In the last blog, I talked about the The Medication Merry-go-round . About how, over the nearly 3 years Mil lived with us, she had been prescribed a vast array of different medications to try and help combat the extreme sundowning, paranoid delusions and horrible agitation that dementia causes her. About how, during the last 8 – 10 months or so that she was at home for, we had had to deal with a succession of ever-changing locum consultant psychiatrists, all of whom seemed to have very differing opinions about what medication was best, and one of whom changed Mils diagnosis from mixed Alzheimers and Vascular dementia to Lewy Body Dementia (which incidentally resulted in one of the biggest and most complicated medication changes of this period, including the withdrawal of resperidone). I wrote about how, eventually, at the EMH assessment unit in the hospital they had finally stripped back most of the medication, but that now the meds appeared to be increasing once again.
Just a couple of days after I published the last blog, the junior consultant (who has miraculously been around since Mil’s admission!) phoned me. He wanted me and OH to come in and meet Mils new consultant (this one, believe it or not is supposedly permanent!) as some medication changes had been made – and again, the resperidone was mentioned. As I said in the last blog, I have some concerns about resperidone being used. Firstly, its not recccommended for LBD (Lewy Body Dementia) – this type of dementia is often associated with Parkinsons disease, and Mil had developed after several months on this medication, what I had been told were ‘Parkinsonisms’ – Parkinsons disease-like symptoms that included an intermittent unusual and unsteady gait and a very pronounced tremor, particularly in her right hand. Resperidone, I had read and been told by other carers, can exaccerbate these symptoms, perhaps even cause them to develop. I had raised concerns about this when these symptoms first appeared, but a consultant had visited her at home, and assured me that she neither had Parkinsons disease, nor was the resperidone responsible for the symptoms we were seeing develop. However, I had come to have my doubts about his conclusions. Mils mobility had continued to slowly but steadily worsen and I did wonder if we would see any imrpovement once the diagnosis was changed and that medication stopped. Initially, I have to say that whilst her mobility got no worse, it got no better either. Just prior to her being admitted to the EMH ward, and just a few weeks after the resperidone was stopped, Mil had 5 days in respite. When we picked her up, we saw bruising on her forehead, and more worringly, her mobility had noticably deteriorated – obviously, there had been some sort of a fall or stumble, but despite making enquiries several times, we were never able to get to the bottom of how the injury and deterioration had come about. I now suspect that poor Mil had had a TIA or small stroke, that had caused both the injury and the deterioration. Shortly after her admission, the hospital then decided to stop Mils maintenence anti-biotics, and as a result she developed firstly a UTI, then 2 chest infections – and all these also adversely affected her mobility. However since then, with her staying infection free after the anti-biotics were re-introduced and recovering from the possible Tia/Stroke/whatever it was, Mils mobility had improved massively, even the tremor seemed less severe and there had been far fewer falls. So I had really begun to wonder if resperidone hadn’t been the cause of these issues in the first place.
Secondly, resperidone can also exaccerbate incontinence problems. Issues Mil had been having with bowel incontinence seemed to almost disappear very quickly after the resperidone was stopped, and though she still suffered from nightime urinary incontinence, that was also not as bad as it had been – the pull ups were usually wet, but not to the point where the bed was soaked every morning, which had pretty much been the case previously. Since its re-introduction as a prn, I had suddenly found that her washing contained a large number of urine soaked nightclothes – which suggested to me that this issue was again worsening.
And as a final note, the removal of this drug had made absolutely no difference to the behavioural issues. Which suggested to me that it had obviously lost any effectiveness it once had to help moderate Mil’s behaviours.
So when this junior consultant phoned me, I began to raise my concerns about this drug being re-introduced, starting with me pointing out that its not recommended for patients with LBD. And a bomshell was dropped. The new consultant, Dr M, had reviewed Mils notes and decided that Mil did not have LBD. She had been re-diagnosed as having Alzheimers dementia, mixed with Vascular dementia – back to the original diagnosis.
