All change – again

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.

 

 

 

 

 

 

 

 

 

The Medication Merry-go-round

I’ve described, in previous blogs, how by the time Mil was admitted to the EMH unit at the local hospital, she was on an almost scary cocktail of medication to try and combat some of the awful symptoms of her dementia.  It started soon after she moved in, when after several weeks of experiencing her intense sundowning, the paranoid delusions and the frequently disturbed nights, we were pathetically grateful when we were offered a medication called Lorazepan, after a visit to the memory clinic,  to be used on a ‘prn’ (basically means taken when needed) basis. We were told that it was often prescribed to help combat the symptoms Mil was experiencing.  First tablet given – and to be honest, we couldn’t get it in her quick enough! – and after a period of 22 hours straight of extreme agitation, where neither Mil nor we had been able to sleep, she crashed and slept for several hours, and she then seemed so much calmer on waking. Sorted, we thought – and Thank God for that. But within 4 or 5 days, we realised that its impact was lessening. The symptoms were back, as bad as ever, and it seemed to be taking longer and longer for the medication to have any effect.

She was scheduled for her annual COPD and diabetic review at her GP practice in Buckley, around this time. Although by now we had realised that she absolutely couldn’t go back to living  by herself, we had decided not to change her GP to one at our practice until after this review.  And this day turned out to be one of the (many) days that she was ‘sundowning’ and extremely agitated, from the moment she woke. At our wits end (yep – already!) we decided to take her anyway. Until now, Mil had been calm and presented incredibly well at all the various appointments we had taken her to  (the ‘Hostess mode’ – detailed in one of my earliest blogs, An Oscar Winning Performance ) and this had left me, especially, frustrated as I often felt that describing the level of Mil’s agitation just didn’t come close to conveying how bad it was in reality. Reconciling how Mil was when she sundowning, with the persona that she was able to present to others as a rule, was hard enough for me to accept – I was often left wondering if social workers, doctors, cpn’s and so on, thought we were exaggerating. So, I was almost glad of this opportunity for someone else, outside of myself and the rest of the family, to see just how awful it could be, for her and us.

Both OH and I went with her. Mil was sweating profusely (always a feature of her agitation and upset) and had dressed herself in the previous days clothes, refusing to either wash or change into something clean for the appointment – to say she looked dishevelled was a major understatement.  She was non-stop jabbering and shouting paranoid accusations, demanding to be allowed to ‘go home’, swearing, flinging abusive insults and threats of having us arrested, claiming that we were lying about her memory problems, that she was perfectly fine and that we were just trying to ‘make people think’ that she was mad. I had to sit in the back seat with her, as at this stage we knew that she would try and exit the car when it was moving, oblivious to any danger.

At the surgery, as soon as the  practice nurse called us through, the level of Mils agitation was immediately obvious to her. Mil refused to let me enter the consulting room with her – I had no right to insist, so OH and I were left sitting in the corridor outside, with no idea what was going on. After several long minutes, the nurse called me in – I had the impression that she had somehow persuaded Mil to agree to me coming into the room – and the nurse asked me a few questions. At the memory clinic, so far the only place where I had had to describe Mils behaviour, they had tactfully separated us from Mil so we could talk openly without upsetting her. So this was my first full-on, excruciatingly awful experience of having to describe Mils ‘issues’ with her sat there, contradicting me, denying everything I said and her getting increasingly angry. I think my discomfort and upset was as apparent as Mils’ fury and irrational attitude, but by now I just felt that I had to get through to ‘someone‘ just how difficult this situation was. The nurse said (pretty tactfully, under the circumstances) that she was worried about ‘how upset’ Mil was. She told me that she felt that Mil ‘really needed’ to see the GP and that Mil had agreed to this. She asked was it OK for us to wait? Of course, I said yes, and we went to sit back in the corridor, whilst the nurse went to speak to the Doctor. She was gone for quite a little while. I wondered what on earth Mil had said about us, 100% certain that it wouldn’t have been anything nice, and there was a nagging worry that despite how obviously disturbed Mil was, that the nurse had perhaps believed some of the outlandish claims I was sure Mil would have made. Mil said repeatedly that the doctor would now ‘put us straight‘, that he would tell us that we had to let her ‘go home‘ and that we were about to find ourselves in ‘big trouble’. 

We were eventually called through. Mil visibly wilted in the face of the GP’s authority, and became quieter. And she stayed pretty quiet when the GP pulled absolutely no punches. The nurse had evidently been shocked by Mil’s behaviour and had painted a pretty clear picture to the GP. He told us in no uncertain terms that no one, absolutely no one, could cope with the behaviour that Mil was displaying. That medical intervention was needed urgently, before we broke down under the strain. He was going to prescribe a medication called ‘resperidone’ for her, as a regular dose, and that combined with the lorazepam, he felt it would help to banish the worst of Mils sundowning symptoms and the agitation. We didn’t argue. The absolute relief that a ‘medical’ someone could see what we were seeing and confirm that it was so very impossible to deal with, was overwhelming. Validation that we were not exaggerating, that it really was ‘that bad’. We went straight from the surgery to the nearest chemist, got the medication and a bottle of sugar free pop, and gave Mil the first tablets in the car, there and then. The Doctors’ response had seemed to get through to Mil – she was as eager to take them as we were to give them.

And the combination of the two meds seemed to help for several months. It didn’t stop the sundowning, or all the paranoia and the delusions that were now becomming a feature – but it toned them down, so they were nowhere close to being as bad as they were in the time before both meds were prescribed.  However, I had now looked up the side effects and contra-indications to the meds, and was feeling incredibly guilty. I discovered that Lorazepam and Resperidone come with the potential to have several serious health impacts, raising the liklihood of strokes, and caution is advised when the patient has existing conditions affecting the lungs or heart (and Mil has both COPD and angina). There was also the possibility that if there was an existing pre-disposition for Parkinsons, that resperidone could cause symptoms to fully develop. It was really scary stuff. Our CPN was brilliant, monitoring Mil’s health and reassuring us – it was a question of balancing out whether the risks were worth it, she said, pointing out that we had been (justifiably) frightened that Mil would have a heart attack, severe asthma attack or a stroke as a result of the extremes of emotions and stress she experienced while sundowning, anyway. That when Mil was in that state, we had seen first-hand that her judgement was so impaired that she frequently put herself at risk – if she got out of the house (which she managed several times in the early days) she would knock on complete strangers doors, try to flag down cars, run into the road, get disorientated and not know where she was which could lead to her getting lost. That she banged on doors and windows when she couldn’t get out, causing skin tears and bad bruising. That nobody, including ourselves, could maintain caring for someone 24/7 when they had to deal with Mil’s smptoms, and that doing nothing about them would lead to us not being able to cope, we would crash and burn – and what would happen to her then? And that even above all that, she was suffering extremes of fear and anger that made her life a misery. So, which was the better alternative? Put like that, we accepted the meds and just hoped that Mil would escape the health implications.

After several months, however, things started to deteriorate. The sundowning intensified again, the delusions just kept increasing and became even more paranoid and the medication didn’t seem to help. Mil had by now started to attend a council run day care, for 3 days a week and they were also having problems, as were the support staff that took Mil out for a couple of hours after ‘day care’ (which despite the title of ‘day care’, was actually only open for 4 hours a day!) . In fact, we gradually realised that the lorazepam, when given as a prn, actually seemed to be making Mil worse – she became more verbally abusive, with the insults and personal comments becomming ever more nasty and vicious after she had had the medication. We spoke to the CPN, who said she had come across this before, where lorazepam could start to actually disinhibit someones behaviour and make it worse. We stopped giving it and eventually spoke to the GP. There had been an occasion a couple of months previously when Mil woke one day in an absolutely dreadful state, banging on the windows from the minute she got up, talking incessently in a rambling, extremely paranoid manner, incredibly upset, frightened and angry in equal measures and the GP had prescribed a 5mg dose of diazepam, followed by a week of a 2mg daily dose. And it had made a huge difference. We asked for diazapam to replace the lorazepam as a prn dose, and this was agreed.

More worringly, as well as the deterioration in behavior, we had started to notice that Mil had developed a pronounced, intermittent tremor in her right hand. And that she was also now frequently displaying an odd way of walking – up on her toes, tiny little steps with her upper body leaning forward (and sometimes to the the side) to the extent that we worried she would topple over. I began to really worry about Parkinsons Disease and spoke to the CPN. She arranged for the consultant to come and visit Mil at home. He was very thorough, and after examining her her told us that no, she didn’t have Parkinsons, and no – it wasn’t down to the respiredone. He said that some dementia sufferers developed what were referred to as ‘Parkinsonisms’ – sympoms that mimicked Parkinsons disease, but were not the disease.  A huge sigh of relief. Except that as the months went on, these symptoms got worse – but  who were we to argue with the ‘expert’?.

