Hello Honey GOOD LUCK for your scan! You must be there now, having it (or still waiting!!!???). So I am sending positive thought waves and hopes for a nice cup of tea and a sandwich afterwards. The Force be with you. Love and. hugs, C. XXXXX. Oh PS I am sneaking stuff out of the house as we have a verge collection of bulk rubbish - and OH so far is not sneaking it all back in!Morning all,
Ann, how terribly upsetting to believe that MIL's distressing symptoms might be down to over-medication!Maybe she, finally, has a consultant who is willing to look at her as an individual (a human being with a past) and work to get her as well as possible, rather than just adding in more and more drugs.
I really understand why the GM attacked you over night but I think you are being too hard on yourself. You have no medical background and it is entirely likely that you could never have known about this, even if you had spent days/weeks/months researching each change of meds. It seems this situation is so unusual that no previous nurse, consultant or pharmacist has picked up on it, so the chances of you doing so are so small as to be considered impossible (((hugs)))
I have my scan this morning - the worst bit at the moment is that I have an empty tummy, so clear fluids now until the scan is over (booked for 10.30).
So bizarre !
- Thread starter Ann Mac
- Start date
Good luck with the scan, Slugsta xxx
Thank you everyone - it helps so much to get the reassurance.
My head is really whirling. There is disbelief (and a big piece of anger) that this hasn't been picked up on before, not even considered. It points to no one, not even one so called consultant or specialist having seriously looked at not only the over prescribing of anti-psychotics while it was happening, but also at not ever having considered the impact of the anti-psychotic drugs with her other medications. Very naively, I had assumed that sort of thing would have been routinely considered? And I need to know why her other meds have been so greatly increased. The nurse was open to an extent that almost took my breath away - he was very clear that this should absolutely not have happened, and he was in fact, clearly really angry about it.
He said he had gone home and hadn't been able to get her out of his head on several occasions, that other staff have also been extremely upset by seeing her suffer the way she does. That every staff there wants to help her, not see her 'shipped out' to some psychiatric unit. There is comfort in knowing that they do care. But also its difficult to realise that Mil's situation is so horrible that its having that effect, on staff who are well used to dealing with the awfulness of dementia. It brings home very starkly just how bad Mil's situation is, the depth of how much she must be suffering.
I can't even put into words how I feel about realising that if this new consultant and the nurse, are correct, then its possible that a lot of the misery Mil has suffered over the last 4 - 5 years could potentially have been avoided. I'm not saying it still wouldn't have been awful for her - the delusions began before meds were even tried - but if the meds have increased the delusions, the paranoia, the agitation, the aggression and caused her physical pain and all the additional symptoms and behaviours, then it has made an already intolerable illness so much worse - it's almost unbearable consider. Poor, poor Mil.
As for the GM - I do get what you all mean, but I know that there were lots of times when having sat and googled and read up on the meds, that I just gave up because I simply couldn't take it all in. I couldn't find the energy or drive to cross reference every single anti-psychotic drug with each and every one of the other drugs she was taking, particularly not with with the COPD or diabetic or angina meds. It took too much time and effort. Common sense tells me that probably, no one who is caring full time, or even just dealing with work and ordinary life, would have been able to keep on top of it all either. GM keeps whispering but what if I had have done - how much could Mil have been spared? If I had made more of an effort, maybe it would have made a huge difference? . There is also knowing that at times, I simply wanted to believe the consultants about this or that newly advised med, because I was just at the end of my rope dealing with this or that symptom or behaviour. That maybe, because of that, I didn't push hard enough to find out about side-effects or question them about the potential effectivenes or necessity of new meds. I was just looking for some relief for me and the family, above all else.
And niggling under all that - what if this is just another shot in the dark, another thing we try that doesn't make any flipping difference ? Oh, we have to try it - either that or accept that she is just going to continue getting worse until the move to a psychiatric unit is inevitable. But given that the result of us trying so many other things has not been positive, can't help but wonder if this is yet something else that only might not help - but perhaps make things even worse? The nurse seemed positive that it simply couldn't make things any worse for her - but we have had consultants tell us that before when a 'new' regime has been suggested - they haven't been right once yet. OH hasn't said much - he is feeling so hopeless about his Mum at the moment, he has really struggled with her violence and the injured staff in particular. He freely admits he will grab at any straw that might help, but I am sure he has the same doubts that I have. I don't want to see him deal with yet another failure in her care.
Arrrgggghhhhhh - it just never, ever stops. I don't think aything else can throw curve balls at you the way dementia does.
Thank you everyone - it helps so much to get the reassurance.
My head is really whirling. There is disbelief (and a big piece of anger) that this hasn't been picked up on before, not even considered. It points to no one, not even one so called consultant or specialist having seriously looked at not only the over prescribing of anti-psychotics while it was happening, but also at not ever having considered the impact of the anti-psychotic drugs with her other medications. Very naively, I had assumed that sort of thing would have been routinely considered? And I need to know why her other meds have been so greatly increased. The nurse was open to an extent that almost took my breath away - he was very clear that this should absolutely not have happened, and he was in fact, clearly really angry about it.
He said he had gone home and hadn't been able to get her out of his head on several occasions, that other staff have also been extremely upset by seeing her suffer the way she does. That every staff there wants to help her, not see her 'shipped out' to some psychiatric unit. There is comfort in knowing that they do care. But also its difficult to realise that Mil's situation is so horrible that its having that effect, on staff who are well used to dealing with the awfulness of dementia. It brings home very starkly just how bad Mil's situation is, the depth of how much she must be suffering.
