Here I am wondering how I ca ge the ol Africa Twins motor out and make her a trail bike, that's amazing, you buggers are crazy, all that an No Mota!
Looks like fun, ride on.
Here I am wondering how I ca ge the ol Africa Twins motor out and make her a trail bike, that's amazing, you buggers are crazy, all that an No Mota!
Looks like fun, ride on.
Every day above ground is a good day!:
Hi Kiwibikers – just a quick update on life… Which frankly is complicated…
Vicki is still going – its getting hard now as she is gradually loosing her words. Of course there is zero support because we are too young, she still work/driving and apparently you cant self refer (you totally can) and yet even when you get the GP to refer they just pull another excuse out of their arses. If you don’t fit into their box you are screwed… So it will be yet another argument… I have found out we have several specialists in early onset rare dementias and my next mission is to find out why the litteral fuck where we not referred to these experts. The answer was ‘Oh you didn’t ask for a referral.” How the heck am I supposed to ask for a referral if I don’t know the service exists??
I have another table thumping appointment due in 2 weeks – its rather draining.
So yeah – its not great. Vicki bless her heart is still a sweetie but this disease is a stone cold killer and its hard watching her slipping away and this other person wandering around in her body. Cooking is largely beyond her now because she can’t draw the connections between the foods/uses and utensils etc and it could be dangerous. However, she loves to help me cook which is – erm – interesting. She also helped paint the bathroom which was more interesting as she paints with a great deal of enthusiasm and not a lot of skill. After she stepped into the paint tray the second time, I was thinking these disposable overalls were a great investment.
Karns thriving… I have signed him up to the local track and field club where he gets throws coaching. He even qualified for the regional secondary schools’ games and would have won the Discus but got a bit over excited and ran out the front of the circle (sigh).
Me? My health is declining from the stress and constant high energy output needed to keep a house with 2 neurologically challenged individuals on track. The practice nurse was a little concerned about my mental health so referred me to a counsellor – They called to make an appointment; the next free slot was 8 weeks away. The laugh did me good, so I declined – love him or loathe him Mike King is 100% right. The health systems a joke and I’d love to know where the money went… However I now have a plan of attack going forwards so with a little luck we might turn a corner soon (and hopefully not crash into another ditch)
The Triumph sits un loved or at least unused… Oh well….
Ah shit that's a hard read Paul. Has it been 2 years since you first shared the news of Vicki's health. I lost my Dad in 2017 to dementia and as you say it's incredibly hard to watch the person you love, literally disappear a bit every day from their body. The instinct is to say, best wishes etc but we all know there is no happy ending with dementia.
Try and look after yourself as best you can Paul and cling to the happy memories.
Mark
Happiness is a means of travel, not a destination
Thanks Mark -
Sorry to hear about your dad - its not fun at all.
We are 3 years on the journey since Dx and honestly Vicki is very heathy neck down so we are still having good days. My frustration is that there would be more of them if we got just a tiny bit of help. My frustration is more the health system than Vicki and as you know she is a delightful human being ( most of the time.... )
Cheers
That was hard to read.
I wish you all the best - and try to keep laughing at the absurdities of our health system. Don't let it get you down too much.
The best way to forget all your troubles is to wear tight underpants.
You are both champions, hard to read? yes. But like all of the others I read every word.
We love you guys and given a chance to do something practical we'd jump at it.
Take care out there and make the barstards pay! next week.
Lost a lot of mana for Mike King awhile back, got most of it back when he handed back that meaningless piece of tin and told the truth.
Hang in there mates.
Every day above ground is a good day!:
Oh one other thing... I have been learning a LOT on this journey
If anyone finds themselves in a similar situation please reach out because even if I cant help I can certainly empathize
Paul, sorry to hear how things have progressed. Love to you both.
Cheers
Merv
Hi Paul, I don't know you but that was a hard read. You're obviously a hard working absolute good bastard.
Keep it up mate.
God bless mate .It's so fucked up that resources are put into the wrong areas. This government are a pack of cunts like never seen before. .Let's fund the gangs for drug problems that the gangs import in the first place! We are now heading towards being a communist state. I hope you and the wife get the help you need .
It doesn’t work that way really and things have been in decline for decades. Its not political and if it was a communist system would provide everything - this is more a crazy capitalist system where you are thrown to the wolves and pay for everything yourself.. The Govt (regardless of political party) sets policy via the Ministry of Health and the DHB’s and NGO’s deliver the services. Policy wise we are covered (we are not the first to be in this boat) it’s the non medical admin team that was keeping us out of the system… Effectively administrators making clinical decisions! The funds are there but the DHB’s are the ones that prioritise the system…
By way of an update…
We finally got our assessment. The guy couldn’t have been nicer and apologized for the run around which was interesting. I basically had threatened them with the health and Disability Commission and the MoH both of whom I had been in contact with and both told me that a refusal to do an assessment on someone with a Dx was tantamount to neglect…
Thus far we have not heard back (week and a half) and even if we are successful its simply access to a budget and we will need to find the career (sigh). The main benefit to us is that we are now in the system…
Vicki keeps on being amazing. Shes happy and cheerful most of the time but of course she has me to run around after her.
Her 64th birthday ride is here
https://www.youtube.com/watch?v=wgU5fxxgki0&t=514s
Well fuck
These people have a special talent for suffering
Yes - we won the right to 2 days a week support at - $72 a day
Careers are like $50 an hour plus travel
LOL - yeah we will muck on ourselves thanks. The system knows this - its just another way of keeping the costs down
Can you Save it up for some respite for yourself? Has always been out of step with pay scales.
Don't you look at my accountant.
He's the only one I've got.
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