So bizarre !
- Thread starter Ann Mac
- Start date
Oh (((Ann))) it does seem that, one way or another, you have far more 'bad' days than 'good' (and the 'good' would have been considered 'bad' not so very long ago). I'm glad that the assessment visit went well, some time off for you is a real necessity, not a luxury! I hope that the appointment goes well tomorrow, in all ways, and that the new consultant both listens and comes up with something helpful.
Grace, Essie and RL have made very good suggestions. Going away and being out of contact is possibly the only way you can be sure that MIL will not be dumped on your doorstep.
GL, you are making linctus? What a versatile man you are!
JM, a huge 'Well done' to your daughter
For years Mum and I went out for a day to do some Christmas shopping and look at the lights. For the past few years it has been a garden centre as visiting somewhere like Bath or Winchester has become too much for me. One local garden centre has a couple of live reindeer on display each year for a few weeks before Christmas and Mum has really enjoyed going to see them, looking at the tableaux of decorations, playing with the animated toys etc. Today hubs drove us over there but, other than her hot chocolate and cake, there was little that Mum wanted to see. Even the reindeer merited little more than a short visit and she was totally uninterested in anything else. I think this will be the last year we go. It's a minor thing in comparison with what so many of you go through, but it is still sad that something else has been lost
My son called briefly this morning. It was a terrible line but lovely to hear from him. He will be in Oz until 20th December, back in London on 21st.
I hope you all manage a good night's sleep.
Grace, Essie and RL have made very good suggestions. Going away and being out of contact is possibly the only way you can be sure that MIL will not be dumped on your doorstep.
GL, you are making linctus? What a versatile man you are!
JM, a huge 'Well done' to your daughter
For years Mum and I went out for a day to do some Christmas shopping and look at the lights. For the past few years it has been a garden centre as visiting somewhere like Bath or Winchester has become too much for me. One local garden centre has a couple of live reindeer on display each year for a few weeks before Christmas and Mum has really enjoyed going to see them, looking at the tableaux of decorations, playing with the animated toys etc. Today hubs drove us over there but, other than her hot chocolate and cake, there was little that Mum wanted to see. Even the reindeer merited little more than a short visit and she was totally uninterested in anything else. I think this will be the last year we go. It's a minor thing in comparison with what so many of you go through, but it is still sad that something else has been lost
My son called briefly this morning. It was a terrible line but lovely to hear from him. He will be in Oz until 20th December, back in London on 21st.
I hope you all manage a good night's sleep.
Ann - hope you have an acceptable outcome with the consultant.
Grace - you must make sure they think you are away - being somewhere else or hide the car round the corner?
slugsta - sad when they can't do things - another little bit of them gone. sounds good your son will be home for christmas.
My MIL (no dementia) had a knee op yesterday, OH wanted her to have hip on other side done as that is what caused the damage. At 88 I think she is unlikely to have another op. Her ward is closed to visitors due to norovirus so OH is hoping she doesn't catch it, but as we are 3.5 hours away we weren't planning to visit until she moved to the cottage hospital. All he's managed to get from the nurses is that she's had the op and is sleeping a lot.
Grace - you must make sure they think you are away - being somewhere else or hide the car round the corner?
slugsta - sad when they can't do things - another little bit of them gone. sounds good your son will be home for christmas.
My MIL (no dementia) had a knee op yesterday, OH wanted her to have hip on other side done as that is what caused the damage. At 88 I think she is unlikely to have another op. Her ward is closed to visitors due to norovirus so OH is hoping she doesn't catch it, but as we are 3.5 hours away we weren't planning to visit until she moved to the cottage hospital. All he's managed to get from the nurses is that she's had the op and is sleeping a lot.
Ann, Fingers and everything else crossed (makes typing difficult!) that today's meeting is as beneficial as possible and that they are able to hear your concerns and difficulties and work with you to find a way to help improve things. Take care x
Morning all,
I'm glad for your sake, Terry, that you are able to have the consitency of dealing with a consultant who has got to know your Mum - it just has to be better than feeling like each visit you are starting from scratch and that decisions made simply don't /can't take into account particular issues that the pwd has.