I can't even put into words how I feel about realising that if this new consultant and the nurse, are correct, then its possible that a lot of the misery Mil has suffered over the last 4 - 5 years could potentially have been avoided. I'm not saying it still wouldn't have been awful for her - the delusions began before meds were even tried - but if the meds have increased the delusions, the paranoia, the agitation, the aggression and caused her physical pain and all the additional symptoms and behaviours, then it has made an already intolerable illness so much worse - it's almost unbearable consider. Poor, poor Mil.
As for the GM - I do get what you all mean, but I know that there were lots of times when having sat and googled and read up on the meds, that I just gave up because I simply couldn't take it all in. I couldn't find the energy or drive to cross reference every single anti-psychotic drug with each and every one of the other drugs she was taking, particularly not with with the COPD or diabetic or angina meds. It took too much time and effort. Common sense tells me that probably, no one who is caring full time, or even just dealing with work and ordinary life, would have been able to keep on top of it all either. GM keeps whispering but what if I had have done - how much could Mil have been spared? If I had made more of an effort, maybe it would have made a huge difference? . There is also knowing that at times, I simply wanted to believe the consultants about this or that newly advised med, because I was just at the end of my rope dealing with this or that symptom or behaviour. That maybe, because of that, I didn't push hard enough to find out about side-effects or question them about the potential effectivenes or necessity of new meds. I was just looking for some relief for me and the family, above all else.
And niggling under all that - what if this is just another shot in the dark, another thing we try that doesn't make any flipping difference ? Oh, we have to try it - either that or accept that she is just going to continue getting worse until the move to a psychiatric unit is inevitable. But given that the result of us trying so many other things has not been positive, can't help but wonder if this is yet something else that only might not help - but perhaps make things even worse? The nurse seemed positive that it simply couldn't make things any worse for her - but we have had consultants tell us that before when a 'new' regime has been suggested - they haven't been right once yet. OH hasn't said much - he is feeling so hopeless about his Mum at the moment, he has really struggled with her violence and the injured staff in particular. He freely admits he will grab at any straw that might help, but I am sure he has the same doubts that I have. I don't want to see him deal with yet another failure in her care.
Arrrgggghhhhhh - it just never, ever stops. I don't think aything else can throw curve balls at you the way dementia does.
Oh Ann - let's beat that GM until it is firmly in its place. There is absolutely no way the information to cross reference all the drugs together was going to be online. You couldn't have researched it. There was an article only the other week in somewhere like The Telegraph, I believe, saying that a very new line of research was looking into whether over-prescription of drugs was doing more harm than good in the elderly. I wish I could find it again. But even when I read it, I didn't think - must mention that to Ann. My first thought was, sounds as if NICE wants to cut costs, tbh. You've consistently asked questions and held the professionals to account. And no, it can't be certain dropping all the meds will help her, either. But if it does, and her physical ailments increase, then NO guilt monster!! This is dementia's fault; it is age's fault; it is not your fault. All I can say is I would hope for an advocate like you, if I ever get the damned thing.
Slugsta - good luck! Take care.
Slugsta - good luck! Take care.
Wasn’t there a program on last night on the effects on children taking lots of drugs? I didn’t see it, but there were quite a few trailers.
I can well believe that drugs interact, and rarely for the better. As one gets older, ones reaction to drugs changes as well.
That nurse deserves a medal and I’m only too aware that the consultant is pretty special as well.
Meanwhile, who has the GM stick? Please pass to AnnMac!
I can well believe that drugs interact, and rarely for the better. As one gets older, ones reaction to drugs changes as well.
That nurse deserves a medal and I’m only too aware that the consultant is pretty special as well.
Meanwhile, who has the GM stick? Please pass to AnnMac!
Ohhh the guilt monster and the “what if” questions it whispersWhat if you had done all those “what if” things it’s whispering... what then, what will it now be whispering?
I so understand those “what if” thoughts, they churn and churn and I ended up wasting time and health down a dark hole, with the “what if” non answerable questions. They really are not constructive sweetheart. Don’t think them!!! Easy typed I do know...
if there is anything you must do towards mils care in the future, the first thing you MUST do, in my opinion, is to never ever 2nd guess yourself abd definitely not listen to that evil wicked guilt monster
What is past is past, as nightmarish as it was. It’s the now and future, which isn’t going to be easy..... but with your subconscious knowledge you will have the questions to ask.
Carry on questioning those here to help, as you have been doing, I don’t think you could stop doing that, it’s who wonderful you are, and with these two medical people, this time, it is my hope, that you will get straight answers (even if they not nice answers) and no flannel from them
Deep breaths. Ignore GM and give a wide berth to that dark hole that the GM wants to put you in
Squishies xx
I agree with every word Redlou said (above)!
Ann, pharmacists study for years, to understand the effects of drugs - right down to how they act at cellular level. This is intensive study, not a walk in the park and makes pharmacists the experts in medications, their actions, side effects and interactions. And, over the years, not one of them has suggested that MIL is being over-medicated.
I am not trying to say that they are right, but that you could never have gained that kind of knowledge yourself. As Red says, that kind of information is not freely available. I don't believe you would have come to this conclusion, no matter how long and hard you tried.
Please try to give yourself a break - no-one could have been more assiduous than you when it comes to looking out for MIL's best interests (((hugs)))
Yes, of course, this could be another failed attempt - although I really hope not.
