So bizarre !

love.dad.but..

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Jan 16, 2014
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Kent
I always understood consultant views or actions are senior to GPs otherwise why bother with the referral or input from a consultant! Really!!...as though caring and trying to do the best and right thing all the time for our pwd isn't hard enough! You would hope that the consultant would have sent a stern rebuke to the GP him/herself. I hope it all gets sorted.
 

70smand

Registered User
Dec 4, 2011
269
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Essex
Morning all,

Slugsta, hope you don't end up having to wait several weeks for the appointment. If you have decided to have the steroid jabs, then it would be so frustrating for you to wait so long! The weather here is mad too - from sunshine, to it pouring down in the blink of an eye. Flipping chilly too! I hope you and your OH enjoy the Prize Giving day xxx

Amy, to be honest with you, if I can manage to get resperidone (and lorazepam & diazepam, too) on an allergy list, at this stage I will definitely do it! I'm past worrying about whether something is 100% 'honest' in my dealings with doctors and consultants at the moment. My primary concern is seeing that Mil is as OK as is possible, and if doing something like that means she is 'safe' from being prescribed medication that we know doesn't help (and in fact makes matters worse) then you can bet your boots that I will give it a go - thank you so much for the suggestion, hun xxxx

Hi Moggymad - it's quite a coincidence that you suggest speaking to the GP! Becaue yesterday I had a phone call, about that very thing, which I felt was almost unbelievable! I answered the phone to find myself speaking to Mr R - the consultant psychiatrist that Mil is under, from the hospital. He asked me first if I could please explain why we did not want Mil to have resperidone. *sigh*. Thinking 'here we go again', I again explained about the lack of impact on behaviour, the worsening of parkinsonisms, the increased falls, etc., etc. I was slightly stunned when his response was to say that in that case, we were obviously being quite reasonable and sensible to say no to it! He then said to me that Mil's behaviour was deteriorating to the point of being almost unmanageble and as it was obvious that none of the medication tried so far has helped - a situation which is unusual but not unheard of, he said - then he agrees that its worth looking at giving her pain relief and trying some sort of sleeping medication. Just as I am thinking 'Halleluja - common sense at last' - he drops a bomb shell. He starts talking about Mil having frequent UTI's, that he feels that they could be having a huge impact on her 'presentation', and that he thinks she should be on some sort of maintenence anti-biotics. Should be on? I'd already had that battle and as far as I was concerned, Mil IS on prophylatic anti biotics. It turns out she isn't - the GP (who is Dr R, just to confuse maters) had once again stopped issuing prescriptions for them, just before Christmas. Obviously, we hadn't been told this (again).

Starting to steam, I asked why they had been stopped?. Dr R apparently doesn't agree with them, said Mr R - despite the fact, he added, that clearly they are one of the few things that do work for Mil. He told me that he had prescribed them for Mil, more than once - but that on each occasion, Dr R had only given a prescription for a month, and then not re-newed it. He also said he had even written to Dr R, to asked that they be given continuously - but that Dr R hadn't done so.

So then, Mr R asked would I ring Dr R on Monday, tell him that he has to prescribe the prophylactic AB's and tell him that Mil must stay on them - because, said Mr R, Dr R is more likely to listen to me than him!

Is it me, or am I right in thinking that there is something totally farcical about this situation? You really couldn't make this up, could you? A consultant can't get a GP to follow his instructions and recomendations, so asks the patients relatives to sort out the GP?

So, I will phone on Monday, be firm, shout if I have to - but this is totally ridiculous!

Mil had a case review some time around January - that's when I managed to get it noted on the front of her file that she is not to be given lorazepam or diazepam. I think that I need to ask, as suggested, that there is another meeting/review and make sure that it's understood that the AB's are not to be stopped, and that we must be consulted if there are any changes proposed to what Mil is given. I also think that - again as suggested - I make a point of asking to check what meds Mil is on, on a regular basis, just in case Dr R decides to make changes that are not only against our wishes, but more importantly, not in Mil's best interests. If there is anything positive in this, it's that at least Mr R has shown himself to have a reasonable attitude and approach to Mil's care. Its just a shame that he is unable to get the GP to listen to him, and has had to ask me for help!