You know, Celia, the thought of having to 'deal' with the pharmacists, if all the meds are changed, holds as much fear for me as dealing with the seemingly inevitable side effects that Mil will probably suffer. Its like one of Mil's 'loops' dealing with the chemist - they make a mistake, I spot it and contact them to sort it, they react as though I'm the bad guy for daring to point out the error - doesn't matter how polite I try to be, or that I have no choice but to make sure Mil gets the right meds, just like Mil, they will get snotty with me And thanks for the good luck wishes, hun x
GL, pre-meds, sundowning could last for 20 hours plus, then a short break whilst she slept and straight back into it. I'm not eager to experience that again, though I see why you suggest it - if we had an assessment facility that was available for Mil to go into, whilst something like that was tried, then maybe (if we were presented with enough evidence that there could potentially be a positive outcome for her) we would give it a go - but being as the assessment ward in this county is filled with dementia EMI patients waiting for residential placements to be found, rather than being used to 'assess', that isn't going to happen
Lol Red - well, there is that I guess . . . .
Yep, I think most of us can see the sense in what Celia wrote about taking the time to get it right at the start saving a lot of time and misery in the long run, Essie - however, I think these consultants live on a different planet - a planet where if their favourite text book says 'this will work' , then they don't consider any other possible outcome. Sadly, Mil detests cherries - and as for alcohol, with a lot of her meds, booze is not advised
Grace, I think the advice to make yourself scarce over Christmas is spot on. I too have visons of Mil proving too much for her family and them trying to palm her off on you. Please take your niece up on her offer - for your own sake xxxx
Hi piph - well, as Red has already said ' Every cloud . . . ', lol. Have to thank you, by the way - the manuka was a brill suggestion! Mil's leg still isn't completely healed, but OMG - the difference since I started using the manuka!
{{{{{{{hugs}}}}}}} Slugsta - I know that feeling when you realise that yet another much enjoyed routine/tradition has now been lost to dementia The realisation that you won't be able to do 'this' or 'that' again is heartbreaking xxxxxx I bet you are so looking forward to having your son home for Christmas - I can't wait till my oldest chicks are back - and they are just an hours drive away! For all I'm on the ball with Xmas prep this year (for a change!) it won't feel like Christmas till they are here xxx
I hope your Mil recovers well and avoids the norovirus, JM - wouldn't you think that as the ward is closed, the staff would be a little more forthcoming for relatives?
Picked Mil up yesterday, she greeted us with her coat on , practically running up the hall to us when we rang the bell, no sign of her frame. What can I do? I've asked for her to be reminded to use it, but I really don't think its happening as I suspect she has 'worn them down' with her constant refusal to cooperate at DC. As soon as I got her strapped in the car, she started the rooting through her bag, looking for money so I could stop at the shops to buy her '10 ciggarettes'. After 4 or 5 loops of me explaining she didn't smoke, her continuing to root and finding she had no cash , me explaining that she was 'like the queen' and doesn't carry money, her huffily putting purse away then starting again with 'would you stop at the shops, Ann?' and opening the bag again, I took the bag off her - she was just getting crosser and ruder with every loop. Then she became convinced that she had just come out of hospital and it was questions about what did the nurse say? When does she have to go back for a check up? Did I have the tablets 'they' said she had to take? Could I give them to her now as she wanted to have them handy? She knows that I'm driving, but she would feel better if she had those tablets in her own pocket. So if I could just pass them to her - look the lights are red, I could give them to her now . . . . I was glad to get home.
And, after that, it wasn't too bad an evening. We had about an hour of the 'I'm going in the kitchen to wash up/check the cake/turn the gas off/make the lads lunches/get the money I left on the side', but other than that, she wasn't too bad! And once I got her to bed, just after 9, despite her arguing and being huffy about me helping, she stayed there.
Will be getting her up shortly and getting her ready for the appointment. Hoping that CPN doesn't have an 'emergency' that will prevent her sittingwith Mi whilst we talk to the consultant - hoping that the consultant will actually listen!
Have a good day, everyone xxxx
I'm glad for your sake, Terry, that you are able to have the consitency of dealing with a consultant who has got to know your Mum - it just has to be better than feeling like each visit you are starting from scratch and that decisions made simply don't /can't take into account particular issues that the pwd has.
