Nice People Thread Number 10 -the official residence of Nice People

tomterm8

Is there any chance of going private?

Or to another GP?

Frankly, given the scenario it seems like your fears are justified, in which case any delay in treatment is worrying since there are some things that can be done to slow down the condition.

I think the NHS is bad at dealing with Alzheimers from what I have heard, at least until it is a crippling condition and too late to really do anything.

PasturesNew

lostinrates wrote: »

Thanks pastures, I will.


Neurologist thinks I have 'painless' migraines all the time but I don't know on what basis. .

I said drink lots of water because [a] it's easy it's free and [c] dehydration of the head/brain is the cause of most people's headaches.... so I figured it could be a trigger for your migraines - and drinking water doesn't hurt either.

PasturesNew

silvercar wrote: »

I'm not grumpy, I look on it as a challenge, finding people a path out of the !!!!.

I can however understand lj saying enough is enough - some people just don't want to be helped.

For me the issue is more complex. I always say "it's never one thing" - and many people are over-whelmed and can't see the wood for the trees.

I find, alone, too many things mean I have no idea where to start, nobody sitting and guiding me. To send me off with a vague 'help instruction' just adds more levels of confusion.

e.g. buying a phone. Being given 4-5 links and told "read the reviews" doesn't help if it's all an alien language/world to me.

So, sometimes, it's not that people aren't taking the help - they're not finding the form of help helpful, but more confusing.

tomterm8

Migraines are weird old things. In my case, they are highly triggered by drinking tea (who'd have thought it, that was my parents favorite drink for me when I was a kid. D'oh! ), and less triggered by various food items like chocolate or stress, or strong smells, or bad sleep patterns or just about by living.

PasturesNew wrote: »

For me the issue is more complex. I always say "it's never one thing" - and many people are over-whelmed and can't see the wood for the trees.
.

Edit: Often, there are knowledge gaps or skills gaps. Sometimes you don't even know what you need to know in order to do what you want. Or, sometimes due to various conditions you simply can't take the advice.

For example: If you are unemployed the standard advice is to send of CV's etc, but what if you can't write? You can't even do the basic things people advise you to get a job.

lostinrates

tomterm8 wrote: »

Is there any chance of going private?

Or to another GP?

Frankly, given the scenario it seems like your fears are justified, in which case any delay in treatment is worrying since there are some things that can be done to slow down the condition.

I think the NHS is bad at dealing with Alzheimers from what I have heard, at least until it is a crippling condition and too late to really do anything.

Yes. Parent has afriend who is a private GP who sometimes helps us out. The issue is will friend recognise it! I don't know he will:( I think its the kind of thing that's easier to see if you live with.

And tbh, when you complain. You seem petty.

E.g. This morning I got up closed the dog door and apologised to the dogs ( parent was up at four am. ) turned off the tap again( I have to get the tank emptied because this has been done four nights this week and our bio disc cannot cope with the water volume plus the rain). And put the ^%%#|~$^ toaster away. ( that's absent mindedness or laziness but it !!!!es me off so much I'd throw the %}%~^<^$ away if it didn't mean parent would have to grill toast and leave grill on.



Honestly.....I think it might be why I had a migraine :rotfl: I feel better now, so will grub around a bit and then go to b and q.


I don't even know whether to tell parent each day what they have done , ( they remember this sort of 'admonishment, but not not to do it again.. i'm not telling off, just trying. Say, you did this, can you try and remember not too.....) or just to not bother.

bugslet

Just from my experience with Mr Bugs when he was leaving taps on, not locking doors, in essence not being himself, I wrote everything down and pestered the GP. Fortunately I had a very good GP who insisted I see him to talk about Mr Bugs and keep an eye on me. However, it was still a painfully slow experience setting the wheels in motion to get a diagnosis. As tomterm said, the NHS is not good at dealing with it until it becomes a major problem or an event, such as Mr Bugs falling, takes over and forces the issue.

Just keep going back and back, it will impact your health if it is Alzheimers that the parent has and as it progresses.

lostinrates

PasturesNew wrote: »

You need to get a dementia test. We tried to get this for mum, but ran out of time as it's really difficult.

From memory I think we had to ask social services to get an assessment, which is done by the local psychiatric nurse. We got this far (finding out, making the phone call), then the nurse phoned and made an appointment (a few weeks more waiting) .... and then it all kicked off and mum was in Hospital, thus missing that date. The Hospital were asking if she'd been tested, but never offered to get the test done. Then it was off to the care home and still no test has ever been done. Home is for dementia, so door has a keycode on it so she can't get out ..... so she's in the right place at least, although the one she "escaped" from was also a dementia place with a keycode.... but she escaped from the garden which had no security!

Look into getting the test done. It's a "well known problem" that people aren't getting tested/diagnosed. Until you have a diagnosis you can't be hooked into any help available. I've no idea what help might be available, but you can't get any potential help until you've got that diagnosis.

In the meantime, you're going to have to work out how you can keep your RP and dogs and house safe; find ways to get round the issues..... which will be difficult as what they do will keep changing.

Also, your changes might not fit your planned "perfect house". e.g. you can replace taps with those ones in public loos where you press them and they turn off after awhile.

For the doors, make them so they lock when you shut them - although you then need to work out how to not become locked out yourself (e.g. fitting a keycode lock to those doors.

All a faff.... having parents isn't easy is it!

I don't know if RP would fail a dementia test. RP would know what year it was, can do a cross word, would know who prime minister is, and current events. Watches/ listens to news on a loop all day. But cannot remember any personal stuff.

Ha always lived in the past, by nature. But increasingly so. Is off on holiday in a couple of weeks. Maybe I'm just noticing it all more because I'm less out of it? Or because parent is here less and so when here I'm noticing more? I dunno.

But there are definite things I'm worried about.

Generali

LIR. Talk to your local Alzheimer's Association: they're amazing as a rule and really helped my mum through the process with my Dad.

If that's no good, PM me and I'll put you in touch with her. Since Dad died she's tried to help other people through the journey of Alzheimer's.

IIRC, one really important thing is to get this down as a medical rather than a social problem if possible. That way the NHS will provide resources and they're rather richer than the local council.

Alzheimer's is not a fun disease at all. You have my very great sympathy.

lostinrates

bugslet wrote: »

Just from my experience with Mr Bugs when he was leaving taps on, not locking doors, in essence not being himself, I wrote everything down and pestered the GP. Fortunately I had a very good GP who insisted I see him to talk about Mr Bugs and keep an eye on me. However, it was still a painfully slow experience setting the wheels in motion to get a diagnosis. As tomterm said, the NHS is not good at dealing with it until it becomes a major problem or an event, such as Mr Bugs falling, takes over and forces the issue.

Just keep going back and back, it will impact your health if it is Alzheimers that the parent has and as it progresses.

Ah.....so this is how it starts?

Did you find the same, that mr bugs was able to drive and be ok 'in the Monet with 'skilled tasks'?

I'm sorry bugslet, this is probably all close to the bone.

PasturesNew

lostinrates wrote: »

I don't even know whether to tell parent each day what they have done

I think you should keep a diary..... it's easy to forget the small stuff and you might need your diary of evidence at some future point, to help you make decisions about what modifications need to be made, or to have discussions with relevant agencies etc.

Having it in a diary - and instances counted - can mean you can summarise events in one sentence, rather than being asked in conversation how often things occur and you blindly racking your brain for some immediate answers, that are hard to communicate with impact.