Personal Experiences Shared  By Mark Chapple

 Our story: to date

 INTRODUCTION

 This is a copy of a speech that was delivered at the recent H.D conference in Wellington.

My name is Mark Chapple and I am married to Monique who has H.D and I have a 4 ½ year old daughter Mackenzie who is at risk.

 I have been to the last 4 conferences here in Wellington and would like to thank those responsible for organising another successful conference.   I always walk away with a sense of hope, a better understanding and with new friendships.  I know at times it can be challenging to listen to the papers and their content but believe it is good to have the opportunity to learn and discuss the issues with our peers.

 Back in April this year Dorothy approached me and asked if I would make a speech at the conference relating to my personal experiences as a primary caregiver for my wife Monique who has Huntington’s Disease.  I also spoke at the last conference about the issues regarding Huntington’s that were important to us at that stage in our lives.  The issues we were dealing with at the time included educating ourselves about Huntington’s, the predictive and foetal testing programmes and dealing with the “on-set” of symptoms.

 I looked back at what I talked about during the last conference and it surprises me how much things have changed - such is the progressive nature of H.D - and even how some of my views have changed with it or possibly mellowed in time.

 I chose to return and continue the story of my family as I believe what I have to say is far more positive than what I could convey last time.

“Previously “

Monique’s predictive testing

I should take some time to quickly go over my previous speech so those who were not here can be “filled in” – I intend to talk in more general terms so if you have specific questions about any issues feel free to interrupt and ask them.
    As I said earlier I am married to Monique.  I have known Monique for sixteen years and met her when she was 20 years old.

Monique was a very attractive and hard working girl who often held down two jobs.  She completed a hair dressing apprenticeship before going overseas where she travelled extensively through Europe and when she returned to New Zealand she came and lived with me in Wellington.

 In planning a future together we thought it best to find out a bit more about the genetic disorder which was in the family.  It turned out to be fortuitous that we were living in Wellington in 1995 as it was the only city in the country at the time that had Geneticists and at the time a support group was operating which was set up for the first group of people in the region to go through the predictive testing programme.

 What I remember most is Monique’s sense of relief and belonging realising that what these people were sharing was what she had been dealing with silently all of her life.  Monique realised she was not alone and continued to seek knowledge from this courageous group of people in a supportive environment.

 Monique expressed to me on several occasions that she thought living in doubt and not knowing if she had H.D was probably harder than knowing if she had a positive test result.  Monique chose to enter the predictive testing programme.

 In 1995, here in Wellington Monique received a positive tests result - confirming that she had the defective gene which meant she would one day develop Huntington’s.

 It was devastating news for Monique and a day we will never forget.

 Foetal testing

 The next time that Huntington’s was brought to the floor was when we started to plan a family.  After discussing the issues relating to having a child when we knew of Monique’s positive test result we both agreed that we should make the most of scientific advances and take part in the foetal testing programme.  The plan was that if the foetus had a similarly defective gene we would terminate the pregnancy and try again.

 Where the predictive testing programme was hard for Monique I now realise that we were in no way prepared for what the foetal testing programme was going to be like.

 The sampling was an especially difficult period for Monique and those two to three weeks following were very stressful as the excitement of being pregnant was over-shadowed by the fear that you may possibly lose what you desired because of a positive result.

 The result that was returned us was something that neither Monique nor I were aware of.  That was that the test was inconclusive, the sample was contaminated.  This meant that some of the mother’s cells were taken with the CV sample and a definitive “yes or no” answer could not be given to us.

 The affect of the result was polarising - we had a pregnant mother who had taken all her strength to conduct the foetal testing in the first place and was now faced with a much more difficult set of circumstances to retest and a father who was still seeking the information both parents had initially wanted so they could make an informed decision.

 We had two weeks in which to make a decision regarding retesting and in that time we sought counselling from several professionals.  After a lot of discussion it was decided the ultimate responsibility lay with Monique and that the decision would be made by Monique and that as her husband I would support her in whatever decision she made.  Monique chose to continue with the pregnancy.

 We now have a beautiful little girl called Mackenzie who is 4 ½ years old and as I mentioned earlier she is at risk from Huntington’s.  Mackenzie is the highlight of our lives and we could not begin to imagine life without her.

 My views have changed slightly now that Mackenzie is born - in that the genetic information we sought prior to the birth we now consider to be Mackenzie’s information for her to do with what she wants.  In the future she may or may not wish to know her genetic make up and if she does we will be there to support her.