You know, Celia, the thought of having to 'deal' with the pharmacists, if all the meds are changed, holds as much fear for me as dealing with the seemingly inevitable side effects that Mil will probably suffer. Its like one of Mil's 'loops' dealing with the chemist - they make a mistake, I spot it and contact them to sort it, they react as though I'm the bad guy for daring to point out the error - doesn't matter how polite I try to be, or that I have no choice but to make sure Mil gets the right meds, just like Mil, they will get snotty with me
And thanks for the good luck wishes, hun xGL, pre-meds, sundowning could last for 20 hours plus, then a short break whilst she slept and straight back into it. I'm not eager to experience that again, though I see why you suggest it - if we had an assessment facility that was available for Mil to go into, whilst something like that was tried, then maybe (if we were presented with enough evidence that there could potentially be a positive outcome for her) we would give it a go - but being as the assessment ward in this county is filled with dementia EMI patients waiting for residential placements to be found, rather than being used to 'assess', that isn't going to happen
Lol Red - well, there is that I guess . . . .
Yep, I think most of us can see the sense in what Celia wrote about taking the time to get it right at the start saving a lot of time and misery in the long run, Essie - however, I think these consultants live on a different planet - a planet where if their favourite text book says 'this will work' , then they don't consider any other possible outcome. Sadly, Mil detests cherries - and as for alcohol, with a lot of her meds, booze is not advised
Grace, I think the advice to make yourself scarce over Christmas is spot on. I too have visons of Mil proving too much for her family and them trying to palm her off on you. Please take your niece up on her offer - for your own sake xxxx
Hi piph - well, as Red has already said ' Every cloud . . . ', lol. Have to thank you, by the way - the manuka was a brill suggestion! Mil's leg still isn't completely healed, but OMG - the difference since I started using the manuka!
{{{{{{{hugs}}}}}}} Slugsta - I know that feeling when you realise that yet another much enjoyed routine/tradition has now been lost to dementia
The realisation that you won't be able to do 'this' or 'that' again is heartbreaking xxxxxx I bet you are so looking forward to having your son home for Christmas - I can't wait till my oldest chicks are back - and they are just an hours drive away! For all I'm on the ball with Xmas prep this year (for a change!) it won't feel like Christmas till they are here xxxI hope your Mil recovers well and avoids the norovirus, JM - wouldn't you think that as the ward is closed, the staff would be a little more forthcoming for relatives?
Picked Mil up yesterday, she greeted us with her coat on , practically running up the hall to us when we rang the bell, no sign of her frame. What can I do? I've asked for her to be reminded to use it, but I really don't think its happening as I suspect she has 'worn them down' with her constant refusal to cooperate at DC. As soon as I got her strapped in the car, she started the rooting through her bag, looking for money so I could stop at the shops to buy her '10 ciggarettes'. After 4 or 5 loops of me explaining she didn't smoke, her continuing to root and finding she had no cash , me explaining that she was 'like the queen' and doesn't carry money, her huffily putting purse away then starting again with 'would you stop at the shops, Ann?' and opening the bag again, I took the bag off her - she was just getting crosser and ruder with every loop. Then she became convinced that she had just come out of hospital and it was questions about what did the nurse say? When does she have to go back for a check up? Did I have the tablets 'they' said she had to take? Could I give them to her now as she wanted to have them handy? She knows that I'm driving, but she would feel better if she had those tablets in her own pocket. So if I could just pass them to her - look the lights are red, I could give them to her now . . . . I was glad to get home.
And, after that, it wasn't too bad an evening. We had about an hour of the 'I'm going in the kitchen to wash up/check the cake/turn the gas off/make the lads lunches/get the money I left on the side', but other than that, she wasn't too bad! And once I got her to bed, just after 9, despite her arguing and being huffy about me helping, she stayed there.
Will be getting her up shortly and getting her ready for the appointment. Hoping that CPN doesn't have an 'emergency' that will prevent her sittingwith Mi whilst we talk to the consultant - hoping that the consultant will actually listen!
