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????
7 comments:
Helena, there were people that came around to see my Mum and then the rest followed although it still took too long. There should be a mental health team locally but if not call your local centre for dementia/alzheimers and ask their advice. I think someone should be assessing your Mum in the home environment now and it doesn't seem to be happening. It is not just the tablets, it is every day being able to cope with stuff..
I would start here http://alzheimers.org.uk/site/scripts/documents.php?categoryID=200121
If I can help in anyway please email me I am chrissymw45@yahoo.co.uk
THanks Chrissy,
I'm on the forum at that site. I have had some answers this evening that are v worrying as they are saying there isn't a treament for what mum's got, only for Altzeimer's, and they are surprised that the neurologist even suggested it!
I have been in touch with Age Concern and they are sending someone in a couple of weeks to go over attendance allowance, but though I asked them about social stuff, they didn't come up with anything, and I've had nothing re social care or help from the GP. It's awful how we have to do all the running about!
Helena, I would suggest that you let everyone know the urgent nature of the situation - the neurologist, the GP etc. - and impress upon them the need to get this sorted ASAP. Here we have CAT (Crisis Assessment & Treatment)teams in hospitals for pressing medical situations - I don't know if you have them? I'll ask Mum if she has any ideas too.
Perhaps through the GP or calling them yourself, try your local mental health team. They may have been notified already via the specialist but they are severely under resourced.
I would be careful about forum advice, the neurologist will be basing her advice on medical history ~ people talking about actual medication in a forum don't have access to those facts :/
You need some advice by someone that has access to medical records and if possible a home assessment. The reason I suggested local dementia/alzheimers is because you could phone them locally to see who deals with what!
Chrissy has given you good advice the only thing I can add is if you are getting nowhere with the local health services you could take it to your MP.
Helena, I'm sorry I can't give you any advice - the situation is different in Germany.
I am a member of an online support group of relatives of people with dementia, that helps me a lot; they give support and advice. Maybe you find something like this in GB?
Talking of pills to stop the syndromes - I have read a lot about them and, after this and one try that caused permanent vomiting and MORE confusion, I have decided not to give my mum any pills against her dementia.
I don't like to take away your hope, but there is no really effective and harmless medicine that makes it better. Some do at some persons - for a short time of maybe 6 month, then they do not work any more. And they have massive side effects. They are said to be only used under control of a neurologist in a hospital. They stop it for a while - but it will go on, with or without medicine.
Other medicines are still in a process of being studied.
Of course there are medicines that help our confused loved ones and us if necessary - to stay a bit calmer when there are very aggressive, or to ease their mood if they are very depressive. I don't use them until now; my mum is at the moment more like a child, confused but friendly (and keen to catch any ice cream she could *lol*).
Nevertheless, it is a scandal you and your mum should wait until next summer!!!!!
I would like to send you a bit strength. It sounds maybe hard but - I feel it caring about my mum since 2 years and seeing how it gets worth - you will become stronger than you ever thought you will be.
But try to find any help you can get (family, friends, care service etc.)
*hugs*
Bodecea
Hoping that things are having a good turn soon...
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