Thank you all for your kind words. My scan is done and everything is OK, not even the gallstones that my symptoms suggest (and certainly not the condition I was worrying about!) I really enjoyed my bowl of cereal when I got home.
Ann, pharmacists study for years, to understand the effects of drugs - right down to how they act at cellular level. This is intensive study, not a walk in the park and makes pharmacists the experts in medications, their actions, side effects and interactions. And, over the years, not one of them has suggested that MIL is being over-medicated.
I am not trying to say that they are right, but that you could never have gained that kind of knowledge yourself. As Red says, that kind of information is not freely available. I don't believe you would have come to this conclusion, no matter how long and hard you tried.
Please try to give yourself a break - no-one could have been more assiduous than you when it comes to looking out for MIL's best interests (((hugs)))
Yes, of course, this could be another failed attempt - although I really hope not.
Thank you all for your kind words. My scan is done and everything is OK, not even the gallstones that my symptoms suggest (and certainly not the condition I was worrying about!)
I really enjoyed my bowl of cereal when I got home.
Ann, no, please don't let the GM get you!
You and OH have made reasonable decisions, with the information you had AT THE TIME, about her care.
You cannot be expected to be medical specialists and know everything about everything! (If she had cancer, would you expect yourselves to be able to do the surgery and the chemotherapy and the radiation as well?)
I know you are horrified by the thought of MIL suffering at all, let alone needlessly (and I am right there with you, Ann), but you can only do the best you can in any given moment.
Now you know this is an option, so go forward, and please try not to look back and to beat yourself up. It won't do anyone a bit of good. Same goes for Mister Mac!
Sorry this is so short and I must run but here are many many many MANY hugs
((((((((((((((((((((((((Hugs))))))))))))))))))))))
You and OH have made reasonable decisions, with the information you had AT THE TIME, about her care.
You cannot be expected to be medical specialists and know everything about everything! (If she had cancer, would you expect yourselves to be able to do the surgery and the chemotherapy and the radiation as well?)
I know you are horrified by the thought of MIL suffering at all, let alone needlessly (and I am right there with you, Ann), but you can only do the best you can in any given moment.
Now you know this is an option, so go forward, and please try not to look back and to beat yourself up. It won't do anyone a bit of good. Same goes for Mister Mac!
Sorry this is so short and I must run but here are many many many MANY hugs
((((((((((((((((((((((((Hugs))))))))))))))))))))))
Slugsta, so glad the scan went well, and very happy that the news is so good xxx Hope you enjoyed that cereal!
Again, Massive thanks to all of you xxxx Feeling better and the GM is leaving me alone for the moment - what you all say makes sense, especially, Dear 2jays, about this now being the time to use my energy to move forward, because I can't change what has happened x
I visited Mil yesterday, and was introduced to two new members of the care team, who went over everything with me. Nurse M is medically trained and dementia experienced and the other Nurse L (I think it was 'L') is a Psychiatric Nurse who has apparently been responsible for producing a comprehensive programme in this area for providing end of life care specifically for pwd's. They, along with the nurse who phoned me (Nurse D), are clearly heavily involved in Mil's care now, so although Nurse L has only been there a few days, these 3 seem to be the people who are most 'in the know' about what is proposed for Mil. Nurse L was very definitely familiar with Mil's situation, to be fair - it's clear that she has read notes and talked to the carers.
My main concern was if the complete 'strip' of medication goes ahead, was there any possibility at all that this could make Mil's quality of life deteriorate even further? I explained that I was done with being told only about the potential positives of changes and treatments, and that I needed to know exactly what pitfalls there might be that could impact badly on Mil, before I walked into this best interest meeting. I made it very clear that I was talking about the impact on Mil's mental state, not her physical ailments. The answer was that while there was a chance that it wouldn't improve Mil's agitation (though they were very optimistic that it will) it absolutely could not make things any worse for her, in terms of the psychosis, though they did say that there might be a short period of withdrawal that could be difficult. I am as sure as I can be that they were being honest, so that's one big worry ticked off my list.
They said that while its likely that Mil's medication for the physical illnesses may be removed, some might stay if it was felt that they would prevent any physical pain or provide relief from any discomfort caused by her ailments. That answered my worry about the possibility of Mil being distressed by a deterioration in her breathing, for example.
They were both very kind and answered my questions as honestly as I felt was possible. There was a little bit of PC speak and skirting around 'difficult issues', so I very bluntly said that I understood that this strip could potentially mean shortening Mil's life, but that both OH and I would prefer her to have quality over quantity, so to speak. That we didn't want her in hospital, and that we had already said that there was to be a DNR in place. Nurse L gave me a big smile and told me 'Then we are on the same page, my love'. It was at that point that I was told about her specialism in palliative care for pwds, and the 'pathways scheme' she has been responsible for devising.
Mil's physical health is obviously deteriorating too. As well as the psychotic episodes, over the last 3 days, she has begun to refuse food and drink, and now needs assistance to eat - she has to be fed. There is no temp, no sign at all of infection, but there have been periods of non-responsiveness, in between the melt downs. Slowly, she is winding down, I guess - and as the medication strip is likely to speed up this process, she is going to be on this 'pathways scheme'. Nurse L said that OH and I would shortly be invited to a meeting where an individual plan would be drawn up and implemented for Mil. She told me that it would be a very 'personal' plan, with her asking about things like music or smells that Mil liked, so that Mil could be surrounded by things that would bring comfort to her, that it was about making Mil 'cosy and warm and relaxed and loved', that it would include things like having photographs of her lost loved ones and her family around her. That there would be hand and foot massages, all sorts of 'little details' that would be about making the end of Mils life as gentle, natural and kind as is possible - and that it would also focus on caring and supporting MIl's family and friends. That we would have every detail and action and part of the 'journey of dying' explained to us, and that our needs and wishes would be very much part of the whole process. Working in homes myself, reading posts on TP, I don't think I've come across anything quite like this before, not with this proposed level of individual needs built in - and I actually found the whole discussion incredibly positive.
