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Who is your #1 ?

Kia ora and greetings from Aotearoa New Zealand.

Much has changed since I last wrote and I am not hoping to capture it all at once. The first thing for me is a name change. I am in the process of legally changing my name from Darren to Heemi. This is Te Reo Māori (language of the indiginious people of New Zealand ) for James and is the second name my parents game me at birth. (Darren

James) I am now changing it to Heemi Darren Humphries. This is a change because often significant changes in life are marked by name changes for example birth, marriage etc. Heemi (James) has it's origins in the name Jacob - which means cunning, innovative, creative thinks out side of the box. I am also a Gemini and recently turned 55 and so time for Darren to get out behind the wheel and sit in the passenger seat while Heemi takes the wheel and takes the lead. This has been the crossing the a threshold and so far Darren seems to be coping ok with the ride.

Perhaps the title of this entry is confusing for some of those reading it. Some might hesitantly say themselves and others will say the person you love/spouse or partner who is living with Huntingtons Disease. I can confirm through experience that for me and my relationship with my wife who is living with/actively dying with HD is that I need to be #1. My physical, spiritual and emotional wellbeing and health MUST be my #1 priority lest I am the one who ends up having treatment for a nervous breakdown.

There comes a point for some including me where in your best interests that you need to make these what feel like tough decisions. For me after 24 years of knowing and journeying with my wife I came to the realisation that I could not longer do it on my own. Sure there were some supports but the routine at home required to keep things sane and functional had hit a wall. Add COVID to the mix and I was waiting for a powder keg to go off. In May this was my experience and Julie was moved into residential respite care. Did I feel bad that I could no longer

care for my wife due to the progression of HD ? Sure but if I was to survive this journey, I realised that I needed to be #1 and not her. I can't care for her if I was not ok and I admit there are times and have been for many years when I have not been, I have sucked up the challenges and the behaviours and accommodated the abuse over simple things like which laundry should go in the dryer. I reached the point where I simply didn't want the relationship to be carer and caregiver I wanted to simply be her husband for whatever time Julie lives. I had been sucked up into the vortex of HD. No matter how I resisted, or attempted to daily replenish, the little balance and energy I fought to gain and maintain, was veraciously consumed by work, HD, care for Julie and my daughter and trying to proactively stay ahead of the beast. I fought for time for me and to fiercely protect Heemi, I was exhausted, worn out, chewed up and spat out. When you are are always in deficit life and the future can be overwhelming and fuck it's a scary place to be. Funny how I thought my friends of many years would come and support me and love me and hold me while I cried and I even asked for this from people and I waiting and I cried and no one came, no one called, no one visited, and only on a few occasions did people enquire. When they did the first question was - "how's Julie doing ? or how's Francesca coping?" to which I wanted to respond - well you have their phone numbers why don't you call and ask them. I am profoundly grateful for some people I have become close to online who love me and care for me, but in person no one has showed up for me.

So what have I done ?

  • made myself #1 - I can't care for Julie unless I ensure I am cared for

  • circled my wagons - let go of relationships and activities that consume my time and energy and give nothing in return

  • invested in things and activities that give me life without feeling guilty,

  • daily walks, eating well, loosing weight, meditation and spiritual selfcare, being vulnerable and sharing with a few and only a few what is going on no holds barred.

  • reduced my communication window and let my phone go to voicemail and deal with things when I feel life I can

  • went to see my Doctor and hatched a plan of self care including some emergency meds if needed.

  • Massage, floating soaking in hot pools regularly, getting grounded

What these things have enabled me to do is to see clearly and pluck up the courage to say I can no longer be a caregiver for Julie in a way I once was and that change needed to happen. You can guess the response to this was joyfilled and accepting can't you ? that was not the case right and I experienced a tsunami of emotion and opposition. But this was not about Julie. It was about me for a change. OTHERS didn't understand and many fled, someone even suggested I was having a manic episode and was wondering if I was sure I didn't wasn't bipolar and needed medication. I have stood my ground and the best decision for me and for Julie and our family was for Julie to not come and live at home but to live in a residential care facility where she has access to 24/7 hospital level care. It was a transition in relationship. I have quality time with Julie now and we do things together and she has even stayed over, but this is best care for her and best care for me, it's quality time. I no longer have to constantly bail water from the sinking passenger liner before if become submerged and we are both sucked deep below the surface.

I have learned to not be afraid to be honest and so speak up for myself and what I need as a person. On reflection I had become lost as a person a casualty in the wake of HD which is no respecter of persons. For the first time in 24 yearsI am learning more about what is to life fully and love fiercely as a human being and not just in the shadows.

So where ever you are at in your Journey with HD and someone you love who is living with or actively dying with HD. Do not be afraid ! speak up and let your voice be heard and do so sooner rather than later. The best was to love someone who is living with HD is to love and care for yourself first.

Sending love and blessings and peace to all those who read this.




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