Yellow Azalea

Tuesday 5 May – Day 41

Another day flying solo without any caregivers. These are the days where I go to the pantry to look for comfort. Blah. Enough said. Still no signs of the DVD player for Mitch from The Warehouse, Phil’s beard trimmer and I hoped my scrapbooking goodies might arrive today. But no little packages of joy showed up.

Wednesday 6 May – Day 42

No carer today as Georgia had a PPE training day for her regular job with the Orthodontist. I had booked in Mitchell’s annual needs assessment with Taikura Trust for 2 pm, and it was going to be combined with the Adult NASC assessment but unfortunately we could not all make the same time. But we still went ahead with their one.

Needs assessments (NA) are far from my favourite thing. Even though I have become accustomed to them out of necessity to get supports for Mitchell, they are something I dread. It usually ends in tears and I expect to feel drained by the end of it. I have learnt that it is necessary to describe in detail all the ‘bad’ parts of our family life, and the most challenging parts of caring for Mitchell. In an NA there is no focusing on the positives, simply outlining the negatives and what Mitchell ‘can’t’ do compared to a ‘normal’ person his age. It’s no wonder you feel crap at the end of it – there is such a focus on the negatives.

The purpose of the NA is to estimate how much time in hours of financial support the government will provide to help him (and our family) live as close to a normal life as possible. The reason we have two needs assessments is that one is for his ‘disability’ needs and the other is for his ‘health’ needs. The only reason they are separate is because they are different government budgets. Many of the questions we answer are very similar for both government agencies and this is why we hoped to have a multi-disciplinary approach this year. It was not to be, so I am still up for the health needs assessment. Another conversation with a person who I don’t know, that will ask personal and intimate questions about our family. I can only say – I do not like the process at all.

If you are unfamiliar with the ‘system’ in place, you could easily be confused by it. In New Zealand there are multiple programmes of disability, health and accident supports in place and the criteria for each are not created equal. I have always believed the causes of the disabilities someone experiences should not affect the outcome of the treatment they receive, but there is a long way to go to iron out all the kinks in social policy that have been put in place through the years. While there are a multitude of disability organisations advocating for changes to assessment and the allocation and levels of funding, we are a long way from reaching a gold standard – for want of a better term.

In our personal experience we have been exposed to a multitude of needs assessors and different funding programmes. We have advocated hard for our family and for the last few years have received funding that can support our needs – the gap that is still there is in the ability to find and train and retain employees that fit with Mitchell and our family. I now have met our Taikura Trust needs assessor multiple times through multi disciplinary and High and Complex meetings, so it has become more personal, but there are still no warm fuzzies to these conversations. Throughout these agencies by far the best experiences I had was with the Family Options NASC, which we worked with from hospital discharge until Mitchell turned 16 years old. The reason this agency was far superior to other forms of support, was quite simply to down to the two people we worked with – I trusted that they listened and that they would do everything in their power to make our challenges as good as they could. As with many other areas in life – it’s all about relationships.

In the end, today was one of the ‘better’ assessments, because our assessor knows our backstory, we did not have to start from scratch. However, I expect the health one will be a different story, as Mitchell is moving to adult criteria, since turning 16 years old. Our current package expires in the middle of June, so hopefully this will be processed quickly and things will be in place for the next year.

Otherwise, not a lot to report today. the usual, out for a walk, feeding and changing Mitch, groundhog day 42.

Really, really need to buy new walking/running shoes.

Thursday 7 May – Day 43

I seem to have completely stopped focusing on ‘how many’ are affected by Corona Virus and have stopped looking at the worldometers multiple times a day (as I was at the beginning). But, I’m still astounded at how the USA are managing their pandemic, and surprised at some of crazy comments coming from their governance. It makes me grateful that New Zealand took a strict approach, but I am also really concerned about all the long term impacts this is going to make on our economic recovery AND how it will affect the health budgets in years to come. The spending by our government is generous, but scary when it is usually so hard to get adequate support in usual circumstances. It’s not a bottomless pit and it scares me. I just have to hope that there is enough to go around for ongoing healthcare post coronavirus.

Friday 8 May – Day 44

I tracked my points for weight watchers this week and kept them in a journal that I had started back in February for this purpose. I’m not feeling the love for this way of journaling, but I don’t know if that is just because I did not have a great week. It’s always a tough time to try and eat healthy, and with so many other intrusions on the ability to give myself self-care I’m just struggling with this on top. Long term, of course I realise it will be a benefit, and I am trying to ‘fast forward’ to being able to enjoy being fitter and leaner.

For May OLW, RECORD looks like:

Played golf solo today and shot 54 for 9 holes. It doesn’t feel the same not being able to hit in the actual hole and not so much fun on my own. But it was fresh air and a walk, and some time away from the house as I seem to be spiraling downward I need to do something.

Sherlie (Friday night support worker) took tonight off as annual leave. That meant that Phil and I were once again on the night shift. While Mitchell has been generally in a positive space, tonight he decided to turn it on for us. I was heading to bed at 8.00 pm, so that I could get up at 2 am to swap with Phil, but by 9 pm, I still wasn’t asleep as I could hear Mitchell’s shouting sounds. Holly had done Mitchell’s fortisip tonight (we are teaching her some of his cares) and while that was happening, he had started to show signs of ‘monkeying’. I don’t know how else to describe his nuances, but when he shows signs of a meltdown it usually involves quite subtle changes in his demeanour that you need to be in sync with to realise what is coming. This involves little signs like pulling his NG out of his nose while you are giving him his milk, or trying to grab the syringe. Within about 20 minutes of my going to bed he had leapt from a gentle boy to a tormented young man. It’s hard to watch as he transforms from gentle to aggressive. At times I can’t deal with it, and other times I can see that it’s not him but because the wiring is different inside his brain. Tonight I was able to settle Mitchell (it is often Phil taking over from me) and he went to sleep by 9.30 pm, which was a relief.

We have so much love for this guy, but the challenges are immense. In lockdown, with less support workers coming in, we are at times grateful to have space in the house for our family. We have been able to sit down in the lounge without a support worker sitting outside Mitchell’s door (in the lounge) and talk without an extra pair of non-family ears listening. It’s liberating. But the downside is the relentless need to be hypervigilant, all the time. It is exhausting,

Saturday 9 May – Day 45

Today started with a sleep. I ended getting up at 3 am, as I had gone to bed later than planned, so headed back to bed just after 7 am, when Georgia arrived. Slept until late morning, but not a great quality sleep and I can feel that these odd hours are starting to get to me and I can feel that I am starting to get nervous about next week. Monday, the government are announcing whether we will go to Level 2 and if we do it means I will go back to work. I’m happy about that but our carer situation is so dire, that I don’t know how I’m going to make it happen.

Took myself out for a walk at about 5.30 pm to try to lift my spirits – and felt a little bit better for it. Lucky to live beside a large park, so there is plenty of green area around. During lockdown there are many more people out walking and quite a lot with young families. It will be a shame to see this drop off again, once everyone is back commuting and working again.

Finished reading Grown Ups by Marian Keyes (her latest out). I don’t know if I have moved on, or if this one was just not as good as some of the earlier ones. It was light and entertaining, but I didn’t enjoy the characters Cara or Liam very much. Maybe it was just my mood, but it didn’t make me laugh out loud, which her books normally do. Worth a read, but not a page turner that got polished off in a day.

And tomorrow is Mothers Day. And I won’t be able to see my Mum, so feeling a bit flat all round.

Take care and wash your hands.

Cherie x