Work today - a training session for my 3 peaks challengers. However, 2 are ill and the weather forecast isn't good, so I think todays session may be cut short. Which will at least leave me being owed slightly less hours I guess.

Thank you all so much for the support and advice, yet again. I find that I often question myself when dealing with the CH (or consultants or GPs) wondering if I am being unreasonable or asking for too much when it comes to Mil's care - your reassurances make such a difference, and I can't tell you all how much I appreciate having you lovely people at my back!

Much love to all of you, hope you all have a good weekend xxxx

Totally amazed at your mil’s nursing home, in that I thought it was just my dad’s where things like this happened! Luckily, it is noted he is allergic to risperidone, but the go at the home did decide to put him on lorazepam, admittedly only 0.5 mg because he was agitated on personal care in the morning- so what time was he prescribed it? 10 am, after he was washed and dressed and personal care was over and he was like a zombie, unable to wake up or walk for the rest of the day! I had to wait a week for the gp to come back again to stop it and that was back in November. Last week dad was a bit drowsy for a few days and when we queried it he had been recommenced on lorazepam again and the fight I had to get it stopped when it had been started accidentally in the first place! Arghh!!!
I too have asked that family be informed of any medication changes since the GP does not know my dad but am not convinced it will happen:mad:
 

Slugsta

Registered User
Aug 25, 2015
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0
South coast of England
Afternoon all,

Ann, what an utterly ridiculous situation!! Are there any other GPs (even from the same practice) that would cover the home? I know it is convenient for them to have just on GP for everyone but the patient should still have the right to choose - and it is hard to imagine that anyone else could be worse :mad: I wonder how the consultant became aware of the situation?

Amy and Celia have made very good suggestions.

Happy Birthday Jm and welcome to the ranks of the 'Golden Girls' (I remain one of these for the next 4 months) :) I hope that the parties go well, you have a great time, are treated royally - and are spared any meltdowns (((hugs)))

Spamar, I am glad that you - finally - seem to be improving and hope that continues until you are completely back to normal (((hugs)))

It was OH's prize-giving yesterday. Just an hour, thankfully. I was glad I had gone, partly because OH wanted me to and partly because he clearly needed an escort home to ensure no-one mugged him for his cash prize of £10 :D

The weather is still miserable here :(
 

Amy in the US

Registered User
Feb 28, 2015
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USA
Ann, you couldn't make it up. I'm so sorry. I hope that getting MIL off the respiridone and onto the pain relief she prophylactic antibiotics, will give her some relief. What an unbelievable situation.

@jugglingmum, wishing you and Miss JM a very happy birthday and hope you're having a good visit with the Colorado family.

Spamar, I think you are definitely sounding better, at last. Wishing you, and everyone, better health!

Slugsta, tell Mister Slug not to spend all of it in one place! (Do you have that saying in the UK?)
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Morning everyone,

JM,

Happy 50th Birthday xxxx

I really hope that your party last night went brilliantly for you and that you enjoyed it x And hoping that your dau's party today also goes well x Your birthday cake sounds lush, btw :D

Spamar, glad you were able to enjoy your coffee again, at last! I bought biscuits (just for dau, I told myself as I bought them!) but caved yesterday afternoon and had 2 :oops: I'm finding it hard to stick to the diet, though I am trying - eating at regular times is the biggest problem, I'm finding that I am snacking on the not so good stuff, instead of having a proper lunch, and I have a bad trick of not having brekkie. I will have to try harder!

Celia, the letters are a good idea - if its in writing, then it's surely harder to ignore? Though given this GP's track record, I'm sure he will try!