Have a good day, everyone xxxx
Thanks everyone xxx
Appointment went - well, as these appointments go, I guess! I think the CPN had 'primed' the new locum - he started by apologising for the massive medication changes of the last few months and stating that he was well aware that dealing with them, and the side effects, must have been 'very difficult' (so tempted to say "No S*** Sherlock" at that point!). Anyway, we basically said we needed an effective prn med for when Mil headed down the road of extreme agitation and something that would help her (and us) not have to deal with night time disturbances. Upshot is Bye-bye lorazepam - thank goodness - hello diazepam. 2mg, twice dialy, if needed. However, as I pointed out, Mil can flip on a sixpence and diaz takes up to 2 hours to be effective, during which time she can get worked up to the point where she is at increased risk because of the behaviour - and we are on our knees with stress. He agreed, but said that he didn't know of any med that would work 'much' quicker, other than lorazepam - which often becomes ineffective, as it has with Mil. So we are back to I suppose either 'guessing' when she is likely to blow, and regular dosing 'just in case' - or resigning ourselves to up to 2 hours of upset before the meds given actually have an effect once she does get worked up. He (I felt) neatly side stepped advising which route would be better. The sleeping med is also to be changed, but at a later date, so that the intro of two new meds doesn't muddy the waters if there are any side efect - makes sense, I guess, but may mean another 6 weks or so of several nights a week where Mil won't settle.
Not sure how I feel about the whole thing. I'd like to hope this will be better, but not convinced after the last few months.
On the plus side, picked up Mils prescriptions and they were, FOR THE FIRST TIME IN 5 MONTHS - correct!!! May just treat myself to a small brandy from the Christmas cake supply to recover from the shock later
Just waiting to hear now when the new script for diaz will be ready x
Appointment went - well, as these appointments go, I guess! I think the CPN had 'primed' the new locum - he started by apologising for the massive medication changes of the last few months and stating that he was well aware that dealing with them, and the side effects, must have been 'very difficult' (so tempted to say "No S*** Sherlock" at that point!). Anyway, we basically said we needed an effective prn med for when Mil headed down the road of extreme agitation and something that would help her (and us) not have to deal with night time disturbances. Upshot is Bye-bye lorazepam - thank goodness - hello diazepam. 2mg, twice dialy, if needed. However, as I pointed out, Mil can flip on a sixpence and diaz takes up to 2 hours to be effective, during which time she can get worked up to the point where she is at increased risk because of the behaviour - and we are on our knees with stress. He agreed, but said that he didn't know of any med that would work 'much' quicker, other than lorazepam - which often becomes ineffective, as it has with Mil. So we are back to I suppose either 'guessing' when she is likely to blow, and regular dosing 'just in case' - or resigning ourselves to up to 2 hours of upset before the meds given actually have an effect once she does get worked up. He (I felt) neatly side stepped advising which route would be better. The sleeping med is also to be changed, but at a later date, so that the intro of two new meds doesn't muddy the waters if there are any side efect - makes sense, I guess, but may mean another 6 weks or so of several nights a week where Mil won't settle.
Not sure how I feel about the whole thing. I'd like to hope this will be better, but not convinced after the last few months.
On the plus side, picked up Mils prescriptions and they were, FOR THE FIRST TIME IN 5 MONTHS - correct!!! May just treat myself to a small brandy from the Christmas cake supply to recover from the shock later
Just waiting to hear now when the new script for diaz will be ready x
I suspect he's implying your wishes come first and what you think is what matters. IE if you need to choose regular dosing, go for it and don't worry.
You don't need his imprimatur, Ann, and you don't need to feel guilty about regular doses if the two-hour wait is too grim. After all, it's not just you, the carers, who suffer as she works herself into a state.
Glad the pharmacists got their act together. *faints*
Oooh, hark at you with your big words RedLou I had to look up 'imprimatur' (and I am pretty good with words)!
Ann, I am so glad that the appt went relatively well. Isn't it sad that someone's wellbeing should depend on luck rather than the expertise of people who are supposed to help? I understand your misgivings about the added wait for night sedation but it is a good idea to change only 1 thing at a time. I'm also glad that the pharmacy got it right - but appalled that you have had a full 5 monthsof recurrent problems. It is really not good enough! I do hope that the new meds are helpful - and that you get them without any problems!
Yesterday I learned that my father's cousin is in our area on a quick coach holiday, so today hubs and I went to have coffee with her and her daughter. She is 91 now and every time I see her I expect it to be the last. Her body has almost given out but her brain is quite sharp - what a shame that they don't both fail at the same time!
I had to look up 'imprimatur' (and I am pretty good with words)!Ann, I am so glad that the appt went relatively well. Isn't it sad that someone's wellbeing should depend on luck rather than the expertise of people who are supposed to help?
I understand your misgivings about the added wait for night sedation but it is a good idea to change only 1 thing at a time. I'm also glad that the pharmacy got it right - but appalled that you have had a full 5 monthsof recurrent problems. It is really not good enough! I do hope that the new meds are helpful - and that you get them without any problems! Yesterday I learned that my father's cousin is in our area on a quick coach holiday, so today hubs and I went to have coffee with her and her daughter. She is 91 now and every time I see her I expect it to be the last. Her body has almost given out but her brain is quite sharp - what a shame that they don't both fail at the same time!
