Paul in NZ
31st October 2023, 12:41
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
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