Red - we crossed posted, I think - I've only just seen your comments! Thanks hun, but its very much a forced 'positivity' at the moment (because I keep telling myself that its better than sitting in the corner brooding), and making the effort to try to be positive is pretty much inspired by the example of all who post on this thread, and elsewhere on TP, to be honest. So many brave, strong people, who I often think should be totally flattened by what they have been through/are going through - and they all just keep going and are all still sparing the time to bolster others when they need it, despite their own problems. It would be hard not to be inspired once you spend even a small amount of time on TP xxxx
Spamar, hope the soreness goes soon, and that your eyes feel better. Its still quite muggy during the day here, but some nights now you can feel just a little bit of a nip in the air - as I've said, I love the Summer - but cooler nights make sleeping a lot more comfortable for me x
Amy - yep, the 'reversing and repeating' ticks me off too!
Thanks Slugsta, quite often the terminology would throw me, and I'd end up wandering off down blind alley's and getting in a right pickle, probably missing a lot of pertinent information along the way! When Mil first went onto medication, it was just the lorazepam and resperidone, and I did spend some time looking them up - and found the connection between resperidone and 'Parkinsons', as well as warnings that it could increase the liklihood of strokes, very quickly. But I honestly don't remember seeing any reference to incontinence - it was actually a nurse at the incontinence clinic who told me about the connection, quite a while later. As the medication list grew, and then changed so frequently, it was harder to keep up with everything and check everything out, so I never did more than a quick search (unless tipped off by someone on TP that any particular drug was worth looking into deeper). And Mil has such a long list of other medical conditions, for which she also takes a shedload of medication - cross referencing the ailments and the drugs with the dementia meds would have been a full time job. The vast majority of her meds were dispensed in blister packs, up to the last couple of months she was home, so I didn't get the usual slips from inside the boxes/packaging that listed any side effects, either. Over and above all that, I thought that the various precribers would actually tell us if there was a particular issue we would have to look out for. It was only about 12 months ago that one of the many consultants we saw informed me that he wanted to stop the very mild anti-depressent that Mil had been on for about 10 years ( so pre-dementia diagnosis prescribed) because combined with anti-psychotic medication, it can actually intensify dementia induced delusions! Two GP's, numerous consultants both from the dementia field and from all the other medical fields that she saw over the 2 years since the first anti-psychotics were prescribed, and none had mentioned that connection. Its an absolute mine-field for the lay person - so we should be able to rely on the so-called experts giving us this sort of information when they hand out the drugs so readily
I think the notepad is a good idea - I was going to suggest that you add pages specifically for the purpose of leaving info for the carers to the care plan (most I came across were in the ring binder type folders, so it would be easy), but a separate notebook would work just as well, if not better as the pages couldn't be removed 'accidntally' - as long as you made sure that the carers know that they need to check it at the start of each visit. How infuriating about the bank card! Can you not take your Mum to a bank to draw the cash out? Mil lost loads of cards pre her moving in with us, and I know several times OH took her to the local branch to get cash when she needed it, whilst we waited for the new card to be delivered - mind you, she had a cheque book at that stage, plus the staff in the bank knew her well.
Usual jobs this morning, followed by checking my messages on FB - discovered that I haven't been getting notifications when people have messaged me - there are several folk (my sister included) who must think I've been ignoring them! Mil this afternoon and then possibly taking youngest out to get the last bits and pieces she needs for 'back to school'. I've had an email from the B.O.G chair asking for a meeting - possibly they are now aware that I've taken the complaint to the LEA, hence the very polite request for this meeting, which is very different in tone from the extremely dismissive letter he sent in response to me sending him the formal complaint!
Hope you all have a good day xxxx
Spamar, hope the soreness goes soon, and that your eyes feel better. Its still quite muggy during the day here, but some nights now you can feel just a little bit of a nip in the air - as I've said, I love the Summer - but cooler nights make sleeping a lot more comfortable for me x
Amy - yep, the 'reversing and repeating' ticks me off too!
Thanks Slugsta, quite often the terminology would throw me, and I'd end up wandering off down blind alley's and getting in a right pickle, probably missing a lot of pertinent information along the way! When Mil first went onto medication, it was just the lorazepam and resperidone, and I did spend some time looking them up - and found the connection between resperidone and 'Parkinsons', as well as warnings that it could increase the liklihood of strokes, very quickly. But I honestly don't remember seeing any reference to incontinence - it was actually a nurse at the incontinence clinic who told me about the connection, quite a while later. As the medication list grew, and then changed so frequently, it was harder to keep up with everything and check everything out, so I never did more than a quick search (unless tipped off by someone on TP that any particular drug was worth looking into deeper). And Mil has such a long list of other medical conditions, for which she also takes a shedload of medication - cross referencing the ailments and the drugs with the dementia meds would have been a full time job. The vast majority of her meds were dispensed in blister packs, up to the last couple of months she was home, so I didn't get the usual slips from inside the boxes/packaging that listed any side effects, either. Over and above all that, I thought that the various precribers would actually tell us if there was a particular issue we would have to look out for. It was only about 12 months ago that one of the many consultants we saw informed me that he wanted to stop the very mild anti-depressent that Mil had been on for about 10 years ( so pre-dementia diagnosis prescribed) because combined with anti-psychotic medication, it can actually intensify dementia induced delusions! Two GP's, numerous consultants both from the dementia field and from all the other medical fields that she saw over the 2 years since the first anti-psychotics were prescribed, and none had mentioned that connection. Its an absolute mine-field for the lay person - so we should be able to rely on the so-called experts giving us this sort of information when they hand out the drugs so readily
I think the notepad is a good idea - I was going to suggest that you add pages specifically for the purpose of leaving info for the carers to the care plan (most I came across were in the ring binder type folders, so it would be easy), but a separate notebook would work just as well, if not better as the pages couldn't be removed 'accidntally' - as long as you made sure that the carers know that they need to check it at the start of each visit. How infuriating about the bank card! Can you not take your Mum to a bank to draw the cash out? Mil lost loads of cards pre her moving in with us, and I know several times OH took her to the local branch to get cash when she needed it, whilst we waited for the new card to be delivered - mind you, she had a cheque book at that stage, plus the staff in the bank knew her well.
Usual jobs this morning, followed by checking my messages on FB - discovered that I haven't been getting notifications when people have messaged me - there are several folk (my sister included) who must think I've been ignoring them! Mil this afternoon and then possibly taking youngest out to get the last bits and pieces she needs for 'back to school'. I've had an email from the B.O.G chair asking for a meeting - possibly they are now aware that I've taken the complaint to the LEA, hence the very polite request for this meeting, which is very different in tone from the extremely dismissive letter he sent in response to me sending him the formal complaint!
Hope you all have a good day xxxx