My response was “Oh For Gods sake!”, I’m afraid. Third diagonosis, would it herald yet more misery for poor Mil?
‘Junior’ went on to explain that ‘Different psychiatrists tend to have different opinions’
No shit Sherlock! Over the last few months, believe me, I’d come to realise that myself.
The time and date of this ‘meeting’ was arranged and I hung up the phone feeling totally pissed off. Been here, done that – and how on earth was I supposed to know that this consultants opinion was any more correct than any of the previous ones had turned out to be? How could I make sure of what was best for Mil in terms of treatment, when not even the so-called experts could agree on a diagnosis, let alone on what medication would help her? I knew OH would be in the middle of a run of night shifts at the time of the meeting and wouldn’t be able to attend. Feeling in need of some support to help me express all my concerns at this meeting, I rang our CPN. The change of diagnosis was news to her too. I got the impression that she wasn’t too happy, as she had been either ringing the ward or visiting Mil every week and no one had told her about the re-diagnosis. News to me was that she had been told that the attemps to re-introduce Mil to DC, at the home that we had chosen for her, had been deemed not to have worked because of prn meds being again introduced. Now, when I’d expressed concerns about this aspect previously, I’d been told by the last locum consultant that any prn drugs could be written up as a regularly prescribed dose, with the additional note that they were not to be given if the ‘patient’ appeared sleepy – this would, he said, get round the difficulty of EMI residential homes not being allowed to give prn meds. Despite continuing to mention this worry, especially as several of the ward staff had commented independently that they felt Mil needed Nursing EMI care not just EMI, I had kept getting this response. In addition, after Mil’s first (and as it now turned out, only) visit to the home, I had received a very upbeat phone call from one of the wards’ senior staff telling me how well the visit had gone and the home felt there would be absolutely no problems with them having Mil there as a resident, as soon as there was a vacancy. This latest decision was a complete about face – and one that neither OH nor I had been told about. And it confirmed my growing worry that should Mil go to the EMI home chosen, that there was a good chance that they would not be able to meet her needs and we could well find that we would be asked to find her an alternative EMI nursing home, quite possibly with limited time being allowed to find somewhere suitable.
At the CPN’s suggestion, I tried to contact this new consultant – with such a lot of concers she felt that I needed to speak to him sooner, rather than later. I rang his secretary and explained the situation and how worried I was. She was sympathetic, but explained thast Dr M had only just returned from annual leave, and between that and the Bank Holiday weekend, he may not have chance to phone me before the meeting – which turned out to be exactly the case.
So, I arrived on the ward on the day and was finally called in to meet this new consultant and try to find out what exactly was going to happen now.
(As a side note, although I was there bang on time, I was only called into the meeting after the consultant, ‘junior’, a senior ward nurse and the CPN had spent some time having a private discussion – may not be intentional, but that situation had happened several times previously at meetings, and it does leave you feeling as though decisions may have been made prior to your input which means it also felt as though I was at a distinct disadvantage – everyone but me knew exactly what was on the agenda and how it would be approached. Other than I was hopefully going to be given an explanation for the change in diagnosis, and a chance to express my concerns, I really had no idea if anything else was to be discused. Its quite an intimidating situation)
Maybe just my interpretation, but I felt that the new consultant started off quite defensively. He started by explaining why Orlanzepine was now being stopped – I had previously been told, just a couple of weeks before, that it was being continued as it had ‘anti-depressent qualities’ and that it was felt this would benefit Mil, even though I had said repeatedly that I had never seen any indication that its introduction had made any difference whatsoever to her behaviour. Now, all of a sudden, I was being told that it should not be used for patients with diabetes, as it could cause problems. And this high-lights perfectly one of the recurrent issues we had encountered throughout caring for Mil. We would raise concerns about deteriorations in her behaviour, and consecutive consultants would suggest this or that new med, often waxing lyrically about the potential benefits and how it would help. What they never did was tell us about potential problems or side effects, and we, trusting their ‘expertise’ never thought to question it, assuming that if there were likely to be issues, of course they would warn us. A month after the orlanzepine had been introduced, we mentioned to the prescribing consultant that Mil was again very restless at night, constantly claiming to be ‘starving hungry’ and it was only then we were told that this drug often causes an appetite increase. That would have been, you would have thought, a point when other side effects or possible problems could also have been mentioned to us – but no, that consultant merely reassured us that the benefits would out-weigh this side effect and there was no mention of Mils diabetes potentially being affected. And yes, I could have gone on good old google and researched meds myself – but why would I, when these ‘experts’ were giving us no indication that there was any need for us to do this. Even when I was aware of issues (usually because someone on the TP forums had tipped me off) and I raised them, the consultants were quick to down play any worries and assure us that the benefits were worth any ‘slight’ risks.