Hope all is well today Ann. Just a thought, 2mg of Diazepam is not a very big dose so I would imagine that giving it reasonably regularly should have more benefit than disadvantage. But I am sure it has to be on a trial and error basis and seeing if it impacts on any of her non dementia medical issues such as her COPD as these types of meds can have an effect on respiratory disease. However, that is usually when it's prescribed in much higher doses (can be 20mg plus with the usual recommendation that the elderly are given half the recommended dosage) Fingers crossed it helps, glad you seem to have had a better appointment and hooray re the pharmacist! xx
Morning all,
Gremlins were having fun here yesterday, I think - tried to log on to TP several times in the morning, but the computer said 'No'!
I know you guys are right about changing one med at a time - and I definitely did not want the several meds all being changed at once scenario that I've had to deal with twice in the last couple of months. I think I was just fed up when I last posted - Slugsta, you more or less hit the nail on the head. Its that feeling that its more reliant on 'luck' than judgement when it comes to finding something that will help Mil (and us). It brings home to you just how desperate the need for research into medication/treatment to relieve the symptoms is (along with research into the actual cure) when you see consultant after consultant and all they can do is try this or that, without any of them being able to be sure that 'this' or 'that' will actually help! Rather than actual effective treatment, its like Mil - and any one else in her situation - is just a guinea pig. I suppose I want to be told that something will help - not 'Lets try this one - it might help'!
pip, we gets odd runs of Mil's bed being soaked even when she has kept the pull ups on - I just dont think that the pull ups that are available can always cope with the amount of urine an adult can sometimes produce I think the 'magic pj's ' help by keeping the pads in place even when soaked, which reduces leakage, but there are just some nights - and it can be that we get several of these nights in a row/over a week - when its simply a case of the pull ups not being absorbant enough. And I have even found this with the 'extra super-dooper absorbant' pants I've bought off the internet at times What has seemed to make a difference is stopping the respiredone, though - so its definitely worth checkingwith your GP over the meds, just in case.
You're probably right, Red, about the consultant feeling that its our 'choice' - it just would be so nice if one of these flipping 'experts' could actually give better guidence! After talking with OH, we have started with half the daily dose - so just one 2mg tablet - given once rather than twice a day, and we are giving it at tea time. We're going to try that for a week. And just hope, I guess!
I nearly fell over when I realised that the meds were actually correct too, Slugsta! Although I did the usual phoning them 3 days before (and again had to remind them that the medication for constipation was stopped a long time ago!) I still didn't have much hope that it would be right, so that was a nice surprise. Good on your Auntie, still getting out and about and enjoying life at her age - hope you enjoyed coffee with her
Thanks for the info Celia - I had read somewhere, ages ago, that there was a chance of impact on her breathing, but until I read your post, I admit I'd forgotten - and of course, the consultant didn't say anything! Total maximum dose is only 4mg, and we are only giving 2mg to start, so hopefully, she will be OK.
The CPN did carry Mil 'off for a chat' 10 minutes into the appointment - after she had had a brief chat with the consultant, which included her telling him that she had only just transferred to this particular 'GP practise' and her telling him that the frame was a pain when she tried to go off shopping in town by herself with it He told her he ddn't think it was a good idea if she went off shopping by herself, but she assured him she managed that with no problems
By the time we arrived at DC, I think she had completely forgotten the appointment - she looked very surprised when I told the senior carer, very deliberately in her earshot, that the doctor had said she MUST use the frame. 'When did a doctor say that?' she wanted to know.
We gave her the first dose of diaz when she got home that night. Very hard to judge the impact, as she was clearly tired to start with, as she can be some evenings. We had several comments about home, but again (as it can be some evenings) they didn't really go anywhere and no big agitation. Bed at just after 9 - and back down at just after 10, again 'blanking' me and focusing on getting OH's attention. But, when she was sent back to bed, this time, she stayed there.