 Onset

 Motherhood was Monique’s dream and she proved to be a very loving and capable mother.
If at the time I was asked about HD - I would have said with some confidence - that I knew all I needed with regards to the course that the disorder would take and had some knowledge of the latest medical advances and research.

 I was however not prepared for what happened next.  In hindsight, Monique had been in denial of her predictive test results and that she was showing any early symptoms.

 Symptoms were a topic which I thought we would talk about when she had come to terms with it and when she was ready. The issue was never openly discussed.   Monique may have been quite oblivious to these as they were only subtle and not really affecting her everyday life

 I accompanied Monique to an appointment with a doctor for severe headaches that had been recurring for sometime.  During the visit the doctor (a neurologist) assessed Monique and told her that in his opinion she was showing early symptoms of HD.  As you can appreciate this news was most devastating to a new mother who had not asked for or was expecting such an examination and who was in denial of her diagnosis.

 Monique in her usual stoic manner seemed to take the news in her stride.  The following week I was out of town for work but spoke to Monique daily.  I became concerned about Monique’s state of mind and asked for my mother to visit and spend time with the two girls.

 When I returned on the Friday night Monique was fully delusional and confused.  To the point where she thought I was her cousin, that Mum was a cleaner in a halfway house and Mackenzie was stolen and should be returned to her rightful parents.

 My mother advised me that Monique had been completely coherent and looking after the baby but had become very quiet during that Friday afternoon and not spoken until I returned.  Since that day - which was Monique’s birthday - she has been in and out of psychiatrric wards in various states of psychosis, delusion and confusion.

 She could not be left alone, not because she would intentionally harm herself but because she could not safely function on a daily basis.  Simple tasks like washing and feeding herself would not be completed without prompting and care for Mackenzie became a responsibility left entirely to others.

 I moved back to Christchurch 3 years ago where my family lives and both Monique and I have a lot of friends.  In this environment Monique improved but still needed full time nursing care.

 After almost one year the psychosis which was a major component of Monique’s symptoms - although still present seems to be controlled with medication.

 The main symptom now which was integral to the mental illness and dementia - is a severely reduced short term memory - which is a permanent loss.   The memory loss meant that the simplest tasks such as taking the baby for a walk, cooking, reading, personal hygiene or even getting changed for bed was not possible.

 I had a medical professional make comparisons of Monique’s condition regarding her mental health to “a person with a moderate to severe head injury” or “having a memory that was two standard deviations below the mean for the age group 60-70.”  In a bizarre kind of way it is this short term memory loss which protects Monique from the reality of what is happening to her - so she seldom appears distressed, irritated or frustrated.

 So that is where we were three years ago and my goal at the time was to keep Monique at home for as long as possible and to ensure that the family unit and bonds remained intact.

 Full time care

 Whist living in Taranaki I was lucky enough to have a visit from our friendly social worker one day when I was taking Monique through the A&E department of the hospital during “a psychotic episode”.  She was probably surprised and a little alarmed by what she saw and helped me put in place some homecare for Monique and pre-schooling for Mackenzie.  In hindsight it seems an easy thing to do but as the primary caregiver my days were so full with dealing with the situation in hand that I had not considered my options.  I am grateful for that help and guidance.

 That home help was transferred with us to Christchurch and worked well.  Nurses would look after Monique and Mackenzie from 8:30 to 5:00 daily to enable me to continue working.

 The psychosis that Monique suffered had a common theme and one which was manageable and rather comforting to Monique.  Unfortunately as acutely as the onset of the previous episode - Monique had another episode while we were staying with friends at a bach in Kaikoura.

 The underlying theme of this psychosis was rather traumatic and meant that Monique would get very uptight, agitated, upset and even violent.  This would happen very rapidly and with no easy way of defusing the situation.

 Monique was spending more and more time in Sunnyside - the psychiatric facility in Christchurch.  The stays were increasing in duration and regularity – unfortunately the environment there was not suitable for a young Mother with HD.

 After a further six months I had to make the most difficult decision - which was to admit that at home I could no longer give Monique the level of care that she needed.

 Where previously Monique ultimately made the decisions regarding Huntington’s (as it was up to her to learn as much or little as she wanted and to make sense of the knowledge she was gaining) this time I let Monique know what was to happen regarding her care but I had no meaningful response or feedback.  It was a decision that I had to ultimately make on my own - but on her behalf.