I pointed out, of course, that this was the first I had heard of this side effect. That I had in fact several times said that it didn’t seem to benefit Mil anyway (which the CPN confirmed). No apology, no explanation – just onto the next point.
Which was that Dr M ‘believed that somewhere along the way, someone had mentioned the possibility of Mil having LBD to me?‘ Mentioned it? No, I was quick to point out that it hadn’t been merely ‘mentioned’ – that 2 or 3 consultants back (I’ve honestly lost bloody count!) I had been told catagorically that Mil had LBD, not AZ mixed VascD – and that all her medication had been changed as a result.
There was no acknowledgement of my correction, and Dr M went onto say that shortly after Dr G (the consultant who changed the diagnosis to LBD) had come to that conclusion, that a Dr A (and I’m not sure if the name he gave is one I am familiar with or not – it rings vague bells, but I can’t place him) had reviewed all the ‘evidence’ – and decided that Dr G was wrong. And again, I pointed out that this was the first I had heard of this, that no one had told us about this. (I should have also have pointed out that in all the times since then that Mils dementia had been discussed with medical staff, the term LBD was used by both them and us with no correction or mention of a re-diagnosis ever made). Once again, no acknowledgement of what I said, never mind any explanation. He went on to tell me that at the point Mil was admitted, she was on a ‘cocktail’ of a lot of different medication and explained that there was a liklihood that this was actually not helping, and might in fact have been making the situation worse. Which, as I pointed out, I had repeatedly expressed concerns about and was why I pushed for her to be admitted in the first flipping place.
Then he said he had spent a full day, reviewing all of Mil’s notes, familiarising himself with her symptoms, the problems and her medication history – and though in the case of dementia, it was often impossible to say with 100% certainty what the specific type was, he was convinced that all the indications were there to suggest strongly that Mil does not have LBD. That it is Alzheimers mixed with Vascular Dementia.
Dr M went on to say how in accordance with guidelines reguarding the use of anti-psychotic medication with dementia, he was reducing the medication given to Mil down to the lowest possible combinations and doses. That the mixtures she had previously been on would not have helped – and he also said that this could only be done in a hospital setting. I pointed out that actually, I agreed with him. That the reason why I had kicked up such a fuss when the previous consultant had pushed so hard for discharge, without actually changing any of the anti-psychotic drugs, shortly after Mil had been admitted was because I felt strongly that the drugs should be reduced, but only under the care of professionals – again, my comments were not acknowledged.
And then he mentioned resperidone. I explained my concerns and said that I really felt that there was strong evidence of improvement to her mobility now it had been stopped. He told me that he felt that it was the very high dosage of resperidone that Mil had been on that had caused the Parkinsonisms in the first place – and again, I raised the point that I had been assured by a consultant that came out to the house that the resperidone was not responsible (which the CPN confirmed). He went on to repeat his point then added that the dose Mil was now being given as a prn was ‘very small’ and it would not cause or worsen the mobility issues. And that he felt that she was now at the optimum in terms of medication for her condition and presentation – so it was time to consider discharge.