However, yesterday morning was one of the worst I have had with her, in terms of how really horrible she was to me She started by getting up before 6a.m. saying she had to get ready for work. As per usual, I began by explaining nicely that it was OK, she had another couple of hours before she had to get up and get ready. And got a 'Thats just typical of you Ann - you'll lie through your teeth to get me into trouble!' - before she stomped back up the stairs. At just after 7, in the thick of getting youngests brekkie and doing her lunch box, Mil came down again - and again, I told her it was too early. A 'For Gods sake' and back up she went. When dau finished with the bathroom at 7.30, I went up to get washed and dressed - and came down to find Mil again downstairs and ordering youngest to let her into the kitchen. When I asked her to go back up and said I'd be there to help her in 5 minutes, I got called a couple of not nice names before she again stomped back up.
Less than 5 minutes later I went up, only to find Mil - well - she was absolutely blazing. Really cross. She was lying in her bed and initially refused to move. There were comments about how she didn't see why she should 'oblige' me after what I'd done I didn't even attempt to get into that one, just kept repeating instructions for her to get up until I eventually got her into the bathroom. Then it was a case of her seeing just how uncooperative and rude she could be. 'Can you take the Pj's off, Hun, so you can have a wash?' was met with a mocking 'Can I take them off? Ooooooh - lets see. I suppose I could - in my own good time! I swear I did try to stay polite and I guess 'detatched', but after 15 minutes she really ticked me off. She refused point blank to have her hair washed - on the grounds that if she let a B*** like me wash her hair, I'd probably drown her! (at that point my unspoken but instantly thought response was 'Don't put idea's in my head, dear!') . Each step of getting her washed was accompanied by some really nasty digs and comments and though I did my best to ignore, I know I was getting crosser too. Then, when I got the brush and paste ready for her to do her teeth, I got really fed up after 5 minutes of being told that she would do her teeth 'in a minute', when she was 'ready', when it 'suited' her, in her 'own good time', while I stood there like an idiot holding the darn brush and waiting for her to decide. In the end, I said 'OK - enough', put the brush down and started to gather up the towels and flannels for the wash, telling her to 'please herself'. 'Oh - I will' she said and with a big grin walked out of the bathroom with teeth unbrushed and breath stinking. Past caring I simply headed downstairs, leaving her to cope with fastening her own flipping bra - she stood on the landing calling me names as I marched down the stairs.
Got down to find OH was up and I told him I wouldn't be doing anything else to help her that morning - or at all, until she apologised. He got her brekkie and meds, and had a go at doing her hair - it really needed washing as I think they had been playing about with spray in DC the day before, so that wasn't exactly successful. She also kept up the 'attitude' towards me, telling OH I deserved it as I was a ***** towards her, and refusing to listen to anything he said. She insisted that sher had done nothing, had just been minding her own business when I 'went for her, for no reason'! I just blanked her, didn't respond to anything and got on with several other little jobs. It seemed that by OH helping her, rather than me, she felt she had somehow got 'one over' on me, judging by the way she was behaving and the things she said - though I don't know why. I was glad to see the back end of her when the mini bus pulled up, because by then, I was the one in a foul mood. I told OH I'd had enough for now, and that I wouldn't be having anything to do with her at all, for the rest of the day.
And I stuck to that, when she came home. I avoided speaking to her, and though I cooked her meal, I let OH deal with everything else, including getting her to bed. It wasn't to 'get' at her, it was simply that I knew that I wasn't prepared to deal with her starting again - I needed a break. She spent a good bit of the evening in her room - I got glared at when she was downstairs, but I do think she realised it wasn't a good idea to push me, so she contented herself with the dirty looks.
Once she had been given her evening meds, OH told me that day care reported she had been very 'weepy' all day and 'different' than usual. But how much any of this behaviour is down to the diaz, and how much is down to the sniffles, which I noticed she was starting with last night, is currently anyones guess!
S*ds law that we have an 'out of the usual' Saturday today. Last day of youngests theatre group is being marked by the whole group going to a pantomime this morning in Chester, and following that, Dau is having her hair cut and styled ready for her big sisters graduation next week. So Mils weekely visit to her mates had had to be postponed again. Can't be helped, but heaven only knows how Mamdam Mil will react! Just have to wait and see.
Hope you all have a good day xxxx
Gremlins were having fun here yesterday, I think - tried to log on to TP several times in the morning, but the computer said 'No'!