Lol Moggymad - rather than a medical mediator, I am starting to feel that I'm gaining the rep of being a demanding pain in the neck, tbh - which frustrates me, and which is the last thing I want to be. I find it so unfair that when you move through the stages of asking nicely (repeatedly), to asking firmly (only to still be ignored) to eventually being forced to kick up a fuss and still constantly having to check on the situation (even when you have other things that in all honesty you would much rather be doing), that you're left feeling like you are some sort of screaming, unreasonable, nagging nuisance!

love.dad.but... - I also thought that the consultants decisions took priority! It seems Dr R missed that particular memo!

70smand - I am so sorry that you have a similar situation :( But at the same time, and I hope his doesn't sound awful, there is some comfort in knowing that this situation is something that others are also having to deal with. I hope that your Dad's CH actually do you keep you informed on med changes - and that if there is an issue with anything prescribed, that they sort it quickly for you x

Slugsta, Mil moving to the home coincided with the fab GP she had when she lived here, retiring. Our surgery is now being run by locums, so it seemed to make sense that we went with the GP used by the home. However, I don't know anything about the practice he operates from, it only ever seems to be his name we hear - I am going to visit Mil today, and I will try and find out if there are any other GP's in that practice who could see Mil instead, because its a good suggestion. So glad you got your OH - and the amazingly large cash prize - home safely :D

Between 2 days away from home with work, then cramming as much as I could of my usual work jobs into another 3 days (I worked yesterday morning) and the issues with Mil, I am feeling very wiped out at the moment. My plan today is to tackle the boring house jobs, visit Mil - and then try and do something nice and relaxing tomorrow, when I am taking a lieu day and OH is also on a day off. Of course, I have to fit in the phone call to Mil's GP tomorrow too - I just have to hope that I am able to talk to him early on, and am not left in the situation of having to wait till he decides to call me back!


Hope you all have a good day, much love to all xxxx
 

Slugsta

Registered User
Aug 25, 2015
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South coast of England
Morning all,

Happy Birthday Jm!! And here's to many more :)

Ann, I am hoping against hope that today's visit goes well and finds MIL in good form (((hugs)))

I have to go to the hospital for a blood test this morning (routine, I was amazed that they do them on Sundays!) and then await the arrival of our house guests. One of my friends from the cat forum is going to stay overnight on her way down to see family. We have met before, briefly, and chat a lot on-line, so she is certainly not a stranger - but we don't know each other well, so I am a little apprehensive.

Wishing everyone except Jm a Happy Unbirthday :)
 

RedLou

Registered User
Jul 30, 2014
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Ann - I think the consultant is being a little disingenuous here and shuffling off a situation on the basis that he hasn't got time and you have. (Well, he's an important man, isn't he? :mad: ) As far as I understand it, a GP has the right to refuse to issue prescriptions that he takes responsibility for. But a consultant could issue prescriptions instead himself. Either way, you're caught in the middle of a power battle. (This happened to my daughter a bit on the baby ICU. Was infuriating that it added to her stress at that time.) Good luck. Hope you get to enjoy your day off.
JM - Happy Birthday! Hope your weekend goes with smiles and laughter.
Glad you are recovering, Spamar.
And Amy - can you point me to your thread? I miss you if I don't catch up with you in here.
Love to all.
 

jugglingmum

Registered User
Jan 5, 2014
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0
Chester
thanks for all your best wishes - I'm not 50 yet - tuesday is the actual day.

Guests who live a few miles north of us and a few miles south had had heavy rain but we escaped it so the BBQ took place and son enjoyed cooking it
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
A May kitten! You share a birthday with one of my cousins, easy to remember for another year!
Glad the BBQ went well.
We had rain last night, not sure what time, not BBQ time, anyway. It’s not misty, windy and just a few small raindrops! Not warm, either. Seriously thinking of lighting fire! Well, I’m definately now going out!

So Happy Birthday for Tuesday. Will you be working? Either way, have a great day!
 

clarice2

Registered User
Mar 13, 2016
74
0
A May kitten! You share a birthday with one of my cousins, easy to remember for another year!
Glad the BBQ went well.
We had rain last night, not sure what time, not BBQ time, anyway. It’s not misty, windy and just a few small raindrops! Not warm, either. Seriously thinking of lighting fire! Well, I’m definately now going out!