The other thing of note was that I was told catagorically that should the medication 'strip' not be effective, should the agitation and 'psychosis' continue, then the home would not be going down the route of moving her to a psychiatric unit. Instead, an emergency review would be called and they would be pushing for her to have 1-1 care, paid for under the terms of 117 ! They told me that all staff, management and the new consultant felt this would be the best option for Mil, so thats what they would fight for. I said if it was refused, that we would be happy for Mils funds to be used to provide that level of care. I was told 'Not on your nelly! She is entitled to that care under the 117 and we will make sure she gets it, if it is necessary'. Knowing that they are working so hard and are so determined to keep her at the home was a massive weight lifted.
From this talk I went to see Mil. She had slept well the night before, but was in her room as she was still tired and, as the staff described, quite 'flat'. There was absolutely no spark of recognition when I went in, and she was more interested in the telly, but she did seem to enjoy me stroking her arm as we sat. Thankfully no sign of the writhing and misery that I've seen on the last couple of visits. The 'annoying' staff was on duty, and true to form she came in after I had been with Mil for about 10 minutes. There was the usual chatty nonsence and the patronising talk to Mil, but to be fair, this staff does seem fond of Mil and was clearly worried about her, so I held my tongue. However, this girl really needs some intensive dementia training! She was babbling on about the 'long and wonderful' chats she and Mil have, and said to me that Mil had told her all about how she nearly 'burned her house down making an apple pie' - and it was clear that she had taken what Mil had told her as being the absolute truth. As you may have guessed, Mil 'nearly burning the house down' had never happened - no fire engine, no firemen, no neighbours rushing to the rescue, nothing about the tale she had spun this young lady had any basis in reality. The staffs face when I explained that none of this was true was actually quite funny - she was dumbstruck. I nicely suggested that she read up about confabulations!
Last night, another call from the home. Mil had again been quite 'non-responsive' during the latter part of the afternoon, and had been placed on 15 minute obs. She had then become 'more lively', started to become a 'bit naggy' and had again managed to throw herself out of the chair, and landed on the floor. Thankfully, again no injury. But that had marked the start of another severely agitated period for her. After the reassurances and advice from you guys, and the meeting at the CH yesterday, I ended the day feeling like this medication strip can't come soon enough, for Mils sake.
Long day at work ahead (although it also promises to be a nice day, too) so I had better get cracking. Thank you all again, so much - the support from you all means a lot more that I can say xxxxxxx
Again, Massive thanks to all of you xxxx Feeling better and the GM is leaving me alone for the moment - what you all say makes sense, especially, Dear 2jays, about this now being the time to use my energy to move forward, because I can't change what has happened x
I visited Mil yesterday, and was introduced to two new members of the care team, who went over everything with me. Nurse M is medically trained and dementia experienced and the other Nurse L (I think it was 'L') is a Psychiatric Nurse who has apparently been responsible for producing a comprehensive programme in this area for providing end of life care specifically for pwd's. They, along with the nurse who phoned me (Nurse D), are clearly heavily involved in Mil's care now, so although Nurse L has only been there a few days, these 3 seem to be the people who are most 'in the know' about what is proposed for Mil. Nurse L was very definitely familiar with Mil's situation, to be fair - it's clear that she has read notes and talked to the carers.
My main concern was if the complete 'strip' of medication goes ahead, was there any possibility at all that this could make Mil's quality of life deteriorate even further? I explained that I was done with being told only about the potential positives of changes and treatments, and that I needed to know exactly what pitfalls there might be that could impact badly on Mil, before I walked into this best interest meeting. I made it very clear that I was talking about the impact on Mil's mental state, not her physical ailments. The answer was that while there was a chance that it wouldn't improve Mil's agitation (though they were very optimistic that it will) it absolutely could not make things any worse for her, in terms of the psychosis, though they did say that there might be a short period of withdrawal that could be difficult. I am as sure as I can be that they were being honest, so that's one big worry ticked off my list.
They said that while its likely that Mil's medication for the physical illnesses may be removed, some might stay if it was felt that they would prevent any physical pain or provide relief from any discomfort caused by her ailments. That answered my worry about the possibility of Mil being distressed by a deterioration in her breathing, for example.
They were both very kind and answered my questions as honestly as I felt was possible. There was a little bit of PC speak and skirting around 'difficult issues', so I very bluntly said that I understood that this strip could potentially mean shortening Mil's life, but that both OH and I would prefer her to have quality over quantity, so to speak. That we didn't want her in hospital, and that we had already said that there was to be a DNR in place. Nurse L gave me a big smile and told me 'Then we are on the same page, my love'. It was at that point that I was told about her specialism in palliative care for pwds, and the 'pathways scheme' she has been responsible for devising.