I know you guys are right about changing one med at a time - and I definitely did not want the several meds all being changed at once scenario that I've had to deal with twice in the last couple of months. I think I was just fed up when I last posted - Slugsta, you more or less hit the nail on the head. Its that feeling that its more reliant on 'luck' than judgement when it comes to finding something that will help Mil (and us). It brings home to you just how desperate the need for research into medication/treatment to relieve the symptoms is (along with research into the actual cure) when you see consultant after consultant and all they can do is try this or that, without any of them being able to be sure that 'this' or 'that' will actually help! Rather than actual effective treatment, its like Mil - and any one else in her situation - is just a guinea pig. I suppose I want to be told that something will help - not 'Lets try this one - it might help'!
pip, we gets odd runs of Mil's bed being soaked even when she has kept the pull ups on - I just dont think that the pull ups that are available can always cope with the amount of urine an adult can sometimes produce
I think the 'magic pj's ' help by keeping the pads in place even when soaked, which reduces leakage, but there are just some nights - and it can be that we get several of these nights in a row/over a week - when its simply a case of the pull ups not being absorbant enough. And I have even found this with the 'extra super-dooper absorbant' pants I've bought off the internet at times What has seemed to make a difference is stopping the respiredone, though - so its definitely worth checkingwith your GP over the meds, just in case.You're probably right, Red, about the consultant feeling that its our 'choice' - it just would be so nice if one of these flipping 'experts' could actually give better guidence! After talking with OH, we have started with half the daily dose - so just one 2mg tablet - given once rather than twice a day, and we are giving it at tea time. We're going to try that for a week. And just hope, I guess!
I nearly fell over when I realised that the meds were actually correct too, Slugsta! Although I did the usual phoning them 3 days before (and again had to remind them that the medication for constipation was stopped a long time ago!) I still didn't have much hope that it would be right, so that was a nice surprise. Good on your Auntie, still getting out and about and enjoying life at her age - hope you enjoyed coffee with her
Thanks for the info Celia - I had read somewhere, ages ago, that there was a chance of impact on her breathing, but until I read your post, I admit I'd forgotten - and of course, the consultant didn't say anything! Total maximum dose is only 4mg, and we are only giving 2mg to start, so hopefully, she will be OK.
The CPN did carry Mil 'off for a chat' 10 minutes into the appointment - after she had had a brief chat with the consultant, which included her telling him that she had only just transferred to this particular 'GP practise' and her telling him that the frame was a pain when she tried to go off shopping in town by herself with it
He told her he ddn't think it was a good idea if she went off shopping by herself, but she assured him she managed that with no problems By the time we arrived at DC, I think she had completely forgotten the appointment - she looked very surprised when I told the senior carer, very deliberately in her earshot, that the doctor had said she MUST use the frame. 'When did a doctor say that?' she wanted to know.
We gave her the first dose of diaz when she got home that night. Very hard to judge the impact, as she was clearly tired to start with, as she can be some evenings. We had several comments about home, but again (as it can be some evenings) they didn't really go anywhere and no big agitation. Bed at just after 9 - and back down at just after 10, again 'blanking' me and focusing on getting OH's attention. But, when she was sent back to bed, this time, she stayed there.
However, yesterday morning was one of the worst I have had with her, in terms of how really horrible she was to me
She started by getting up before 6a.m. saying she had to get ready for work. As per usual, I began by explaining nicely that it was OK, she had another couple of hours before she had to get up and get ready. And got a 'Thats just typical of you Ann - you'll lie through your teeth to get me into trouble!' - before she stomped back up the stairs. At just after 7, in the thick of getting youngests brekkie and doing her lunch box, Mil came down again - and again, I told her it was too early. A 'For Gods sake' and back up she went. When dau finished with the bathroom at 7.30, I went up to get washed and dressed - and came down to find Mil again downstairs and ordering youngest to let her into the kitchen. When I asked her to go back up and said I'd be there to help her in 5 minutes, I got called a couple of not nice names before she again stomped back up. Less than 5 minutes later I went up, only to find Mil - well - she was absolutely blazing. Really cross. She was lying in her bed and initially refused to move. There were comments about how she didn't see why she should 'oblige' me after what I'd done