So Happy Birthday for Tuesday. Will you be working? Either way, have a great day!
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Morning all,

JM, I'm glad the party went well for you, and that you got decent weather for your BBQ. And I hope that you have a lovely day on Tuesday, too xxxx

Slugsta, I hope you enjoyed meeting your 'Cat' friend and that the visit went well. Our local hospital also does appointments for blood tests (and X rays) at the weekend, and I found the idea of it very strange too!

Spamar, it's really chilly here too - we unlike JM - had heavy rain on and off through Saturday, and our heating was back on late Sat afternoon! Wish Spring would start properly !

Red, the consultant said he has issued prescriptions - but the GP then doesn't run them as repeats, and stops them after a short time. I agree - I've been put right in the middle of two so called experts, who are putting their conflict of opinion over and above Mil's needs. It's infuriating! And unfair - but how to stop other than by me steeping up and intervening, I honestly don't know :(

BTW - how's your daugter and that gorgeous grandbaby of yours? I think we are due at least one photograph, you know :D xxxx

Went to visit Mi yesterday, and made a point of chatting with the nurse on duty before seeing her. Resperidone has definitely been stopped - the nurse expressed her relief at this, because she said that even though Mil was only taking them for 8 days, after day 2 or 3, she felt that there was a definite increase in Mil's level of aggression. Mil is back on the quietapine, now on 3 doses daily - that is being monitored, as yet again there is concern that it isn't actually doing anything for her in terms of lessening the agitation :( Zopiclone (sleeping tablet) is written up on her meds list, but they are still waiting for the script to arrive. Only paracetamol written up as pain relief still, but the nurse said she would be chasing that up too. No sign of maintenance anti biotics - which the nurse agreed work for Mil and really should be given. She also added resperidone, lorazepam and diazepam, to an allergies section at the front of Mils notes, when I suggested it - she said that considering the bad impact they have on Mil, describing Mil as being allergic to them was accurate as far as she was concerned - so Amy, thank you, Hun - that suggestion will hopefully ensure Mil is never given any of those drugs again! I explained about Mr R phoning me - the nurse was disgusted, described the situation as being unfair. I explained that I'd been left feeling like I'm constantly complaining at the moment, and that that wasn't what I wanted - she told me that as far as she and the staff are concerned, all I'm doing is looking out for Mil's best interests, and that I wasn't to worry about it. She apologised and said she just wished that the GP would actually listen! I asked could Mil please be seen by another GP in the practice (have looked it up, only one other GP there anyway!) and was told yes, that wouldn't be a problem. So - some things sorted, some not, but hopefully getting there - slowly!

Then to see Mil. Staff explained that she had had another bad morning, had been very agitated, and was in her room. At the last check, however, she seemed to be calming down, they said. I forgot to say that when I spoke to the senior nurse on my last visit, she mentioned how Mil - when staff managed to dodge her attempts to grab or slap them - was increasingly resorting to throwing anything she could get her hands on, both in her room and the lounge, at the staff. She has also started to deliberately break things in temper. Going into her room, the truth of that was imediately apparent. Her room is so bare now. Her window sill and dresser top used to be full of little knick-nacks, nothing heavy (because throwing stuff in temper has long happened on odd occasions, so I'd brought in light and inexpensive odds and ends for her, to try and make her room look more personalised and cosy) but now, there is absolutely nothing on either. Looking for one of the pretty throws she should have, I checked her wardrobe - all of her once framed photo's are loose in the bottom drawer, the frames obviously having been broken. No sign of the majority of the little ornaments that she had scattered around, it seems that she has thrown and broken just about all of them, too. I couldn't find eiter of her throws, only one of her teddy's were there (even Paddy the leprechaun was missing), no sign of the fiddle muff son bought her, no sign of the snakes and ladders game, and no sign of the photo albums either. She should have 20 plus DVD's - very few of them there, the few that I could find were 'burried' under pull ups in her dresser drawer, most with cracked/broken cases. I am assuming that the throws were possibly in the laundry, no idea why her teds weren't there, probably she has destroyed the books and game. It was just sad - her room looks like a very basic cell, just hospital bed, chair and drawers in there. Even the pics from her wall were in the bottom of her wardrobe, covered by one of her dressing gowns.