Mil's physical health is obviously deteriorating too. As well as the psychotic episodes, over the last 3 days, she has begun to refuse food and drink, and now needs assistance to eat - she has to be fed. There is no temp, no sign at all of infection, but there have been periods of non-responsiveness, in between the melt downs. Slowly, she is winding down, I guess - and as the medication strip is likely to speed up this process, she is going to be on this 'pathways scheme'. Nurse L said that OH and I would shortly be invited to a meeting where an individual plan would be drawn up and implemented for Mil. She told me that it would be a very 'personal' plan, with her asking about things like music or smells that Mil liked, so that Mil could be surrounded by things that would bring comfort to her, that it was about making Mil 'cosy and warm and relaxed and loved', that it would include things like having photographs of her lost loved ones and her family around her. That there would be hand and foot massages, all sorts of 'little details' that would be about making the end of Mils life as gentle, natural and kind as is possible - and that it would also focus on caring and supporting MIl's family and friends. That we would have every detail and action and part of the 'journey of dying' explained to us, and that our needs and wishes would be very much part of the whole process. Working in homes myself, reading posts on TP, I don't think I've come across anything quite like this before, not with this proposed level of individual needs built in - and I actually found the whole discussion incredibly positive.
The other thing of note was that I was told catagorically that should the medication 'strip' not be effective, should the agitation and 'psychosis' continue, then the home would not be going down the route of moving her to a psychiatric unit. Instead, an emergency review would be called and they would be pushing for her to have 1-1 care, paid for under the terms of 117 ! They told me that all staff, management and the new consultant felt this would be the best option for Mil, so thats what they would fight for. I said if it was refused, that we would be happy for Mils funds to be used to provide that level of care. I was told 'Not on your nelly! She is entitled to that care under the 117 and we will make sure she gets it, if it is necessary'. Knowing that they are working so hard and are so determined to keep her at the home was a massive weight lifted.
From this talk I went to see Mil. She had slept well the night before, but was in her room as she was still tired and, as the staff described, quite 'flat'. There was absolutely no spark of recognition when I went in, and she was more interested in the telly, but she did seem to enjoy me stroking her arm as we sat. Thankfully no sign of the writhing and misery that I've seen on the last couple of visits. The 'annoying' staff was on duty, and true to form she came in after I had been with Mil for about 10 minutes. There was the usual chatty nonsence and the patronising talk to Mil, but to be fair, this staff does seem fond of Mil and was clearly worried about her, so I held my tongue. However, this girl really needs some intensive dementia training! She was babbling on about the 'long and wonderful' chats she and Mil have, and said to me that Mil had told her all about how she nearly 'burned her house down making an apple pie' - and it was clear that she had taken what Mil had told her as being the absolute truth. As you may have guessed, Mil 'nearly burning the house down' had never happened - no fire engine, no firemen, no neighbours rushing to the rescue, nothing about the tale she had spun this young lady had any basis in reality. The staffs face when I explained that none of this was true was actually quite funny - she was dumbstruck. I nicely suggested that she read up about confabulations!
Last night, another call from the home. Mil had again been quite 'non-responsive' during the latter part of the afternoon, and had been placed on 15 minute obs. She had then become 'more lively', started to become a 'bit naggy' and had again managed to throw herself out of the chair, and landed on the floor. Thankfully, again no injury. But that had marked the start of another severely agitated period for her. After the reassurances and advice from you guys, and the meeting at the CH yesterday, I ended the day feeling like this medication strip can't come soon enough, for Mils sake.
Long day at work ahead (although it also promises to be a nice day, too) so I had better get cracking. Thank you all again, so much - the support from you all means a lot more that I can say xxxxxxx
In the negative world around mil and her agitation, everything you have written about your meeting yesterday seems such a positive towards the future for you Mac’s
No it isn’t going to be easy for any of you, I just seems to me that there is a possibility that there may be some peace for you all. Mil may never be totally calm, but at least everything possible will have been tried.
Don’t know if that’s come out quite how I meant it, just know that we are all behind you, holding your hand really tight when needed, or not, and instead of guilt monster on your shoulder, it will be us sitting there encouraging and supporting you
Without question you will also be squished with hugs at any opportunity
No it isn’t going to be easy for any of you, I just seems to me that there is a possibility that there may be some peace for you all. Mil may never be totally calm, but at least everything possible will have been tried.
Don’t know if that’s come out quite how I meant it, just know that we are all behind you, holding your hand really tight when needed, or not, and instead of guilt monster on your shoulder, it will be us sitting there encouraging and supporting you
Without question you will also be squished with hugs at any opportunity
Im so glad that those three nurses and the consultant are taking everything so seriously. In with all the negatives this is a positive. Also good that she will not have to go back to a psychiatric unit and they will keep her in her care home to the end.
Im relieved to hear that the GM is leaving you alone; I was looking out my bossy knickers to say there was no way you could have found out about the possible interactions and there was no one who could have done more, but everyone else has said it better than I could possibly have done. None of this is your fault and if this next regime of stripping out all of her drugs doesnt work either, it is still not your fault.
(((((hugs))))
Im relieved to hear that the GM is leaving you alone; I was looking out my bossy knickers to say there was no way you could have found out about the possible interactions and there was no one who could have done more, but everyone else has said it better than I could possibly have done. None of this is your fault and if this next regime of stripping out all of her drugs doesnt work either, it is still not your fault.
(((((hugs))))
I too find that incredibly positive. I am so glad that some people are now looking at the quality v quantity issue. Did anyone see 'Ambulance' last night? When they carted the poor woman with late stage dementia off to A&E I was wondering why they weren't giving pain relief at home and accepting that her body had just had enough. Sure enough, she died within weeks anyway. So well done to this team, and for talking to you in depth and for fighting for MiL. And while we're on the subject of the GM - how come he doesn't allow you to feel proud of what you've achieved in keeping her at home for so long and for her being in a good nursing home now, and for you being such a splendid advocate? Be careful or the pom poms will be coming out the Bizarrites' cupboard!