Things continued to deteriorate. The support staff were struggling, and we were facing increasing issues with the agency and some of the staff anyway, that made dealing with them difficult.  Day care could no longer cope with her – she continually tried to leave there and as it had a open door policy this put the staff in a difficult position. Legally, technically, they couldn’t prevent her leaving if she wanted too – but persuading her to stay was becoming increasingly difficult. Reluctantly – because both OH and I felt the staff there were brilliant with Mil, and it was a lovely place – we agreed with the CPN that it was time to change, that Mil should now be attending a specific EMI day care, in a secure unit. We visited the recommended unit, situated in an EMI residential home – the staff impressed us, but boy – we were shocked by the level of impairment displayed by the residents and day care patients, it was upsetting to think that Mil had now reached the stage where this was an appropriate setting for her. But once she started attending, it was glaringly obvious that despite our fears that Mil wouldn’t ‘fit in’, she actually wasn’t out of place there – she really did need that level of support at day care now.

A brief honeymoon period, before firstly we encountered Mil’s behaviour again becoming increasingly difficult to manage at home, and then DC (Day Care) started to report that they were also having issues. The diazepam ceased to be effective, as had its predecessor, the lorazepam. And so began several months of repeated visits to see the consultant at the EMH unit – well, I say ‘consultant’ – that should be plural, ‘consultants’. As I’ve written before, at this point, there was no permenent consultant at the hospital – instead, we faced a series of ‘locums’ – most were there for a month or two at the most – I think we saw perhaps 4 or 5 different ‘consultants’ during this time, and this is what put us firmly on the ‘medication merry-go-round’.

The problem with a succession of ‘experts’ is that they all seem to hold very different ‘expert’ opinions. One consultant might favour a particular medication, which the next consultant would disagree with and change. They obviously didn’t know Mil, had only the briefest idea of her past history and made their decisions based on the little we were able to tell them during the often single consultation we had with them – I’m sure they at least skimmed her notes, but am equally sure that is all they did. I provided one consultant with a two pages of A4 typed notes, outlining in detail the issues and our concerns and difficulties, as obviously Mil accompanied us on these appointments, and it continued to feel awful to discus her behaviour whilst she was sat there (though, to be fair, when the CPN could, she would turn up and carry Mil off so we could speak) – however, this particular consultant informed me that he hadn’t read the notes, that he just didn’t have time to do things like that.  It was disheartening and frustrating, to say the least. And also disheartening and frustrating, time after time we found the constant medication changes – which were difficult and complex to the extent that even the chemists we had to deal with frequently got them very wrong , and the burden of sorting the changes fell mainly on my shoulders – made either no difference, or made things worse. Oh, once or twice hopes were raised when there seemed to be an initial improvement – but always, these improvements were short-lived, and Mil’s symptoms returned, often worse than before.  I can’t even remember the order of the changes she went through – donezepil went, memantine came in. Resperidone went and then Mitrazapine, orlanzepine, duloxitine, melotonin and zopiclone all featured, doses changing and meds removed or added at each visit. One ‘consultant’ insisted we try lorazepam again, saying that after the break from it she had had, she would be fine – she wasn’t! It was like painting ‘go faster’ stripes on her . It made her worse. Another consultant completely changed her diagnosis to lewy body dementia (rather than the mixed Alzheimers/vascular dementia, which was the original diagnosis), as well as changing her meds. He stopped the resperidone, saying that it was responsible for her developing Parkinsons disease – cue the guilt monster, battering us senseless for not arguing with the consultant who had insited that the resperidone wasn’t doing any harm at all. Another consultant removed the zopiclone and let us in for a month where Mil slept for no more than 4 hours at a time – followed by wakeful periods of several hours, starting around 1a.m., where she managed to wake the whole house up, banging about in her room and and walking into bedrooms, looking for her late husband, her parents, her ‘baby’ or demanding that we let her out of the house so she could go to work. Diazepam – which we repeatedly told them had long since ceased to effective – was again introduced, at varying doses and to no effect. As each new med was tried, the possible benefits were sold strongly to us – but only when some meds were removed were we told by the consultant of the moment that actually ‘this’ or ‘that’ medication could make the delusions worse, or could cause insomnia. After respiredone went, we discovered that the bowel incontinence which had become a regular issue suddenly improved – and the continence clinic nurse asked us didn’t we know that resperidone was notoriuos for increasing incontinence issues? Had we not been told? We lived with a month of Mil becoming totally obsessed with eating, with her waking throughout the night and demanding food – only to be told that oh, yes – Orlanzepine can cause a huge appetite increase.

The appointments invariably upset Mil – any change to her routine, even the smallest thing, had the power of cause several days of increased distress.  There was never any improvement that lasted more than a week. I was constantly worried about the side effects and the impact on her health. Further stressed by increasing reports from DC that they were also struggling and scared she would lose her place there if she got much worse. And  stressed even more by having to take the responsibility for sorting her medication, overseeing the incresed and decreased dosages, the introductions of new meds and withdrawal of others.

So why did we persist? Because it was hard not to hope that there must be something that could and would help her – and us. Dealing with days mostly filled with paranoid beliefs and frightening delusions was exhausting. Watching Mil exist in a world where she spent the majority of her time either terrified, or furiously angry, was heartbreaking. We were getting to the stage where we seriously began to doubt we could sustain caring for her without cracking up ourselves. I’d watched endless Teepa Snow videos on distraction techniques and read realms on compassionate communication, I’d asked for and listened to advice from other carers, I’d asked the CPN and the successive consultants if there was anything else we could do to combat these horrendous symptoms  – and Mil was incredibly resistent to anything and everything I tried. And I’d realised that despite always having previously felt that using excessive medication to calm someone and make them easier to handle was absolutely wrong, actually, there were worst things. If medication was the answer to her constant, daily distress and our increasing inability to feel we could cope – then, hey – bring on the meds. Anything seemed preferable to the torment she was experiencing. And surely, in this day and age, something, somewhere had been developed that would help?

But then I had also began to wonder if perhaps the meds might actually be making things worse? Which is why, even as we continued to see this long line of locum consultants, I started to ask about Mil being admitted to hospital, to have her medication properly assessed – to have it stripped away, so that medically qualified staff could work out what was and wasn’t helping.

I’ve already detailed, in other blogs, the struggle and the long wait we had to finally get her admitted for this assessment. And how – once she was admitted – it felt like we had to do battle to get the then consultant to actually do what he had agreed to do, withdraw the meds and try to find something that worked. And how – finally – most of the meds were withdrawn. Initially, there seemed to be an improvement. Sundowning seemed to be restricted to just evenings, finally she seemed to sleeping well and we started to feel that she was more open to distraction, which helped to calm her. At this point, she was only taking orlanzepine, which was being used as a mild anti-depressent, we were told.

But as has happened before, slowly but surely, the behaviours have now started to increase – and once again, the medication is creeping back in. When we made the failed attempt to bring her home, Mil was having the orlanzepine – and a medication called Clomethiazole, prescribe a couple of weeks before. There was some confusion when this was first prescribed – I was told on the phone it was being given as a prn dose ‘to good effect’, OH was told when he visited a couple of days later that it was to be given as a regular dose, then we were told again at a later date that no, it was to be given as a prn. It was originally used, a long time ago, to combat the symptoms of alcohol withdrawal, but had recently proved to have been ‘effective’ in the treatment of dementia symptoms such as agitation, we were told. In a meeting just before we tried to bring Mil home, the consultant decided to prescribe it as a regular dose, as otherwise, DC (being in an EMI home) couldn’t use it when needed (only Nursing unit/nursing EMI  units can give prn medication). Then, a few days after Mil returned to the EMH unit, we were told that memantine was now being given again, as Mil needed it as she was becomming agitated. Which I queried, because I’d been told previously that memantine can sometimes increase, rather than reduce, delusions and that they thought that it had been responsible for a lot of Mil’s ‘issues’. But  it was  ‘all change’ again and the opinion now was that it had been helping her. Hard to keep up with, isn’t it?

The latest was a phone call a couple of weeks ago telling us that Mil had been experiencing spells of extreme agitation in the afternoon, had become verbally abusive to staff, had thrown her walking frame at them – and they were now prescribing resperidone once again, this time as a prn. I expressed immediate concern. What about the Parkinsons? Resperidone makes it worse? I was told that -and once again, a change of opinion – she doesn’t have Parkinsons, she merely has ‘Parkinsonisms’; That as a prn dose, resperidone won’t cause any problems – and anyway – they have to have something to give her when she gets that agitated!