I didn't even attempt to get into that one, just kept repeating instructions for her to get up until I eventually got her into the bathroom. Then it was a case of her seeing just how uncooperative and rude she could be. 'Can you take the Pj's off, Hun, so you can have a wash?' was met with a mocking 'Can I take them off? Ooooooh - lets see. I suppose I could - in my own good time! I swear I did try to stay polite and I guess 'detatched', but after 15 minutes she really ticked me off. She refused point blank to have her hair washed - on the grounds that if she let a B*** like me wash her hair, I'd probably drown her! (at that point my unspoken but instantly thought response was 'Don't put idea's in my head, dear!') . Each step of getting her washed was accompanied by some really nasty digs and comments and though I did my best to ignore, I know I was getting crosser too. Then, when I got the brush and paste ready for her to do her teeth, I got really fed up after 5 minutes of being told that she would do her teeth 'in a minute', when she was 'ready', when it 'suited' her, in her 'own good time', while I stood there like an idiot holding the darn brush and waiting for her to decide. In the end, I said 'OK - enough', put the brush down and started to gather up the towels and flannels for the wash, telling her to 'please herself'. 'Oh - I will' she said and with a big grin walked out of the bathroom with teeth unbrushed and breath stinking. Past caring I simply headed downstairs, leaving her to cope with fastening her own flipping bra - she stood on the landing calling me names as I marched down the stairs.Got down to find OH was up and I told him I wouldn't be doing anything else to help her that morning - or at all, until she apologised. He got her brekkie and meds, and had a go at doing her hair - it really needed washing as I think they had been playing about with spray in DC the day before, so that wasn't exactly successful. She also kept up the 'attitude' towards me, telling OH I deserved it as I was a ***** towards her, and refusing to listen to anything he said. She insisted that sher had done nothing, had just been minding her own business when I 'went for her, for no reason'! I just blanked her, didn't respond to anything and got on with several other little jobs. It seemed that by OH helping her, rather than me, she felt she had somehow got 'one over' on me, judging by the way she was behaving and the things she said - though I don't know why. I was glad to see the back end of her when the mini bus pulled up, because by then, I was the one in a foul mood. I told OH I'd had enough for now, and that I wouldn't be having anything to do with her at all, for the rest of the day.
And I stuck to that, when she came home. I avoided speaking to her, and though I cooked her meal, I let OH deal with everything else, including getting her to bed. It wasn't to 'get' at her, it was simply that I knew that I wasn't prepared to deal with her starting again - I needed a break. She spent a good bit of the evening in her room - I got glared at when she was downstairs, but I do think she realised it wasn't a good idea to push me, so she contented herself with the dirty looks.
Once she had been given her evening meds, OH told me that day care reported she had been very 'weepy' all day and 'different' than usual. But how much any of this behaviour is down to the diaz, and how much is down to the sniffles, which I noticed she was starting with last night, is currently anyones guess!
S*ds law that we have an 'out of the usual' Saturday today. Last day of youngests theatre group is being marked by the whole group going to a pantomime this morning in Chester, and following that, Dau is having her hair cut and styled ready for her big sisters graduation next week. So Mils weekely visit to her mates had had to be postponed again. Can't be helped, but heaven only knows how Mamdam Mil will react! Just have to wait and see.
Hope you all have a good day xxxx
'S*ds law that we have an 'out of the usual' Saturday today. Last day of youngests theatre group is being marked by the whole group going to a pantomime this morning in Chester, and following that, Dau is having her hair cut and styled ready for her big sisters graduation next week. So Mils weekely visit to her mates had had to be postponed again. Can't be helped, but heaven only knows how Mamdam Mil will react! Just have to wait and see.'
The above sounds like a busy day for you all Ann. Hope it goes well. G L
The above sounds like a busy day for you all Ann. Hope it goes well. G L
Morning ...
Oh Ann , what can I say... its just completely unacceptable that anyone has to fight for respite.
(I had this respite problem with my late husband, it does not surprise me it is still happening).
I wish there was something I / we TP could do. This problem is not going to go away.
Katrine
Locked cabinet is polished, double doors, glass front, beading on etched glass doors, heavy (back too thick to remove / prise 'easily'). Might cause damage, so I will just leave it, thank you.
I've thought about getting my nieces eldest to ask if she can have a look at x, but she is just a little too young to involve her in my recovery.
Family know they are mine, and I WILL be getting them back.... not sure when, but I will one day.
I've just had a 'funny' idea (I wont do it)..... get a metal detector ...
Her little bungalow is stuffed full of all kinds of things she has gathered, a lot of 'useless' stuff from charity shops... other things she has gathered, that would not
.
Ann... good luck with your phone calls. x
How about a hidden camera in your house?