Wishing everyone as restorative a long weekend as may be hoped. x
Wishing everyone as restorative a long weekend as may be hoped. x
Afternoon all,
Ann, I agree that the meeting sounds very positive. It is clear that there are people who understand PWDs, are expert in their care and are fond enough of MIL to want what is best for her.
The very individualised plan sounds wonderful! TBH, the staff at Mum's home were very good but no-one ever suggested things like hand/foot massages. Of course, it could be that - given how much Mum hated any personal care - they had already decided (correctly in my view) that this would not be welcomed. Nevertheless, the fact that MIL seemed to enjoy having her arm gently stroked does suggest that this is something she might enjoy.
I also completely agree with the previous comments about the fact that you have absolutely nothing with which to reproach yourself regarding MIL'S care. You had her to live in your home out of love and kept her with you for far longer than many of us would have managed. You have fought for her every step of the way and will continue to do so for as long as necessary. You deserve a bloomin medal yer daft wench! (((hugs)))
The weather is cooler today and the forecast is very mixed - we are due temps in the low 20sC but also quite a lot of rain, so I expect the humidity will be high. Nevertheless, I hope everyone has a great bank hol weekend.
Ann, I agree that the meeting sounds very positive. It is clear that there are people who understand PWDs, are expert in their care and are fond enough of MIL to want what is best for her.
The very individualised plan sounds wonderful! TBH, the staff at Mum's home were very good but no-one ever suggested things like hand/foot massages. Of course, it could be that - given how much Mum hated any personal care - they had already decided (correctly in my view) that this would not be welcomed. Nevertheless, the fact that MIL seemed to enjoy having her arm gently stroked does suggest that this is something she might enjoy.
I also completely agree with the previous comments about the fact that you have absolutely nothing with which to reproach yourself regarding MIL'S care. You had her to live in your home out of love and kept her with you for far longer than many of us would have managed. You have fought for her every step of the way and will continue to do so for as long as necessary. You deserve a bloomin medal yer daft wench! (((hugs)))
The weather is cooler today and the forecast is very mixed - we are due temps in the low 20sC but also quite a lot of rain, so I expect the humidity will be high. Nevertheless, I hope everyone has a great bank hol weekend.
Dearest Ann thank you so much for the update. All the layers of meaning and interpretation: I realised how vastly more complex the situation is than I had appreciated. It was a shock even for me, so far away, so removed from this crisis, to read that the discussion today necessarily embraced end of life care too, as a possibility here.
One can only be humbly grateful for the good people there can be in dementia care, and for how they keep on fighting despite what must be soul-numbing bureaucratic circumstances.
I’m thinking of you, your husband, your mother-in-law and your family. I am so pleased and relieved that transfer to a psychiatric unit has been excluded from consideration now.
No need to read on, Ann, but I’m going to reminisce a bit about my mother’s last weeks because the care was similar to what is being proposed for your mother in law, even though my mother did not have dementia. Don’t read it if you’re not in the mood.
My mother was immobilised after a stroke but mentally unaffected. She could talk and read. After three and a half years of complete dependence in a nursing home, she was diagnosed with stomach cancer. (It was a secondary.) The hospital (she’d been taken to Emergency but did not have to be admitted) at once stopped further investigation. She was allowed back to her nursing home straight away and her end of life care was begun there, with the GP looking after her pain medication. No one had any idea how long she would live but in fact she lasted just seven weeks. For the first three of those she was still reading and only for the last four did she become dependent on strong pain relief.
I think she was deeply relieved she did not “have to” go on any longer. She had felt I think that she had to go on living for our father’s sake, whereas now she had a way out, and she took it as fast as she could. The devoted care, in a familiar setting, in her own bed, was all we could have asked.
Belated good morning all. Got up late, immersed in another thread, then went out, just got back!
Ann, agree with everyone else. You have nothing to fret over, AT ALL.
The proposed care does seem pretty thorough, but woebetide the person who rubs my hands, I hate it! Just sooo irritating. One thing in common with your Mum, Slugsta!
There’s been a lot around recently with patients being given drug after drug and then suffering from inter reactions. It’s a bee in my bonnet. However, as GPs get more money for more drugs prescribed, it’s difficult to convince your GP. Personal experience here. I’m hoping for another go at him soon!
Very misty when I got up, which has mostly cleared, just hanging around the horizon. No wind. And we had nowhere near as much rain as was forecast, and no thunder, or none that I heard anyway. Thankful for that!
Sunny intervals for the weekend. That’ll do me!
Have a good rest of the day!
Ann, agree with everyone else. You have nothing to fret over, AT ALL.
The proposed care does seem pretty thorough, but woebetide the person who rubs my hands, I hate it! Just sooo irritating. One thing in common with your Mum, Slugsta!
There’s been a lot around recently with patients being given drug after drug and then suffering from inter reactions. It’s a bee in my bonnet. However, as GPs get more money for more drugs prescribed, it’s difficult to convince your GP. Personal experience here. I’m hoping for another go at him soon!
Very misty when I got up, which has mostly cleared, just hanging around the horizon. No wind. And we had nowhere near as much rain as was forecast, and no thunder, or none that I heard anyway. Thankful for that!
Sunny intervals for the weekend. That’ll do me!
Have a good rest of the day!
Hi. I've not posted but I still drop in read your thread.
I am horrified to read the latest events with your MIL. You must complain about the consultant if only yo protect others.