3 days ago, we visited and were greeted with the news that she was extremey agitated (and she was – the gun men were featuring large in a delusion and she was so frightened) and that they had given her resperidone – but that so far, it didn’t seem to have had any effect’

I’m wondering what next? Because she is now on memantine, orlanzepam, clomethiazole and  resperidone. Nearly as long a list of anti-psychotic and sedative type drugs as she was on when first admitted.  I’ve raised this issue at the hospital and been told that some people who have dementia do present in this fashion. Its unusual, but not unheard of for some patients to develop the ability to adapt and almost become immune to any beneficial effects of drugs like these, in an incredibly short space of time. And the answer might be that Mil will have to be constantly reviewed and her drug regime changed every couple of months, for the rest of her life. Its a horrifying prospect. But there seems to be no other other answer.

And it also scares me because if she has to have constantly changing meds, if they are still giving some of those meds on a prn basis, what impact will that have on her being ‘suitable’ for a EMI placement, in the home we would prefer her to go to? They cannot give PRN drugs. I am really worried that this aspect of the illness is going to mean that Mil will eventually have to go into EMI nursing care – and we will be faced with the near impossible struggle to find her somewhere locally , when there are virtually no such placements available in this area.

The medication merry-go-round is a total nightmare, but at present, there seems to be no way of getting Mil off this particular ride.

 

 

Visiting Time

Mil remains on the elderly mental health assessment unit at the hospital, whilst we wait for a place to become vacant at the home we have chosen for her. We try and visit as often as we can, usually 4 to 5 days a week. I think that’s more for us than for Mil. She never remembers when she last saw us and we have been told she forgets that we have been, sometimes within seconds of us leaving. In fact, on a couple of occasions, I’ve gone in and during the visit, she has nipped to the loo. When she has come out, she has greeted me in surprise, having completely forgotten that I was there in the brief time it took for her to use the toilet.

We never know what frame of mind we will find her in. Or what her reality of the moment will be. At yesterdays’ visit she mainly seemed to think she was at school. She told me that Sean and I were going to be proud of her, because the teachers have told her that she is going to get a good report this time. She indicated one nurse in particular with the comment that ‘That teacher says I’ve been really good”.   Wondering where exactly she was on her timeline, I casually mentioned that I thought she had left school. No, she assured me – she was only 17. Mind you, her Mum had told her that she will be leaving soon, as its ‘past time’ she got a job. The she added that she thought she was 17, anyway – because she remembered her Mum telling her that her birthday is on April 21st (it isn’t – she was over a month out)  and it will soon be April, won’t it? .  I simply went along with her, not correcting, not disagreeing. Its very easy to do this nowadays. Primarily because I’m not constantly worried that her confabulated reality will suddenly become a paranoid reality and she will get cross with me. At home, spending several hours at a time with me, when the paranoia or fear or anger hit, I was the natural target – in the hospital, with visits not lasting several hours, she doesn’t tend to blame all her imaginary ills on me. She seems to somehow know that I am not there all the time, so I can’t be responsible for whatever upset (sudden or otherwise) that she might experience. And it’s also easier to simply go with the flow when I haven’t already had to spend several hours listening to her. Which sounds so harsh and cruel – but its true.  Listening to fabrication after fabrication, trying to maintain the mental agility necessary to be able to fathom quickly what Mil’s reality is at any given time (when it can change from minute to minute) so you don’t say the wrong thing and cause offense, trying to respond naturally to what you know is utter invention, hearing nothing but ‘nonsense’ (and you do end up applying that term to it) for hours and hours and eventually feeling that you would give your right arm for just 10 minutes of sensible conversation – it is wearing and frustrating beyond belief. You find yourself less able to ‘go along with it’ as the time goes on, and almost without thinking, you will find yourself blurting out something that questions what she is saying or contradicts what she believes. But its pretty easy to sustain patience and give natural responses when its only for an hour or so.  And I appreciate being able to do that, because I’m pretty damn sure that when she was at home, and I struggled to keep up with her rich and varied fantasy life, that she must have been aware of my frustrations, through my tone or body language or inadvertant facial expressions, and found them annoying, upsetting, doubting and even rude at times. It has to be nicer for her to spend time with me, when she isn’t left feeling that perhaps I may be questioning what she is saying, or that I’m not interested as she feels I should be.

Mil believing that she was still in school was pleasanter than a visit last week when she was certain that there was a war going on. She wasn’t over-the-top agitated, but just a bit concerned about how her son was coping with the war (as she also believed that he was in the army) and about how her parents were faring. She came out with a tale about she had been ‘chased’ across the field by a bouncing bomb (!) and was so fixated that she managed to divert every change of subject that I introduced back around to this blessed ‘war’ she was so certain we were in the thick of.  I complimented her on her top, asking where and when she had bought it ? (and yes, I knew full well that it was a top I had bought for her – but I also knew that she wouldn’t remember that) . I had hoped to send her off on a tale about a shopping trip or perhaps about how she got the top for Christmas – but no. Very neatly, she returned to the ‘war’ obsession by responding with “This old thing ?  I bought it ages ago – you can’t buy nice things now, not with this war being on!”.  In a similar manner, asking her what she had had for lunch brought forth the information that it wasn’t anything nice – “you can’t get much nice food now, not with the rationing because of the war”.  And it was the same with every diversion I tried – Mil turned it back round to this bloody ‘war’, and in the end I gave up, though I was worried that at some point the topic would start to seriously upset her. I actually spent some time puzzling over where this ‘obsession’ sprang from, once I’d left the hospital. Mil was perhaps 4 when WWII ended , so it wasn’t based on actual experience of  a ‘world war’ – I can only assume that she was recalling things she had heard or read about in the past, and as she often does, had built the information into a reality for herself.

The ‘war’ obsession was a one off, and I have no idea where she actually thought she was – because she never realises that she is a patient,  in hospital.  Usually, she believes that she is in school, or in a holiday camp, occasionally in a B&B or even a pub. Sometimes she thinks she is in work, sometimes she thinks she is ‘in this place’ for an appointment. Once or twice she has realised she is in a hospital – but never because she is a patient there, its usually because she believes she is visiting someone.  She may think that the building she believes she is in, is located in Wales, or England or Ireland, often in very specific places like Buckley, or Runcorn or Drogheda. Several times, especially when we have visited with youngest daughter, and have had to use the family room (youngest being 15, she is not allowed on the actual ward), Mil has surprisingly been convinced that we are visiting her in prison. Actually, I can sort of understand that one – the ‘family room’ is rather cell like! It doesn’t upset Mil, however  – her attitude is that  she believes she has been in jail for a while and is used to it. She is rarely able to tell you what she thinks she has been locked up for, however – the usual rsponse is that she doesn’t know – but it must have been “something bad because they don’t lock you up for nothing!”

We also get a variety of other fantastic tales of what she has been doing or whats been happening. She will tell us in great detail about a trip out for a meal. Or about how she called at our house last night but we must have been out. How she ran into ‘that woman you know, Susan’ and create a story about a conversation or event involving ‘that woman‘ . She’ll tell us about how she had driven to the shops that morning (she has never been able to drive, but often believes that she can, these days, for some odd reason) or describe how her schools sports day has gone or tell us about how she had a great time at the dance last night. We tend to get more of the ‘fairy tale’ variety of confabulations – I think I’ve mentioned the story of how her (long deceased) pet cat visited her, bringing a present of diamonds?  She’s also told me about how she has been learning the trapeeze and at one point, talked about a pet horse that sleeps at the foot of her bed. Sometimes she will chat about the other patients and staff, pass comment on them, and with the patients especially, its clear that she regards herself as being ‘different’ than they are – her lack of empathy is increasing, and she has absolutely no awareness, as she comments loudly and rudely about them, how bizarre her own behaviour and conversation can be.

Its not unusual for Mil, after we have been there for about 30 minutes or so, to start asking  if it isn’t time for us to go yet? To start fretting, just a little, about us missing our bus or being ‘late back’ to wherever she thinks we have to be. We’ve learnt to take this as a cue to leave, even if we have been planning to stay longer. It seems to be a signal from her that she is starting to struggle with the interaction – the ‘hostess mode’ which is what I think she reverts to when we visit, even when she is on reasonable form, is increasingly hard for her to maintain and I think it mentally exhausts her.  Subconciously, I believe she recognises when she has had enough. We don’t take it personally. Keeping things easy and calm for her has to be the priority.

However, irrespective of where she thinks she is or what she thinks she has been up to, as long as she is accepting of whatever it is she believes, the visits are actually pretty easy.  But sadly, not all visits are like that. The sundowning, the agitation and the paranoia are all still features – most days, she still suffers from periods where she is in those particular mental states, and though its more likely that they will strike in the early evening time, as before her admission to hospital they can also still hit her at other times.

