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.

[Paul in NZ]

So just an update...

Well we had the Psychiatrist here recently with the Older Peoples Mental health team.

Thankfully we are at long last getting help.

We are going to trial some different medication to try and damp down some of Vickis worst behaviors but sadly not a lot can be done re incontinence. Having said that the free products arrived today (finally). These are proper incontinence products and not the small leak products we get from the supermarket. Its a game changer as suddenly we can drive further and go to a cafe without fear let alone go through the night.

Having said that - if you ever find yourself in this position look into brollypads. Suddenly Im not cleaning the lounge suite or car 3 times a day!

The team were careful to point out we are at the point of diminishing returns. As Vickis FTD goes on there's less healthy receptors in the brain for the drugs to work on. And of course, any drug has side effects.

They also mentioned that if Vicki was in care there would be a whole team of people doing what Im doing in shifts. (she wet herself 3x last night)

Anyway – I'm going to trial some new drugs to help with outbursts and sleeping and see how it goes.

Hopefully that will get us through the winter but the fact is that this is really the last throw of the dice of what I can now do for Vicki alone. I'm not sure what's going to happen next, but I know I couldn’t have done more for her and Im reasonably proud of that.

Its not all gloom and doom - we do still have good days! BUT the end for my solo home care is coming to an end. 8 years since we noticed symptoms...

[F5 Dave]

Wow, it is really a cruel joke life can play on us if we live too long, and by that I mean in the 1800s I'd be well dead by now. Life expectancy has increased hugely. But the brain doesn't always play the long game.
Good for you sticking with it. Hopefully there is respite in symptoms.

[jellywrestler]

Hopefully that will get us through the winter but the fact is that this is really the last throw of the dice of what I can now do for Vicki alone. I'm not sure what's going to happen next, but I know I couldn’t have done more for her and Im reasonably proud of that.

You have endured what would break many people, aside from the physical demands this has brought on you watching the decline of any person farless one you cared for so much for so many years, and still do, is nothing but heartbreaking. Reasonably doesn't really seem to be the right word to me, but it's your writing.
Take care and enjoy the sunshine while it's there