The main reason I logged in was to say are you sure she is not having TIA in the zoned out phases? We found this with Mum. As she progressed in her journey they happened more often. in the last months of her life she was without most if her medication as she had gone through it and come out the other side.
I wish I could help you as I know just how much this takes out of you.
Love to you all
Me X
I am horrified to read the latest events with your MIL. You must complain about the consultant if only yo protect others.
The main reason I logged in was to say are you sure she is not having TIA in the zoned out phases? We found this with Mum. As she progressed in her journey they happened more often. in the last months of her life she was without most if her medication as she had gone through it and come out the other side.
I wish I could help you as I know just how much this takes out of you.
Love to you all
Me X
Hello all,
It's the possibility of some peace for Mil that I think is the most important , 2jays - and as I said before, you are right - its that I/we need to work towards and focus on now x It was good to read how you, and so many others also felt that the meeting was actually quite positive, because that's how I felt, for a lot of reasons. For example, I found myself feeling incredibly relieved at the thought of the meds going, not just because of the damage that it seems so many have done to her, but also because she is getting increasingly non-compliant about taking them and trying to persuade her/make her take them is causing her a lot of upset, often triggering the melt downs and aggression. Her not having to go through that any more translates as another positive for me, because its one less bit of misery for her. As Red says - its the focus being very firmly on quality for her that is the most positve.
I confess, Canary, that I have spent some time trying to find out more on the good old interweb about 'over medication of anti-psychotic drugs in dementia treatment', 'combination of anti-psychotic drugs with angina medication/medication for COPD', etc, etc - it is, as so many of you have said, flipping impossible. A minefield of scientific studies with words I can't pronounce, much less spell; terms I have never heard of, that I could spend eternity trying to translate into something that I can undertand; link after link to associated studies and references that just leave me cross eyed with confusion. I think I am reasonably intelligent, but it's all so complex that it all may as well have been written in greek as far as I am concerned. Even now, I wouldn't have the time to spend the hours required to untangle all the information and educate myself on what it all means - and it would have been so much harder, impossible even, to find the time and energy needed to try and understand it all while Mil lived here.
Carolyn, I think that Mil too would be deeply relieved at not having to 'go on' like this, if she had the capacity to be aware of her situation. There is a fine line between prolonging life - and prolonging death. Given what Mil has been and at this point still is going through, in her case that line has been crossed. Physically she has deteriorated a lot since Christmas. From what I was told the other day, its since then that there has been an increase in things like the angina and COPD meds, which have been given without considering the quality of the life that they are potentially prolonging. It may be - Mil being exceptionally good at defying expectations - that these drugs will be stopped, and she will still keep chugging on for a long time (one staff has said this, with a grin, adding that she is a 'fighter' and like the 'duracel bunny - she just keeps going'). If she is calmer, if she has some level of contentment, they we will just appreciate that for as long as it lasts. But as its more likely that the health issues will worsen and lead to her dying sooner, I am hugely reassured by her being on this pathways programme and knowing that its all about quality and comfort for her. There are, as you say, a lot of layers - but I'm working through them with OH and feel that we may well be on the right path for her now x
Spamar and Slugsta - I used to do foot, hand and scalp massages for Mil on the rare occasions she would let me - and she loved 'em. So in her case, they would be tried as part of her 'plan' - if she had felt as you two did, they wouldn't feature Nurse L told me several times that its about the 'details that will make a difference to the individual' - so if the pwd gets comfort from hand massages, or the smell of lavender, or from hearing a favourite song or singer, then that is included in the care plan - and detailed notes are kept to ensure that any changes in preference (like a tolerance to music) are noted. (And I am stamping down on the little voice that is saying 'too good to be true' )
Lemony - it's so lovely to see you on here again, Hun - thank you so much for posting xxxxx If it were just one consultant, you bet your boots I'd complain - but it isn't Mil must have seen at least 8 different consultants in just the 12 - 18 months before she was even admitted to hospital. Then the ones in hospital, and now at least another 2 since then. All of them - up to this current consultant - changed, added, withdrew or otherwise 'fiddled' with her meds. You can add her current GP to that mix (and again - I have asked for him to be changed and been assured by Nurses D, L and M that it will be sorted). Trying to work out which consultant(s) prescriptions and changes actually caused the damage is pretty much impossible. I think the best I can do is, when I can, complain about a system that allows this sort of situation to develop.
Mil does have a history of possible TIA's. Thank you - that is definitely something for me to ask about - I don't know what they can do about it, but if it is happening then surely its important that staff are aware of it xxxx
I'm popping in to see Mil today. I forgot to say that when the annoying staff was telling me about Mil's supposed 'fire', Mil's cooking was mentioned and that led on to the concerns about her current lack of appetite. I was asked were there any foods that she used to particularly like when she was 'off colour' and amongst other things I said 'Oh, and home made leek and potato soup' - at which point Mil actually interjected 'Love leek soup'! much to mine and the staffs surprise. So bubbling away on the stove at the moment is a pan of said soup, and I am taking her a flask in. She may not fancy that either when its offered, but its nice to actually do something for her that there is even a slight chance she will enjoy.
The weather here has turned horrible, rain all day yesterday, back to quite chilly and overcast today - and thunder and lightening storms promised for much of tomorrow. Plans to tootle off with my camera have been abandoned, and instead I'm going to give the house a darn good clean - it's long overdue! Best friend is coming for coffee this afternoon, and then I am meeting OH for a swim at about 6pm. At the moment, I'm back to waking between 3 and 4 a.m., so I am hoping for an early night tonight, to try and catch up - the cup final being on (is it the cup final? Something like that, anyway) gives me a good excuse to going to bed vey, very early, which suits me fine.