Wonders of wonders, however, she was sat in her chair, properly supported by both her cushions!

Mil seemed really pleased to see me, though she called me by a variety of names throughout the visit (Val, Catherine, Pat, Pam and Betty!) and at different times thought I was her sister (she had no sisters, only brothers), a workmate, a nurse and a school friend, judging by the content of the different things she said to me. I got a detailed account about the pain she has in her arm and shoulder since she 'fell off the table' (?) which halfway through the tale morphed in to it being her Auntie who was having the pain. She chuckled away telling me about how I'd got 'detention' in school last week. She also confided in me that she was 'fed up' with 'S***', (OH) and that she had lost her temper with him the night before, telling him she was sick of him coming to her house and 'cadging money off her', then going to my house and 'cadging' off me too. She was rather indignant whilst relating the story, but what blew me away was that she was so clear and coherent, and it would all sound very plausible, I would imagine, to anyone listening, who didn't know her situation! Her window looks over a small square of garden, which seems to be part of the regular path used by the staff on the way to their smoking area, and you could see the agitation bubbling away in Mil each time one of the staff passed through the garden. She was 'sick' of them 'in and out' all the time, and there were a few sudden flashes of temper and comments about how she was going to 'deck' this one, or 'slap' another. Those moments left me feeling quite wary, as the switch to her being angry was so quick and quite intense - I felt that it wouldn't have taken much for the anger to have transferred to me and perhaps turn physical, and I felt for the staff who have to deal with her when that happens.

Her TV was on, but after she twice looked at it and referred to the travel documentary that was on as being 'rubbish', I found and put her Mary Poppins DVD on - a bit of a struggle as her remote has gone, (staff think she has binned it) - but once we got it playing, it was clear she was enjoying it. I stayed for about 45 minutes (again, some of that time being spent on trying to sort the meds situation), before telling her I was going to make us a cuppa and slipping away. It did occur to me that if they were just putting the TV on, rather than setting her up with a DVD, that she was perhaps sometimes seeing news items or programmes that may trigger the delusions and cause some of her meltdowns, as has happened in the past?

So, a better visit and today, I will try and speak to the GP. Its a pain because today, OH and I have a day off together, and we had made tentative plans. I am betting that GP isn't available to speak to me when I ring, and that I am left waiting for a return call!

Hope all of you have a good day, love to all xxxxx
 

Amy in the US

Registered User
Feb 28, 2015
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USA
Ann, I'm beyond thrilled if the suggestion to label the respiridone (and other meds) as allergies, actually worked. The nurse sounds a supportive, practical sort.

I'm sorry to hear about you being stuck between the doctors. Ugh is all I have to say to that.

I am amazed to hear that MIL had her cushions!! A miracle.

My mother's room is not yet as destroyed and grim as what you described with MIL, but we definitely are heading in that direction. Some of the other residents have such tidy and cosy rooms and I wish my mother's could look like that, but she seems to have this need to have a baseline of clutter and disarray. I also notice that many of her knick knacks and stuffed toys (she loves plush toys) and so on, go missing or end up at the bottom of the wardrobe, covered with towels or pull-ups or clothes. I'm sure it's just "putting things away" or in a "safe" place but…well, you know.

It is so awful that MIL is so tormented and so much on the brink of such rage and anger. Your descriptions are heartrending. I've seen those flashes and twists of mood with my mother, but not so virulent (usually), and she can usually be redirected, whereas I know MIL simply cannot be distracted, once it takes hold. Your visits must be so hard, Ann.
 