 I was given a list of facilities in the greater Christchurch area that may be suitable and had some experience with HD patients - I started to make visits and shorten my list.  It was a task that I do not hold fond memories of.

 Monique finally ended up in full-time hospital care over two years ago at the age of 33.  She is at St John of God which is the same hospital that her mother spent the last 20 years of her life.

 It is a new hospital being only 3 years old.  The modern building is great with individual rooms, great gardens, good natural lighting and plenty of private family areas if required.

 The ward that Monique is on has predominantly young patients in it - with two others with HD.  The nursing staff are great – very compassionate and understanding.

 Monique has a very busy and organised week - with a craft group 3 mornings a week.  This is at an off site facility.  Craft is and was Monique’s great hobby - her handywork is starting to fill the ward walls.  Every Friday Mackenzie spends time with Monique - where an independent nurse takes the girls shopping, visiting friends, to the beach or to the dental nurse etc.  These “normal mum” activities gives Monique a sense of participation in Mackenzie’s upbringing.  The other day is a Physiotherapy day - which Monique treats like a social outing (I am pleased to say that the “physio” from St John of God’s is here at the Conference)

 The best news is that Monique has settled or stabilised beyond my wildest expectations - I believe the stability, routine and caring environment of the hospital is the reason.  She has a shower at the same time every day, her meals are there the same time every day.  She has structure in her day.

 As a family - Mackenzie and I get to spend quality time with Monique and know during the rest of the time she is being well cared for.

 As much as I wish Monique could be at home with us I know it would be unfair on her and probably destructive on the rest of us.  I do have Monique home periodically and she is always happy to return to her home where she has friends, a gardener and someone who delivers coffee at the same time twice every day.

 Since I wrote this speech things have changed again – The last home visit by Monique started well but in the middle of the night Monique woke very disorientated and distressed – thinking that I had broken both her arms.  It turned out to be a long night and difficult to return Monique to hospital.  When I finally did manage to get Mackenzie out of the situation and to the safety of her Grandparents - Monique who was still in her pyjamas finally did leave the house but she didn’t turn left at the front door and into the car but wandered straight off down the middle of the street attempting to wave down a bus so she could get to a doctor to fix her arms.  I had difficulty getting her in the car so I walked with her and coaxed her with a cigarette to calm her and distract her and managed to get her in the vehicle.

 Monique did not settle at the hospital and the staff couldn’t calm Monique during the day and in the end had to sedate her which while a rare and extreme measure did help settle her.

 The disruption of her daily routine and environment was enough to unsettle Monique – I now think it is unfair to remove her from this environment and too destructive and hard on Mackenzie and myself.  Maybe in the future we will reconsider the home stays if it is appropriate for Monique

 I realise that it is Monique’s delusional or psychotic state that has made it such an easy transition into the hospital and a reason for her being so accepting of her environment.  I know that not in all cases the full time care is so successful.  But although it was a tough and difficult decision not having Monique at home I know in our case it was best for us all

 She does continue to deteriorate – she has more and more falls and choking episodes but as her nursing needs change I know that it will be discussed and altered to suit what is best for Monique.

 Conclusion

My last speech ended with me saying what I thought may happen and that didn’t last 12 months.  I wanted to keep Monique at home and the family together.  I know deep down I made the right decision for us all.

 My goal now is to keep enjoying Monique’s company by doing as many fun things as a family while Monique is still mobile and able.  The quality time we now get to have I believe is far better than what may have been if Monique was still at home.

 I do look back and think how things may have been different.   I wonder if Monique was more susceptible to psychosis because of her positive test result - and whether the continued stress she was under for 3-4 years with the predictive and foetal testing, the death of her Mother and then the news from the doctor about the onset of symptoms caused a stress related psychosis.  I don’t think it was a coincidence that she had her psychosis within 10 days of that visit to the doctor.  It is something I have never raised with a medical professional and wouldn’t expect I would get a particularly meaningful answer.  The past can’t be changed but I can’t stress how taking time out and looking after oneself is paramount – but it is difficult when you are in the thick of it.

 That’s all I have to say.  I know that I will probably look back on this speech in 3 years time and things will have changed and my views may have altered but I don’t think, or I hope, it will not be as radical as the last 3 years

 Thanks for listening.

 Mark Chapple