Again, a million Thank you's for all the words of reassurance and comfort - it may take me some time to listen, but I get there eventually and I appreciate all so much xxxxxxx
It's the possibility of some peace for Mil that I think is the most important , 2jays - and as I said before, you are right - its that I/we need to work towards and focus on now x It was good to read how you, and so many others also felt that the meeting was actually quite positive, because that's how I felt, for a lot of reasons. For example, I found myself feeling incredibly relieved at the thought of the meds going, not just because of the damage that it seems so many have done to her, but also because she is getting increasingly non-compliant about taking them and trying to persuade her/make her take them is causing her a lot of upset, often triggering the melt downs and aggression. Her not having to go through that any more translates as another positive for me, because its one less bit of misery for her. As Red says - its the focus being very firmly on quality for her that is the most positve.
I confess, Canary, that I have spent some time trying to find out more on the good old interweb about 'over medication of anti-psychotic drugs in dementia treatment', 'combination of anti-psychotic drugs with angina medication/medication for COPD', etc, etc - it is, as so many of you have said, flipping impossible. A minefield of scientific studies with words I can't pronounce, much less spell; terms I have never heard of, that I could spend eternity trying to translate into something that I can undertand; link after link to associated studies and references that just leave me cross eyed with confusion. I think I am reasonably intelligent, but it's all so complex that it all may as well have been written in greek as far as I am concerned. Even now, I wouldn't have the time to spend the hours required to untangle all the information and educate myself on what it all means - and it would have been so much harder, impossible even, to find the time and energy needed to try and understand it all while Mil lived here.
Carolyn, I think that Mil too would be deeply relieved at not having to 'go on' like this, if she had the capacity to be aware of her situation. There is a fine line between prolonging life - and prolonging death. Given what Mil has been and at this point still is going through, in her case that line has been crossed. Physically she has deteriorated a lot since Christmas. From what I was told the other day, its since then that there has been an increase in things like the angina and COPD meds, which have been given without considering the quality of the life that they are potentially prolonging. It may be - Mil being exceptionally good at defying expectations - that these drugs will be stopped, and she will still keep chugging on for a long time (one staff has said this, with a grin, adding that she is a 'fighter' and like the 'duracel bunny - she just keeps going'). If she is calmer, if she has some level of contentment, they we will just appreciate that for as long as it lasts. But as its more likely that the health issues will worsen and lead to her dying sooner, I am hugely reassured by her being on this pathways programme and knowing that its all about quality and comfort for her. There are, as you say, a lot of layers - but I'm working through them with OH and feel that we may well be on the right path for her now x
Spamar and Slugsta - I used to do foot, hand and scalp massages for Mil on the rare occasions she would let me - and she loved 'em. So in her case, they would be tried as part of her 'plan' - if she had felt as you two did, they wouldn't feature
Nurse L told me several times that its about the 'details that will make a difference to the individual' - so if the pwd gets comfort from hand massages, or the smell of lavender, or from hearing a favourite song or singer, then that is included in the care plan - and detailed notes are kept to ensure that any changes in preference (like a tolerance to music) are noted. (And I am stamping down on the little voice that is saying 'too good to be true' )Lemony - it's so lovely to see you on here again, Hun - thank you so much for posting xxxxx If it were just one consultant, you bet your boots I'd complain - but it isn't
Mil must have seen at least 8 different consultants in just the 12 - 18 months before she was even admitted to hospital. Then the ones in hospital, and now at least another 2 since then. All of them - up to this current consultant - changed, added, withdrew or otherwise 'fiddled' with her meds. You can add her current GP to that mix (and again - I have asked for him to be changed and been assured by Nurses D, L and M that it will be sorted). Trying to work out which consultant(s) prescriptions and changes actually caused the damage is pretty much impossible. I think the best I can do is, when I can, complain about a system that allows this sort of situation to develop. Mil does have a history of possible TIA's. Thank you - that is definitely something for me to ask about - I don't know what they can do about it, but if it is happening then surely its important that staff are aware of it xxxx
I'm popping in to see Mil today. I forgot to say that when the annoying staff was telling me about Mil's supposed 'fire', Mil's cooking was mentioned and that led on to the concerns about her current lack of appetite. I was asked were there any foods that she used to particularly like when she was 'off colour' and amongst other things I said 'Oh, and home made leek and potato soup' - at which point Mil actually interjected 'Love leek soup'! much to mine and the staffs surprise. So bubbling away on the stove at the moment is a pan of said soup, and I am taking her a flask in. She may not fancy that either when its offered, but its nice to actually do something for her that there is even a slight chance she will enjoy.
The weather here has turned horrible, rain all day yesterday, back to quite chilly and overcast today - and thunder and lightening storms promised for much of tomorrow. Plans to tootle off with my camera have been abandoned, and instead I'm going to give the house a darn good clean - it's long overdue! Best friend is coming for coffee this afternoon, and then I am meeting OH for a swim at about 6pm. At the moment, I'm back to waking between 3 and 4 a.m., so I am hoping for an early night tonight, to try and catch up - the cup final being on (is it the cup final? Something like that, anyway) gives me a good excuse to going to bed vey, very early, which suits me fine.
Again, a million Thank you's for all the words of reassurance and comfort - it may take me some time to listen, but I get there eventually and I appreciate all so much xxxxxxx
