off your belt and remove your shoe laces" was the next instruction. "We don't want to see you harm yourself". Then a move to "her room" - a stark room with no curtains, a small window in the locked door to the main room and bars on the outside window, almost a prison cell and a far cry from her large carpeted room with nice floral drapes and an ensuite which Bronwynn now enjoys at Amaryllis House.
As a treatment for anxiety, I find these conditions are the complete opposite of what I would expect and only the administration of strong medication produced the result required for Bronwynn to be released at the end of the week.
Duplication of the service provided at Amaryllis House elsewhere in the country is the aim of the review and I thank Alison Gray for producing the evidence that the Amaryllis House model works extremely well.
I also wish to thank Dorothy Tortell for her hard work in initiating the review and those who generously provided their time and thoughts so that the review could be completed.