I asked was an EMI still considered the ‘right’ option for Mil, if prn drugs were to continue being used?. He asked the nurse to explain. Very formally, she told me that in their ‘professional opinion’ Mil needed EMI nursing care. Not only the prn drugs, but the fact that Mil has regular periods of intense agitation most afternoons, where she requires one-to-one support for several hours at a time, to try and prevent her getting to the stage where she becomes both verbally and physically aggressive. That an EMI home couldn’t provide that level of support. I was actually relieved at this point – and said so. Yes, we would have preferred it if Mil could have gone to the home of our choice, where she had previouly attended day care, because we knew the staff and they knew her, and it is a lovely place. But as time had gone on, the fear that it wouldn’t be a long term workable solution had grown, along with concern that we would end up having to uproot her again. I had worried that the home we chose wasn’t geared to deal with the level of support that I felt Mil needed, that it would be unfair on the staff there to expect them to cope with her – and unfair on Mil too.
At last a point of agreement. I emphasised how I had found it impossible to distract or calm Mil on the occasion we had brought her home, when she tried to physically attack me, and that I knew at that point that if physical violence was now an issue, that I neither could or would even want to try and cope, and that I didn’t see how the home we had chosen could cope either – the CPN said she felt that I was starting to struggle caring for Mil anyway, before that happened. It annoyed me a little, because I’d felt that actually, I’d managed a lot of difficult situations and issues quite well and I said as much. Both she and Dr G said that yes, as a family, we had done unbelievably well – but that Mil needed specifically trained professionals to provide her care now, that she was beyond what any family could possibly cope with.
A few final comments – Mil’s SW (apparently she now has a named one – I think we have yet to even speak to her, the name given didn’t mean anything to me, though it might be the lady we met briefly at a previous meeting) would be in touch, as it would be her we would liase with to find somewhere for Mil – and that somewhere would very likely be in a different county, sadly, because there are so few places in this county. The CPN said she would get me a list of possible places for us to look at and try. There was a brief mention of something to do with ‘costs’, before the CPN said that actually,any costs would be covered under 117 still and told me that I don’t need to either worry about or do anything about that issue. The nurse said she would go through me exactly what would happen next and explain everything. And then I left.
I walked out not quite knowing how to feel. There was some anger that we had never had been warned about the potential problems with Mil being over-medicated, despite us having raised concerns. And anger that we hadn’t been warned about the side effects of certain meds or told about the diagnostic change, back to AZ and Vasc Dementia, so soon after the change to LBD. Such unaceptable, appallingly bad communication and information sharing.So many times I had raised concerns over Mils medication, and then allowed myself to be reassured that I was being overly-fussy and that there was nothing to worry about, by the ‘expert’ opinions of those that I thought knew what they were talking about – now there was a feeling of validation. I wasn’t being a pain in the arse when I questioned and said I was worried, because all those concerns were justified and I was right to raise them. You can add a bit of the Guilt Monster’s nagging sneaking in here, because I also found myself wondering if I shouldn’t have shouted louder about those worries – but then, hindsight is a wonderful thing, isn’t it?
There was also a strange feeling of relief. This isn’t the outcome we wanted, but in having our concerns about the previous recommendations confirmed as legitimate at least we know where we stand now. It seems unlikely, with a permanent consultant finally in place that there will be any more complete changes and about turns to throw and confuse us. We can now look for somewhere that can meet Mils needs, even if those needs are far more complex than we had hoped for, and be sure we aren’t under-estimating the level of support she needs. And whilst we are under no illusions that it will be easy to find somewhere that isn’t too far away and that we feel will look after Mil as well as we want, once we do find it at least we will know that she will be settled there, with no possibility of future moves or upheavals. We can start to build a relationship with new carers, that will allow them and us to give Mil the best care that is possible. But I can’t help but wonder if we hadn’t had so many conflicting opinions, if there had been some concensus of opinion between the many and different consultants and their ilk, if communication had been better, if our concerns had not been so regularly dismissed, could we not have got to this stage very much sooner – and with a lot less misery for both Mil, and us.