Ann Mac

Registered User
Oct 17, 2013
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Ann, I'm beyond thrilled if the suggestion to label the respiridone (and other meds) as allergies, actually worked. The nurse sounds a supportive, practical sort.


My mother's room is not yet as destroyed and grim as what you described with MIL, but we definitely are heading in that direction. Some of the other residents have such tidy and cosy rooms and I wish my mother's could look like that, but she seems to have this need to have a baseline of clutter and disarray. I also notice that many of her knick knacks and stuffed toys (she loves plush toys) and so on, go missing or end up at the bottom of the wardrobe, covered with towels or pull-ups or clothes. I'm sure it's just "putting things away" or in a "safe" place but…well, you know.

Amy, honestly - I am so hopeful that having Mil beig listed as 'allergic' to those meds will completely stop her being prescribed them ever again. I can't tell you how grateful I am for your suggestion xxxx

Yes - I do know, hun. I think this is one of those 'things' that you encounter with dementia that just hits you and catches a raw spot. Partly, though not really one for clutter (pre-dementia), it's that Mil was quite nevertheless quite sentimental about certain things, often made by and given to her by her Grandchildren, and she liked to have them proudly on display. And she loved having photographs on her walls and shelves, especially of the kids. That dementia has taken that pleasure away from her, and now causes her to destroy things that once meant a lot is sad enough in itself. A lot of it though, is as you say - its just seeing her sitting in such a bare and institutional setting. Nothing of her personality or personal history around to make the room look inviting and cosy. Her room is grim, and depressing and I just hate the thought of her spending time in such an uninviting environment. When our pwds are better off in a residential setting, I think all of us put effort into trying to make their personal space as comfy and comforting as we can, its a way that helps us feel like we can at least do some little thing to try and make life a little more pleasant for our loved one. When dementia takes even your ability to do that away, its like yet another kick in the teeth. I've been toying with the idea of hitting a load of charity shops and buying lots of teddy's/soft toys, to put in her room as 'decoration' - she can't cause any damage from throwing things like that - but I think maybe that's just me trying to make myself feel better, because chances are she will destroy or bin them all :(
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
Morning all,

Amy, it was a great suggestion to mark MIL's records to show she is 'allergic' to respiridone and I am go glad the nurse was sensible enough to agree with this. I really hope that it takes one source of stress away from Ann.

I can understand how upsetting it must be to see our PWD's surroundings looking bare and depressing, especially when it is previously 'treasured' belongings that have been broken or lost :( I guess this might partly be because such surroundings always make it seem as if the PWD is unloved - OK, we know otherwise but there is still that little bit of us that wants them to look cared for, isn't there?

Wow, the cushions were being used! It seems that you finally got through to them Ann.

I have just spoken to my son, he says it is a beautiful day in London with narry a cloud in the sky. It looks bright here, but the maximum temperature forecast is 11c - it was warmer than that in the 'winter'!

I remember something I once read 'If we keep our nose to the grindstone, we will never stop and look at the sky'. I hope you all find time to look at the sky today (((hugs))).
 

jugglingmum

Registered User
Jan 5, 2014
7,111
0
Chester
Sunny here, but cold. OH has spent 2 hours getting our tandem into working order for a birthday ride so hopefully I'll see the sun soon
 
Last edited:

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Morning,
Yes, sunny here. It was cold earlier, haven’t been out for an hour or so. Hoping to go shopping later, plus surgery to pick up pills.
I know I’m getting better - had a quick shoulder ache, plus sore elbow! Only get arthritis when there’s nothing else going on, so back to normality!

Tandem, only been on one once. Could do with one now, somebody else could balance, and I just pedal! ( balance disappeared a few years ago, affected loads of things, still not used to saying no to things I like!)

Ann, so glad they were using cushion, not glad at state of mils room. Yes, we like to think we’re doing our best, giving then a nice environment. Fortunately, OH didn’t try any destruction, though he wasn’t in the home for very long.
I’m looking at the sky, Slugsta. ( basks in approval!)

Have a good day, folks
 

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