If we arrive, and Mil is stood at the doors that lead into the actual ward, its an instant ‘Uh-oh’ feeling. Its almost certain that she is trying to leave, usually to ‘go home’, of course. If we walk in, and she greets us with a cry of ‘Oh – Thank God you’re here!” or tears, we know its going to be a difficult visit. Sometimes she launches into telling us how she is being kept prisoner, and the visit is peppered with references to paranoid beliefes, where she points out individuals (Patients and staff) as being ‘nasty‘ or ‘back stabbing‘ or how ‘she is the bitch that talks behind my back‘, ‘he hates me‘, ‘that man has thumped me‘, ‘that woman over there has been stealing my clothes‘. Several times she has pointed out a bruise on her arm and informed me that the mark was from where ‘that bitch puts the poison into me’.(She has made this claim when she has been quite calm too – I suspect that the not-infrequent blood tests that she has had is mainly responsible for this repeated comment) .  We’ve learned to resist Mil’s suggestions that we ‘go somewhere quiet, to talk‘ when she seems agitated – because if we allow her to lead us away from the communal area, then when she thinks she can’t be overheard, the paranoid tales are likely to grow and worsen with every sentence she utters and she becomes more and more upset. Or she might want to ‘plot’ her escape in privacy, and fully expects us to go along with it and help – dangerous ground, as the chance of her becoming really upset when we won’t go and ‘ask him for the key to the door – he’ll give it to you’ , is very likely. She told her son and granddaughter a week or so ago, that she was going to get ‘cinema tickets’, because if she could show ‘them’ that she had tickets for a show, then they couldn’t refuse to let her out. Neither of them pointed out that she would have to leave to go get the tickets in the first place or even ask why having bought the tickets, she would then return in order to persuade them to let her out – no point, that sort of logic and reasoning is beyond her.

Even sitting in the communal area, visits when she is like this are peppered with comments like ‘Right – come on. Time we were going” , “What time is it? That late ?  We’d better move or we’ll miss the bus home!”, “Come on – we need to get home for tea”, “lets go now – you can give me a lift home”. We can try to distract, we fall back time and again on the tale that she is staying in hospital whilst they ‘sort out her tablets’ . She may question it, she may tell you that her meds have been sorted, she may tell you that the Doctor has already said she can go ‘now’ – or she may accept it, for all of a minute before you get another comment about it being time to leave. The visit turns into one long loop of repeated references to her leaving and going home. And sometimes it ends with her begging you to “get me out of here, please, please, take me home, please. Oh come on – please take me out of here, I can’t stand it, please!”,   and she is shaking and crying and so distressed that it breaks your heart. She tells you that she can’t stay ‘here‘, complains that the people are ‘all mental here, they are not right in the head‘ that she will ‘go mad herself‘ if we don’t get her out of there. Visits like these necessitate us relying on the staff to distract her , whilst we sneak off to be allowed out by another staff. We can hear her calling after us or catch a glimpse of her trying to follow us. We dare not respond, we can’t give an inch – we just have to get out quickly and for once be grateful that her memory is so bad, that within a few minutes, she will forget that we were even there or that we have (in her head) abandoned her.

When we leave, after a visit like that, its with a huge sense of relief. And amazement, because I have absolutely no idea how any of us dealt with that for the hours and days and weeks and months and years that Mil lived with us. Now even after just 30 minutes, I leave feeling stressed and upset, often with my head spinning and sometimes even close to tears myself. I’m already very aware of the impact that the last 3 years has had on me, physically, emotionally and mentally. The effects are still being felt, believe me.  Its got to have had an impact on the rest of the family too.  What further long term repercussions would have occured had we somehow managed to keep on? It doesn’t bear thinking about.

After visits where we see the full extent of the sheer hell of dementia, I’m left feeling that despite the not infrequent mutterings from the guilt monster, despite wishing it could have been different, in reality it really was time for us to stop – for all our sakes.

 

Coming home . . .or not?

 

(This is a long one – apologies in advance)

Mil had now been in hospital, on the assessment unit, since April.  As detailed in Let down . . . again! , we had quite a battle for the first few weeks after she was admitted.

After the battles, it felt as though at last, the hospital started to ‘work’ with us. Slowly but surely, all the medication prescribed for the dementia related issues, was withdrawn, the last to go being memantine. She remained on one drug that has mild anti-depressent qualitites, but as Mil had taken anti-depressents more or less continuously since her husband had passed away 20 years ago, that made sense to us.  A new PRN medication was introduced, which the hospital told us seemed to have a beneficial effect, although it could take an hour or so for it to have an impact.

The hospital reported that – most importantly – there was no deterioration in terms of behaviour. So it appeared that the drugs, however good the intentions, whatever reason they were prescribed for, had actually not been helping much at all, probably because as the illness gets worse, the behavioural symptoms and needs can change. However, there is no way of knowing this until the medication is actually stopped and Mil was on such a long list of this type of drugs, that admission to the assessment unit was really the only way to have them withdrawn safely, where the impact could be monitored by medically qualified and experienced staff.  Most of these drugs carry health risks, particularly for the elderly who are likely to have other physical ailments (such as the angina and diabetes Mil suffers from anyway) so, if nothing else, removal of these meds would significantly reduce these risks for her. Its always a balancing act with that type of medication. At the time they were prescribed, it was felt (by us and the consultants) that ‘on balanace’, the risks were out-weighed by the potential to improve her quality of life. Unfortunately, its incredibly difficult, with an illness that progresses at no predicatable rate and with symptoms and needs that vary so massively from person to person, to be able to judge when that balance changes.

So the question now, was had the behaviour improved?  Was Mil less agitated, less prone to severe paranoid delusions, to the dreadful anger and heart-breaking fear?  Because reducing these horrendous symptoms, so we could sustain caring for her at home, was the main and most important point of this whole episode.

On the surface, there actually seemed to be. The hospital staff reported that she tended to be ‘a bit cross’ first thing in the morning (she has never been a morning person, to be fair!) and that there was still regular sundowning from around tea time. However, even without sleeping medication, there were now no disturbed nights and most of the time, although still highly delusional, she was ‘fine’ and ‘manageable’.  Early morning grumps and sundowning restricted to evenings only was a massive improvement to the almost constant upset she was experiencing for just about every waking moment previously.

We had deliberately varied the times of our visits, trying to see for ourselves how she was at different times of the day. There was absolutely no doubt that on the whole, she seemed far more settled. It had become so much easier just to ‘go along’ with her delusions – the sudden mood changes that previously had us all walking on eggshells whenever you communicated with her before seemed to have gone. Even if we cocked up and inadvertantly said something that jarred with whatever false memory/delusion she was talking about, she wasn’t getting angry with us.  The insults and abuse she used to fling at me, in particular, vanished. She actually became affectionate with me again, and I could risk joking with her without worrying that she was going to take offence.

However, we were still seeing odd flashes of paranoia, mostly at evening visits, but sometimes even if we went in the morning.  She would suddenly point out a particular patient or staff and make accusations – “She’s the bitch who puts poison in me”, “Don’t turn your back on him – he keeps thumping me”, “He takes drugs, be careful of him – he can turn nasty”, “They make me do all the work here”, “He’s that man who knocked me down and kicked me” , “I’m sick of them all talking about me” – that sort of thing. But, she was less resistent to distraction, and we could usually reassure her and talk her down.

There were still comments and information given to us by staff that indicated that on occasion at least, some of the old problems were still happening, which we noted and tried to keep in mind. It turnned out that her ‘hobby’ of calling the police every time she was able to get near a phone was still in evidence – she had twice managed to phone them whilst on the ward. And when a member of staff caught her, and asked her who she was talking too, on one occasion, Mil apparently looked very guilty for a split second, then with a smile informed the staff that ‘It’s all right love – I’m just talking to the post offioce to see if my money has gone in!”. So obviously she could still be incredibly crafty too. OH and I were doubled over laughing when we were told about this incident – but later, we had to acknowledge that when we had had to deal with similar incidents first hand, it had definitely not been funny at all.

Overall it seemed that we would soon get Mil back home, and that whilst we were under no illusions about how hard it would still be to care for her with dementia, we hoped it would still be easier than it had previously been.

But, the hospital  advised caution.  Firstly they pointed out that although they were managing Mil and her needs, caring for her in a hospital/intitutional setting, where there were numerous staff to share the load of distracting her, entertaining her and generally caring for her, was vastly different from a ‘domestic’ setting, where one person would be performing nearly all the care tasks and would be solo with her for several hours at a stretch. With just one person to focus on it would be easier for Mil to ‘fixate’ any and all her paranoid beliefs on that ‘just one person’, which could, they felt, have been part of the issue with her behaviour before.

They felt that her environment could be playing a huge part in the improvement. That she had ‘adapted’ to the routines of an institutional setting, and that she was ‘better’ not just because she had adapted, but because those routines, with none of the unpredictable and changing variables that are just the ‘norm’ in a regular home, were easier for her confused mind to cope with.

