Paul in NZ catch up

[Paul in NZ]

Hi all.

Just a catch up. We are still alive and kicking but Vicki is now rather disabled and really only understands half of what she hears.

Thankfully she's still fit and active and gets around. Her Frontotemporal Dementia (semantic) is really starting to bite hard. However its been over 5 years now and she was given 3 to 5 years to live so we are doing something right. Infact she's become a real outlier in the stats.

Of course this success comes as a huge financial disaster as I cant work as I need to care for her 24/7 now. She cant drive and god forbid she ever tried to cook. Eventually the house will be too much and we will need to downsize.

Naturally, the system is little to no help so we constantly have a battle on our hands. By way of comparison - you may recall I had to take custody of our autistic grandson. I get allocated a certain number of hours for respite care for Vicki (after a fight). BUT the spend is capped at $74 (per day) and a professional carer is about $56 an hour and you have to find the carer. Ungh – anyway I have a guy I pay who comes and gardens with Vicki a ½ day a week. Costs $140 so it really costs me $100 as I get about $40 back…

To claim the $$ (I have to pay him first) I fill in a form. To get the form I have to call a lady in Dunedin (wait for an hour or 2) who prints it out on her computer and posts it to me…. Not emails it – posts it – takes around 10 days to get here. Once its filled in after (say) 8 visits I post it back (yes in the mail) to Dunedin and it takes around 10 days to get there and then 10 working days to process… Its insane… Its takes over a month.

I get respite hours for the grandson – its all online through Manawanui, done fortnightly and takes 5 mins – I attach the invoices, I get the money in 2 working days.. Anything he needs time wise is 100% funded (again you need to find your own carer so I use a personal trainer) and hes learnt to catch the bus to the gym etc and excels at discus and shotput (hes built like a yeti)

The funding comes from the same place Why they cant all use the online model for both is beyond me… It would save millions....

We looked at retirement villages. $950,000 for a villa and no guarantee Vicki will end up in care in the same facility Im in. PLUS you need to be 70... I doubt she will still be viable in 4 years time.

We keep having wee trips which I record still (just some - Im selective and dont want to embarrass or humiliate her). Do me a favour and subscribe LOL and maybe my grandaughter wont give me such a hard time.

I converted Vickis bike to E power. Bloody good fun as unrestricted...

https://www.youtube.com/watch?v=ntaVSGlY38s

[onearmedbandit]

Thanks for the update Paul, ridiculous the struggle you have to go through. I've subscribed to your channel and will watch through the videos. You're a champion and a true inspiration. BTW, I love getting Vicki's comments on my facebook posts.

[Paul in NZ]

Thanks for the update Paul, ridiculous the struggle you have to go through. I've subscribed to your channel and will watch through the videos. You're a champion and a true inspiration. BTW, I love getting Vicki's comments on my facebook posts.

Yeah sorry about those... Shes calming down a bit now but that phone was glued to her hand for a while and some were a bit inappropriate ;-(

[onearmedbandit]

Yeah sorry about those... Shes calming down a bit now but that phone was glued to her hand for a while and some were a bit inappropriate ;-(

No need to apologise at all, none of her posts were inappropriate (although sometimes a little confusing), I fully understood the situation.

[Laava]

Kia kaha Paul kudos to you and love to Your wife. I also have subscribed…cheers, Al

[pete376403]

Subscribed.

[BMWST?]

Hi all.

you are an absolute legend Paul. I dont know you and cant comprehend what it is you must be going through and yet you are here and telling us about your journey. I dont really know what to say

[rastuscat]

Just to add, its a journey a lot of us have made. Share away.

[HenryDorsetCase]

This is awful news. My condolences. Fuck cancer.

[Paul in NZ]

Just to add, its a journey a lot of us have made. Share away.

I'm very sorry you have been through this.

[Paul in NZ]

This is awful news. My condolences. Fuck cancer.

Well - awful yes but the reality with Dementia is shes never going to get better - it just gets worse. While its grim its important to remember we have good days still - or maybe just a good afternoon. Its important to focus on the good times and not get swamped by the bad. Having said this - Ive found you really need to front foot everything because no one else is in your corner...

[caseye]

Head up mate, nothing for it, but to see it through, Vic looks to be in fine fettle and enjoying her rides particularly, I heard a couple of Paul's! in there too.
Still here, still riding, back to the Mainland in December for a mates 50th, shit but he's a young un, rides with me, can't be all that good, but a mate simply is there for us, just as you are for Vicky.
Love your strength and that band of stainless steel is evident to all who follow you both through lifes journeys.
Respect mate, much respect.