No progress, but at least my head has stopped spinning...

I'm now a little clearer about things.....

With thanks to your emails, messages of support, & a trawl through the NHS website. Here's the situation:

There are drugs that can help Altzeimer's, but not Vascular Dementia. Mum does not have Altzeimer's. Least, no one has mentioned it. Some doctors do prescribe the drugs for Vasc. Dem. but if they do, it's against NICE guidelines. This is why, if we went private with a clinical psychologist, we wouldn't get NHS help with the cost of any drugs that were prescribed.

BUT, it is very unusual for mum to get Vasc. Dem. at 68. This is usually far too young to get it with no other underlying conditions. It is possible to have Vasc. Dem and Altzeimer's together. So maybe this is a possibility?

As to the efficacy of the drugs I have received conflicting reports, at the one end of the scale saying that they work only for 6 - 8 months (which is also what the neurologist said, actually) to other reports from people who have relatives who've been on them for years, in one case, 8 years.

For our next step, I think I need to write to the neurologist for clarification of the diagnosis, and to stress that if she thinks the drugs could be of use then we really need to get them as soon as possible. Maybe her caseload is so great she cannot keep tabs on what's happening on individual cases, and maybe she doesn't realise that there is a 10 month waiting list for this next step that she's sent mum on? I'll cc. the GP too, and if I don't hear back in 15 days, I'll write to our MP.

Phew.

OK not an interesting or uplifting blog post. Sorry. But thanks all, for helping me sort my head out. If I can just get some of it down as a to-do-list, it helps me cope. It stops me feeling so absolutely helpless.

Mum had a low day today. It's harder when she is down. I just want to make her smile.....

Unbelievable!

Last month they added mum to a waiting list for a clinical psycologist, but wouldn't give an estimate for how long the list was. Well we've managed to find out- 10 months.

10 MONTHS!!!!!

The clinical psycologist's dept. hasn't been in touch in all, oh no(!); we found out via the legal dept. at the hosptial. My brother is a solicitor, and knows someone there. Otherwise we'd still be waiting.

We've already enquired whether they would see someone privately -they won't- ok so at least we know people aren't pushing in- but so now we're not sure WHAT to do. Grab a Yellow Pages and look one up??????

Mum needs to get those pills PDQ, but can't without a clinical psycologist's say so. The neurologist wouldn't give them. In fact, we are meant to see the p.doc, THEN go BACK to the neurologist to get them, which will be after another 6 week wait on top, as appointments always are. At this rate it could be NEXT JULY before mum even STARTS on these drugs- and everything we've heard of them says that they do nothing for memory and cognition that's already lost, but they can stop more being lost. What the hell will be left by then???

I am trying to run fast and the whole system is ground to a halt! What do I do????????

I am going to write to the neurologist... or should I? Chase the GP? What would she be able to do? Oh I have been with mum all day, trying to keep smiling and up up up, but all the time I've been spitting feathers on the inside.......

....those of you who've been telling me of their own experiences, any ideas????