They also pointed out that the ‘good’ periods she was experiencing throughout the day would correspond with the time she was in DC (day care) – and that the early mornings and evenings when she could be difficult would always fall on ‘our watch’.

It was also emphasised that a lot of the time, Mil was extremely mobile. That she had a need to be ‘on the go’, which is quite common in dementia patients – and that in an institutional setting, there would invariably be more space, a larger area, to accomodate this frequent need to be moving. In a normal home, there just isn’t that amount of space and the restrictions this could impose on her could have a very detrimental effect on her.

And even without the sort of issues that we had faced before, even if the improvements continued at home, they still felt that her overall presentation was so difficult that, for our sakes, they continued to strongly reccommend that Mil really should be in residential care. And the consultant added that as the improvements were, he felt, down to a residential, institutionalised environment rather than medication changes, then he was sure that an EMI home would be sufficient to meet her needs, that it was no longer felt that an EMI Nursing home would be necessary.  Prior to this, we had been told that she would need EMI Nursing, and this had been a huge, seemingly insurmountable barrier to us ever seriously considering residential care. Because EMI nursing residential places are scarcer than hens teeth, these days. There are only private care homes now in this area. The L.A. (in their wisdom) have closed all the ones they used to run, and the private homes tend not to offer EMI Nursing places as they are not a ‘cost effective’ service to offer – in other words, private homes don’t make a profit on providing that level of care. So residential care for Mil would probably have meant us having to accept her moving out of the area, perhaps to somewhere a huge distance away from us. And to us, that was a totally unacceptable scenario. This new pronouncement by the consultant effectively removed this barrier, and whilst we still wanted to have Mil home, at least now we felt that should that prove to be impossible, at least we wouldn’t be faced with her having to be placed miles and miles away from us.

We were also told that because Mil had been placed under a section 3, that any future care costs would be met by the NHS, under ‘117 funding’. We had no idea what this was, but did look it up afterwards. Basically, this is legislation that means that if anyone has on going care needs, that have necessitated them being placed under a section 3, then the NHS pays for all care. It’s not means tested, it doesn’t matter how much she has in savings – unless she gets ‘better’ (which simply cannot happen with dementia, sadly) she won’t have to pay anything. This also had an impact. Mil is self funding, after selling her house – however the high cost of care would mean that all that money would be gone in around 15 to 18 months, at which point the Local Authority would have to pick up and pay the bills. And what then? Well, according to first hand accounts that we’d read, its becoming increasingly the case that once a pwd’s own money runs out, various L.A.’s, when faced with the bills, have demanded that the person is moved to a different home – if its cheaper. Doesn’t matter if the pwd is settled, doesn’t matter if the family are happy with the current home and concerned that they feel the cheaper home doesn’t meet the needs of the pwd as well as the current home, or if they feel that the ‘cheaper’ home doesn’t have the same standards as the current home. All the L.A. have to do is insist that the new home offers the same care, but cheaper .  Its all about the money, so choice and preferences don’t come into it. It would leave the family having to fight the L.A., with the onus on the family to ‘prove’ the move would be detrimental – and they may not win. And although as far as we knew, in this exact area this hadn’t been a big problem for families, you have to add a big , fat ‘YET’ as a rider to that statement, because once one Local Authority, anywhere in the country starts to implement that sort of action, it spreads pretty quickly. What this funding would do, if we had to go down the care home route, would give a measure of security to Mil, that we had felt wouldn’t be there once her own money ran out. Prior to the consultant telling us, we had no knowledge about this before – the existence of this ‘117 funding’ seems to be a remarkably well kept secret!

So, as we approached the discharge meeting several weeks ago, we had a lot to think about.  There were – it felt  – a hell of a lot of reasons and support for agreeing to residential care. We ourselves added in considerations like would I be able to cope with Mils inevitably increasing need for physical support, when I have back and joint problems? And even if Mil was much less agitated, could we accept that bringing her home would mean continuing with a hugely restricted lifestyle for us, with the on-going battle to get respite breaks when we needed them .  We had to at least consider that the hospital were right about what was actually best for Mil, that she might be happier in a routine orientated enironment. We also had to be brutally honest and acknowledge that once the hospital ‘got on board’ with us, and we were able to feel that Mil’s interests were being put first,  combined with (despite the dire warnings) no further infections and no serious falls, we had experienced  a period of 2 – 3 weeks where we were able to stop and take stock – and there was no doubt that stress levels had reduced, there was far less tension at home and, yep – we were happier.

But, we also had to think about the more positive and potential ‘what if’s?’ and possibilities. Yes, it would still be hard work, but if the improvements continued once she was home, if she was more settled, it might actually not be as stressful. It might be that being at home could actually turn out to be the better environment for Mil. And being at ‘home’, not going into a care home, had been what Mil wanted. Pre-diagnosis, she had made that very clear and it had long been accepted that should she ever be unable to live independently, that we would care for her. We had promised. And she had been so good to us for so many years – caring for her was grateful ‘pay back’ for that – we didn’t feel obliged, we just felt it was the right thing to do.

And if we didn’t try, at least one more time, we would have to live with wondering if we had really made the right choice. Not to try was to hand the guilt monster a big fat club to beat us with.

So with the knowledge that this was really the ‘last chance saloon’, and against the advice of the professionals (though, to be fair, they understood why we had to do it) it was arranged that Mil would come home for a two week trial period.  DC would start again on the next day, and for that 2 weeks, her bed would be held for her in the assessment EMH unit at the hospital. If during that two weeks, we hit major problems, she would be re-admitted straight away. After that 2 weeks, they couldn’t hold the bed – however, if the need arose, they would find her a bed as soon as they could, she would stay there until a residential EMI place was found and that the care would, no matter if and when it happened, be fully funded under the 117 legislation.

And call me cynical, but I requested that all that was put in writing!

Between the meeting on the Wednesday and her leaving on the Monday, we continued to visit most days. There was a slight ‘niggle’ in that no matter what time of day we went, Mil’s paranoia was a little more apparent than it had been, and she was also more ‘down in the dumps’ than we had seen for a while. However, we put this down to her quite possibly being a little unsettled and excited about coming home. Not that she was able to remember that she had been told that this was happening, but as I have said before – whilst facts disappear almost instantly with dementia, emotions tend to linger and can cause someone to feel apprehensive/excited/happy/unhappy/or whatever, without them having a clue as to the reason why.

Then on the Friday evening – the one day that we hadn’t planned to visit – the hospital rang. Mil was extremely agitated, and the prn hadn’t helped. She was demanding to be allowed to leave and was being very verbally abusive towards staff. Could I speak to her and see if I could help calm her down? Uh-oh!  I tried, but Mil was bizarrely convinced that she was in a pub, in Buckly, that she was being forced to drink whisky, not allowed to leave and she was furious. I tried and tried to reassure her that she was in hospital, that she was safe – not a flipping chance. No, she insisted, ‘those people’ were not nursing staff – they were just ‘Jumped up little *******’s’.  I spoke to the nurse and we agreed that if the extra PRN dose of meds (about to be given) didn’t help, I would come in and see if that worked. I phoned back after a suitable interval, and though the nurse said that they thought she might be a bit better, she really didn’t seem to sure about that, so in we went. Mil did calm down once we arrived and I was able to talk her into a cool sponge down and to change her very sweaty top – but, as you can imagine, this gave us pause for thought. However, when we arrived, it seemed like the vast majority of the patients were extremely agitated too, far more so then we had previously ever seen – and we felt that the general unrest and upset might well have ben responsible for Mil’s severe bout of agitation. We told ourselves it would be fine.

So, The ‘Mil’s coming home day’ dawned. It coincided with youngest daughter being away overnight on a school trip, which we thought was possibly a good thing – we wanted the home environment as quiet as it could be, to give Mil a calm place to re-settle back into. We arranged to pick Mil up at 11, the plan being to take her to a quiet little pub-restaurant, that she was pretty familiar with, have lunch out as a treat and to create a bridge between leaving one place and going to another. I had ‘primped’ up Mil’s room, and had the makings of one of her favourite meals on the go for tea-time (cottage pie) and had stocked up again on some of her favourite foods.  And the last thing I did before leaving with OH, to go and get her, was to ‘Mil-proof’ the house. I locked bedroom doors to stop her wandering into others’ rooms, I made sure that the kitchen barrier was to hand, I made sure that there was nothing lying around that could cause potential for hazards or trouble, I put away all personal toiletries in the bathroom so that ‘things’ couldn’t be appropriated. We had also spent the day before on a day out at the zoo – because although we skimmed over the reason, we all knew that days out like that would now be far fewer once Mil was home.  And I would absolutely be lying through my teeth if I didn’t admit that doing all that left me with a sinking feeling, a sharp reminder of the restrictions we were now once again going to be imposing on ourselves.

