Juggling life through a bi-polar lens. Sometimes up, sometimes down. Mostly trying to tread water in the middle. Creating a likeness to a normal life. Whatever "normal" is...

Monday, 16 August 2010

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.....

5 comments:

Feronia said...

My Mum is going to ask around at her work (an aged care facility) to see if she can find anything out for you, Helena. Thinking of you :)

Angel and Kirby said...

It sounds like you have a plan. We hope you get answers.

Chrissy said...

Hi Helena, some interesting information you have amassed there. I am thinking that they quite often call Alzheimer's dementia because it sounds less scary! Not in my eyes but in some. You definately need some clarification. Interesting information about the tablets. I think they are quite new and it does seem as though some respond to them better than others!
I wish you the best with you plan ;) Take care XX

Julie said...

Well done Helena for getting a plan together. Sounds like a good one! When your Mum has a sad day try and remember her lovely smile on the museum day. We all need a quiet day to really enjoy the good days maybe. xx

Stardust said...

It must be so difficult...am keeping fingers crossed that there'll be effective care for your mom...

I hope you do find reasons to smile while trying to make your mom smile. Bless you.