But, despite the misgivings, we were hopeful. So off we went to pick Mil up from the EMH unit – and she was so, so happy to see us and to be reminded (again) that she was coming home. Of course, she was a little confused as to where home was, but again, hopes raised when she accepted quite happily a gentle correction and reminder that she now lived with us, and no, she wasn’t going back ‘home to Limerick’.

We collected her things, stowed them and Mil in the car and with staff telling us over and over that we must call them if there were any problems, no matter what the time, day or night, we waved goodbye and headed off for lunch. Which Mil enjoyed, her favourite fish and chips. But although she was mostly OK, there were a couple of ‘uh-oh’ moments. We had the salt loop, where she tried to add copious amounts of salt to her food, over and over and over – and OH got a killer look when he eventually removed the salt with a reminder that so much wasn’t good for her. And then when I took her to the loo, and had to insist that she wash her hands, there was another glare, with a flash of real anger from her that took me right back to pre-EMH unit days, when looks like that signalled a potential massive temper outburst. But she seemed to calm quickly, and just as quickly, OH and I brushed our concerns aside.

Back home for just after 1pm, I quickly put the case and bags out of sight (intending to unpack the next day when she was at DC) made her a cuppa, and OH found her a film which he settled down to watch with her, giving me chance to sort her meds. I was surprised to find changes to her inhalers, that we hadn’t been told about and also that she was on iron tablets again – she is prone to anaemia, but I had managed to eventually control it just with an iron rich diet, prior to the hospital stay, as the tablets caused bad constipation – which like infection, increased the agitated behaviours. A quick call to the ward, an assurance that these tablets would not cause her any problems and a mental note made to increase her greens and buy lots of liver and red meat for her. Mil had some trouble settling to watch the film – up and down, up and down, saying she needed the loo every two minutes – but it was pretty obvious that it was just the old need to be ‘on the go’, that she just felt unsettled. She was asking over and over what time her appointment was, when was she going to the hospital, what doctor did she have to see, when were we going to that place that I’d said we were going too? And at around 3pm, a sudden query as to had she missed the bus – to go home? My heart sank. We had given her the  prn dose on arrival at home, as recommended by the hospital, and we had been told that sundowning wasn’t kicking in till at least 5pm – but here we were, faced with the dreaded ‘home’ already.  However, with the questions, and the up and down, and the mention of home, Mil accepted our explanations and reassurances easily. There was no feeling that she was brewing up to an explosion, which was what we had had to deal with previously and we were fairly onfident that it was all going to be ‘OK’.

Just after 4pm, OH who hadn’t been well, asked if I minded if he went to bed for an hour. I didn’t foresee any problems, so of course, I was fine with it. About 10 minutes later, after making Mil a cuppa and seeing her settled with a game show she likes, I went into the dining room to deal with an important email. 25 minutes later, after switching on the cooker to start tea, back into the lounge with a smile and and offer of another cuppa, adding that it wouldn’t be long before I would serve up her cottage pie for tea.

And she quite simply turned on me. Out of the blue, no build up – just BANG!

How dare I speak to her like that, I had a fucking cheek to talk to her like that, after I had spent the afternoon battering her senseless. I had knocked her all round the fucking house and left her black and blue. I was a heartless bitch, a vicious cow. She would tell her husband what I had done and he would ‘beat me up’. She was going home. She was phoning the police.

I tried validating her claims without agreeing to them – I was so sorry, I said, that she felt like that – would she like a cup of tea and we could talk? I was told where to go, in language that would have made a navvy blush. I asked her would she like to go to her room to ‘have a break’ from me? More swearing and threats and an absolute fury that was actually quite scary. I told her I would go and ‘sit in there’ (meaning the dining room) and leave her in peace. I walked away, spotting the phone and taking it outside to the patio, out of her way. I had intended to sit and have a smoke, where I could see her through the doors, but realised that she was following me through to the dining room, so I came back in, leaving the phone outside, and quickly locked the doors, pocketing the key. I was glad I did. As I turned to face her, she demanded the phone to call the police. I told her I didn’t know where it was, and went to sit at the pc, thinking if I ignored and didn’t make eye contact, she might calm down. But she came up close and sort of loomed over me, and I could see her fists were clenched. I was told to give her that ‘fucking phone, right now, you bitch‘.  I got up and she came at me, obviously intent on thumping me – and I ran. Absolutely no doubt in my mind, either at the time or on looking back, that she was going to strike me. And that she was so angry, so furious, that she would have hurt me.

I have always said that physical violence would be my ‘line in the sand’. Quite simply, with our youngest daughter in the house, we had both agreed that there was no way on this planet that she should be subjected to seeing her Nana actually becoming physical, and nor could we risk the potential for her Nan to actually turn on her. But at this point I realised that it wasn’t just my daughter that I had to consider. I knew with total clarity that this was something that I couldn’t cope with for my own sake, either. After nearly 3 years of being a verbal punch bag to Mil’s dementia induced insults and accusations, I simply couldn’t face having to deal with the probability of physical attacks too. It was just too much, and I couldn’t do it. Oh, I know that it must have been a stressful day for her – the sudden change in routine, the being back home – but in normal family life, there are sometimes unexpected and not-so-unexpected changes, and if she had done this once, then there was the potential for it to happen again – and I simply didn’t feel I could take that risk. I didn’t want to take that risk.

I was done.

I ran up to OH and down he came. He tried for about 15 minutes to calm her, to no avail. She maintained that I had mistreated her, that I had beaten her, she rolled up her sleeves to show him the new bruises and marks I had (she claimed) given her – and was surprised that there weren’t any. She demanded that OH phone his dad – he tried the ‘think about what happened to my dad, mum’ – but she just got angrier. Then it started to become apparent that we were back into the old, old scenario where OH was her husband, not her son – and I was the evil bitch he was having an affair with. She was getting to the point of hysterical, and even from the dining room, where I had gone to stay out of her way, it was clear that nothing OH was saying was getting through  to her.

OH called it. He came into the kitchen where I now stood and told me he was phoning the hospital, that she was going back there. I asked was he sure? (I didn’t disagree, but its his Mum – he had to be certain too). He was very sure – we couldn’t live, he said, with the potential threat of her physically turning on me, or our daughter, hanging over our heads.  I am not sure what he said on the phone, but Mil was still ranting and accusing, and he asked me to drive to the hospital because she was so angry, so agitated, and so obviously volatile that he felt he needed to sit with her in the back seat. We piled everything back in the car, and she began asking to stay, saying that I should go instead. I couldn’t even speak to her. I was guenuinely so shaken and upset. She continued to accuse me of hitting her, insisting to OH that she wasn’t ‘lying’, that I had thumped her and kicked her – but now the tale grew to include her asking was he ‘sending her away’ because she had hit me back? She asked was it because of what I had said that he was breaking up with her? Over and over he reminded her that he was her son, she would agree and then in the next breath he was back to being her husband.

At the hospital, an incredibly sudden change as she greeted the staff nurse (I think that’s his title) who opened the door to us, telling him that she had ‘just seen his double’ on the telly. Another nurse carried her off with the promise of a drink, whilst the staff nurse organised coffee’s for OH and I and we went off to one o the quiet rooms to explain. Thank goodnes there were no ‘I told you so’s’ – he was totally understanding and quick to tell us we had done the right thing when I recounted what had happened. He said he was amazed that we had coped for so long already, saying what a huge character Mil was and how she had left a lot of the staff stymied by her determined fixations and behaviours. He said that there was no way he could have coped with her in a home environment, that he honestly did not believe that anyone could, and that he admired us for trying. That all helped, because I was now feeling absolutely dreadful. Though still certain that physical violence was a step beyond what I could deal with, I was starting to wonder if I could have done anything differently?. I asked had I provoked this all happening, by spending time answering an email instead of sitting with her? He countered with even if that had sparked it, that having to leave her alone in a room whilst I answered emails, or answered the phone, or perhaps had to cook, or even just went to the loo, was something that couldn’t be avoided completely, that it was impossible for me or anyone else solo to be by her side for every waking moment for hours at a time. That helped too, because he was right – that level of intense support would be impossible for just one person to sustain. Especially when – as he pointed out – that with unpredictable but paranoid delusions dictating what she believed at any given time, even dancing constant attendence wouldn’t guarantee that she wouldn’t turn violent again.

We stopped to speak to Mil on our way out of the hospital. I don’t think she even remembered having left the place earlier, or the meal out – and certainly not (judging by the attitude to me) any of the accusations or the fact that she had tried to attack me.

She did ask when she was going home? Which just about broke my heart.

So, there it is. Mil remains on the assessment unit, whilst we wait for a place to become available at the home we think is best for her. A lot more has happened, but I’ll save that for another blog.

I am still totally gutted that we couldn’t make it work. But I also still think we were right to at least try with the assessment unit and the removal of medications. To go on as we were before hand was becoming more and more impossible. I feel like the admission to the EMH assessment unit was us desperately trying one very last thing, in the hope that it would allow us to continue caring for her at home – it didn’t pay off, but there was always that chance that it would have done, and if we hadn’t taken that chance, there would have always been that feeling of ‘what if?’. We may have staggered on for another 12 months without the admission – but I doubt it. I think the descent into violence was always on the cards, it would have happened anyway – maybe even sooner – without the stay on the ward. And if she hadn’t had that bed in the unit, for us to take her to, I wonder what would have happened, how we would have coped without that as a safety net, when she did turn?

The ‘journey’ hasn’t ended here. I might not now be doing 24/7 hands on care, but we are still caring, albeit under very different circumstances and facing very different issues. Its taking some adjusting, and the impact of the last nearly 3 years of Mil living here, as well as the several years before that, of supporting her in her own home, is making itself felt. A little like banging your head on a brick wall, you only realise how much damage you have done to yourself, when you actually stop.

It will take a while to recover, I think.

 

 

 

 

 

A decline – maybe a blessing in disguise?

Mil currently remains in hospital. After the issues and stress mentioned in the previous blog, Let down . . . again! , finally it has felt like we are getting somewhere. Over the last few weeks, the majority of the medications prescribed over the many months prior to her admission, have slowly but surely been withdrawn. There appears to have been some improvement, though we have been strongly cautioned to be aware that a lot of this may be down simply to the ‘institutional’ type routine there, which can sometimes be the thing that a pwd responds better to at this stage of the illness.  Sundowning now seems mainly to be restricted to evenings, after tea. There is still quite a bit of paranoia, often she is very worried about men with guns or knives coming after her, and there is still the wanting to go ‘home’ at that time of the day – but that is a huge change from nearly all her waking hours being spent in a state of terror or anger. We are about to have her home, for a two week trial period, though we have been promised that her bed at the EMH unit will be held for her during this time. We’ll find out then if the improvement is down simply to medication or mainly because the routine of an institutional setting is now better for her – and if its the latter, then we have some difficult decisions to make. But all that is for another blog. Here, I want to talk about other changes we have seen in Mil, specifically how her grip on reality has once again, sadly, slipped even further.

For years now, we have lived with the delusions and confabulations that are the basis for much of Mil’s communication with us. For the most part, her confablations have actually sound quite plausible a lot of the time, especially to anyone not familair with her and her illness.  The content would often sound quite sensible – she would perhaps chat about the trip to Ireland she had just been on, give accounts of how she had visited her brother, had maybe gone to a dance , or attended a christening whilst on her holiday. The details were amazing and complex, the tone of voice and language appropriate. If overheard by someone not familiar with her and her situation, I am sure that most would believe every word. Questioned by doctors and dentists and the like, she would give confident and assured information about her medication and symptoms of any particular illness she may have. That information would, 99% of the time, be completely innacurate, but more than a few medical folk fell for it, so convincing was her delivery.  Her CPN would visit her at DC, and Mil would tell her  that she was just a ‘volunteer’ there, helping out, making tea or cooking or just visiting the ‘patients’. That Mil actually worked in a shop and lived quite independently at her old address still.  The CPN frequently marvelled to us about how utterly believable these confabulations/delusions were, adding that the fact that as Mil was always dressed smartly, with her hair styled and often the ‘lippy’ in place, that she looked so ‘normal’ that it made it very easy to believe everything she said. And for the most part, even the more paranoid delusions/confabulation were delivered with a fluency and conviction that might give someone unfamiliar with Mil pause for though, have them wonder if she was telling the truth ?  Someone had gone after her with a knife? – well,  perhaps they were trying to mug her? That sort of thing could happen, even if it sounded unlikely.  And because her  emotional responses were appropriate to the situation she was describing, because she would chortle as she described the ‘chubby legs’ on the ‘babby’ being christened or express real fear on her face and in her voice as she spoke about the ‘man with the knife’, it would add considerable weight to the believability of what she was saying. OK, there was the odd tale where the content would strain the belief of even strangers, but on balance, the majority of Mil’s confabulations were extremely hard to spot as being fabrications – unless you knew her.

In the last few weeks before she was admitted to hospital, this ‘balance’ started to change, however.  Oh, she could (and often did) still sound utterly convincing, but even someone who wasn’t aware of her condition would have had trouble believing the tales of how Mil had spent the day at her schools sports day, taking part in the high jump and running races – a tale like that, no matter how appropriate the language, no matter how convincingly delivered, simply isn’t believable when its being reported by a 75 year old lady who uses a zimmer frame to get around!   For 2 or 3 years already, she had struggled with remembering how old she was, and would sometimes guess her own age at being anything from early teens to her 40’s or 50’s. But this was intermittant and often, she would either realise herself that she had her age wrong, or be easily persuaded as to her correct age.  Now,  by far the the vast majority of the time saw her absolutely fixed in the notion that she was either still at school, or at most, in her late teens. And this belief coloured the content of a lot of her confabulations and undermined the believability of them, even whilst her delivery of them remained just as convincing sounding. At the same time, she became – well, I guess the nearest description I can get is to say she became ‘less aware’ of the contradictions between what she thought her age was and her physical infirmities and presentations. Several months ago, I found in her tears because she was ‘ashamed’ of having dentures when she was ‘only 17’ .  She ‘knew’ that 17 year olds didn’t usually have false teeth, and  just couldn’t understand how it had happened to her.  Now, she could be handing over her dentures for me to clean, whilst burbling on about how she got detention in school yesterday, because another girl in her class had ‘made up tales’ about something Mil was supposed to have done. And the contradiction just didn’t register at all. This made things slightly easier in some respects – anything that lessened the chance of her getting upset had to make things easier. But in other respects, it was no different, because at this point she retained the ability to quickly spot any inadvertant facial expression or unguarded comment or exclamation on our part, that might indicate that we didn’t believe whatever it was that she was saying. And she could and would get very offended and very angry.

I think that this was pretty much the stage she was at when she went into hospital. Over the last 2 weeks or so, there has been another very noticable change.  I became aware of it in the week after she returned to the EMH unit after her stay on medical for the last chest infection.  At first, I did wonder if the change I saw was perhaps because she was still recovering from the 3 infections she had had in very quick succession, and if it might change again. But now I am pretty sure that the latest is here to stay and actually signifies yet another decline in her mental state.

The content of the confabulations and delusions is now becomming more and more nonsensical. Its often like listening to fantasy type fiction, to fairytales, at times. And her delivery has become less believable as she is no longer as fluent, she struggles more for words and loses the thread of what she is saying halfway through even the shortest of sentences at times.  One visit last week saw us listening to a tale that started off about a ‘draw’ (raffle) that two of the other patients had ‘put something into, but they wouldn’t tell me what’ but then changed, with the ‘draw’ becoming a ‘drawer’ and how another patient hid the drugs he likes to sell in this ‘drawer’.  Almost without pausing for breath, she then rolled up her sleeves to show us the plaster she had on each arm (where bloods had been taken) and told us in a very matter of fact way that it was where “that bitch puts the poison in” – her tone, her manner of delivery,  her facial expression in no way reflected the unpleasantness of what she was claiming. But because this was verging on the paranoid thinking that can still cause her to get upset, OH tried to change the subject by talking about our two dogs – a nice safe topic. Or so you would think. Mil asked where her dog was, did she not have a dog of her own?. OH replied that no, her old dog Spot was long gone, and so was her cat, Blackie. “Oh, said Mil “I know Blackie. He came to visit me here yesterday. He brought me a bag of diamonds”. 

Caught on the hop – which often happens now when dealing with some of the exceedingly ‘odd’ tales we hear – OH incredulously queried a dead cat, bringing her diamonds?  Mil confirmed that this was indeed the case, and that she now had them hidden in her bed. She has gone from recounting tales of the unlikely but still perhaps believable, to recounting tales of the absolute impossible and often, downright silly. And yet she believes every word is the truth, she just doesn’t see how impossible or unrealistic what she is saying actually is. There is no recognition of what can and can’t be real, at all.

(Its odd, how her own grip on reality has slipped so much, yet she still see’s herself as very ‘different’ from the other patients on the ward, by the way. She frequently points out other patients as being ‘nutters’, or ‘not right in the head’, citing the strange things she hears them say or see’s them do as proof that they are ‘mental’ . She sometimes gets cross about having to put up with these ‘nutters’, or she might take the stance that ‘bless them’, they are to be pitied – but has absolutely no idea that she herself, that her behaviour and her perceptions about what is really happening, are in no way different from the other PWD’s on the ward!)

And the other noticable thing now is that she was not one bit upset or offended by OH questioning her account. Because that awareness also seems to be largely gone. She is seemingly oblivious to surprised looks or exclamations. She is no longer reacting with anger even if we express disbelief clearly, no longer demanding ‘Don’t you believe me? I am not a liar!’ if we question what she says.  Or at least, she isn’t as long as she isn’t sundowning.

I’m calling this situation a decline. And I guess it is. But its also led to her seeming to be more content and calm, again as long as she is not in the middle of a sundowning episode. So in a very odd way, if the ‘decline’ is responsible for her being less stressed and agitated,  its a decline I welcome. As said in the title of this blog, it may be a blessing in disguise.  Anything that lessens the misery she experienced almost every waking minute, several months ago, has to be better for her and us, even if it means that we have reached another big step down on this journey.

The issue now is not being sure if the level of improved content and calm, that we are now seeing more of in her behaviour, is down purely to the decline, or down to the medication changes – or perhaps down to the institutional setting,  which may be providing a routine that is more suited to this stage of her illness. I guess we will find out when we bring her back home in the next week or so.

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Let down . . . again!

I swear that often the most stressful part of being a carer is dealing with the continual let downs that you encounter from the very services and agencies that you would think are there to help you.   Mil has now been in hospital for several weeks, and though initially we were so hopeful that they would be able to help her, once again dealing with the ‘authorities’ involved has been an incredibly frustrating and stress filled exercise.

This is a ‘diary’ of what’s happened over the last few weks since Mil’s hospital admission. It was a planned admission, to finally (after months of us asking) try and sort out her medication. Each time we had seen one of the stream of locum consultants for the previous several months, her medication had been added too, with doses going up and and down, new meds coming, the occasional old med going, and she was now on a frightening cocktail of some very serious drugs – we felt that none were helping, and that there was even a chance that some were making her presentation and behaviour worse. The hospitals intention – so we were told – was to withdraw this ‘cocktail of drugs’ under medical supervision, and then if necessasary, work out a much reduced/different drug regieme that actually would help to combat the severe distress and agitation that both we as a family, and the staff at day care, had been struggling to cope with.  In a  previous blog Long and winding road . . .  I’ve explained in detail how and why this admission had come about.

Mil was admitted on Saturday, 16th of April. OH and I take her in and are impressed by what we initially see in terms of the ward layout, which is not very ‘hospital like’, and by the staff we encounter who come across as kind and very down to earth. There seems to be a really high staff-patient ratio. Its hard leaving her there, but its helped because both OH and I now feel that at last, something may actually be achieved in terms of helping Mil. We have been told that although her consultant is now on a weeks leave, that the plan is to start withdrawing some of her medication on Monday. The next morning, I phone and am told that she has been agitated and asking to leave and that its likely that a Section 2 will be applied to her, so that the hospital can legally hold her there for treatment. We are also told that they can’t start withdrawing the medication until this section 2 has been applied, which contradicts the previous info given. We visit, and find her confused, repeatedly asking to leave, which alternated with her being convinced that she was in prison – though she couldn’t remember what she had been jailed for. When OH visited the next day, she was however very agitated and over the 45 minutes he stayed, she got increasingly angry with him. He deemed it best to cut the visit short. Tuesday, I tried to visit but was thwarted by the appalling lack of adequate parking facilities – I gave up after over an hour driving round and round the hospital. I phone, explained and was told it was OK, but if possible could I attend a meeting the next day. I got a phone call later that day saying the section 2 had been placed on Mil.

So, Wednesday, 21st of April I attend the meeting.   I was informed that firstly, they hadn’t started withdrawing any medication yet, as her consultant was away on holiday.  Informed that they were keeping an eye on her blood sugar which was ‘low but just within normal limits‘ and though I was told that the first lot of tests they ran on blood and urine were ‘fine’, the second ‘check’ has revealed she has a UTI, and she had been put on AB’s for it. The junior consultant commented that she ‘had’ been on a low dose on antibiotics when she was first admitted’. I didn’t pick up on the fact that he had used the past tense till a much later date. For perhaps the second or third time since her admission I am asked what we want/expect from this hospital stay and I trotted out the oft repeated desire to see an end to the extreme agitation that we feel puts Mil at risk and is increasingly impossible for us to deal with. It feels a little like I/we are having to constantly justify our pushing for her being there. And again, I am queried about her reaction to both lorazepam (which sends her higher than a kite) and diazepam (which has as much effect as smarties). I do feel like they don’t believe me.

Visits over the next few days find Mil completely confused, at times agitated and paranoid, although not as severe as we have seen at DC and at home. A part of every visit is spent trying to track down Mil’s belongings and in returning other people’s things (especially her roommates) as Mil is spending a lot of time packing and attempting to leave.  On Friday, 23/4, we were told that partially due to bed shortages and partially in order to give Mil her own room, rather than her sharing with one other person, that they would like to move her to the ward specifically for dementia patients. This move takes place on Sunday 25/4.  During this time, I was once again questioned about the use of diazepam, which they are still giving her, despite us repeatedly telling them that it doesn’t work, and despite a couple of the staff commenting that it doesn’t appear to have any impact – other than make her unsteady on her feet.  On the 25th,  in response to me mentioning that we had originally been told that she would be in the hospital for approximately two weeks, we were that no, that wasn’t likely and that when it came to discharge we would be told in advance and there would be meetings and arrangements made before she came home. Although we do want her back as soon as is possible, we were also relieved that this indicated that she would not be home until the issues surrounding her behaviour and medication were properly addressed.

At a meeting we were asked to on the 27th (Wednesday), Mil’s consultant (now back from his holidays) tells us that the zopiclone has been stopped but that Mil is sleeping well still. Still no sign of the social worker that we have been told will be allocated. Feedback is that during the day she can become agitated and requires a lot of reassurance. Staff are querying the use of a frame as Mil is apparently picking it up and walking with it, rather than needing it for support. However, this was at odds with what was said to me during a phone call from the OT, who had commented on how he felt that the parkinsons gait necessitated the use of the frame. We were told that the next step would be to start withdrawing the memantine, followed by the withdrawal of orlanzepine. A ‘provisional’ date of 11th May was set for the next ‘meeting’, two weeks ahead.

Over the next few days, I am a little concerned as one or two nurses mention that some nights, Mil isn’t sleeping properly, that she is ‘restless’ and up and down. There’s also a feeling that we are given somewhat conflicting information, depending on who talks to us, about exactly how agitated Mil is getting at times. Some simply say she is ‘manageable’, but others comment on her persistence and how she has to be continually reassured and redirected when agitated, how she goes from staff to staff and doesn’t give up. How she is never still, constantly pacing and on the move. It sounds to us as though some are seeing something approaching the level of distress that we see at home, but others are saying differently. I make a note to myself to query this at the next meeting. I visit on the morning of Saturday, May 1st and am told that she is in bed after another ‘very restless’ night. I go to her room, find her very confused and rambling and I note that her breathing sounds ‘off’. I report this to a nurse who comes into Mil’s room, and again to another staff member as I am leaving. That evening, I get a phone call saying she has fallen, and I again say that she might be ill, that her breathing wasn’t right when I visited that morning. The fall hasn’t caused any serious injury, but I’m told she will be checked over by a doctor and the breathing concerns will be mentioned.

Sunday May 2nd, I again visit, and discover that Mil is in an ambulance, waiting to be transferred across to the medical side as they suspect a chest infection. I’m told that her breathing has deteriorated rapidly that morning. I go in the ambulance with her, and at this point I overhear it mentioned that Mil’s maintenance antibiotics had been stopped by one of the consultants, who doesn’t ‘approve’ of prophylactic antibiotics.  I’m not happy – we hadn’t been told or consulted, and though the ab’s were primarily to try and keep UTI’s at bay, the fact that since starting them she hadn’t had either a chest infection for over 12 months, or a UTI for even longer, shouldn’t have just been dismissed and the antibiotics stopped. I stay in majors, in A&E for an hour or so, leaving only because I have to pick up my daughter. She is transferred from Majors to MAU (Medical Assessment Unit) the next day, and from there to another ward, where she remains until Monday, 9th of May. During this time, we visit virtually every day and are concerned by how much she seems to have gone downhill, physically.  She looks thinner, her breathing remains poor for quite a while despite first IV and then oral antibiotics, and her mobility seems scarily bad, with her now fully dependent on the frame. The paranoia in particular is still very evident, and she claims at different times to be in hospital as the result of a variety of assaults and attacks. At other times, she doesn’t even realise she is a patient, and thinks she works there as a cleaner.

On the 10th of May, Tuesday, OH visited her back on the dementia unit. He remained concerned about her mobility. After he returned home, I got a call asking us both to ‘pop in’ to see the consultant the next day. I explained that I wouldn’t be able to attend as I was due to have a platelet injection in my hip, and assuming it would be similar to the cortizone injections I’d had before, that I would probably/possibly have to ‘stay off my feet’ for a day or two. However, I told them OH would be there is if could be. I was told not to worry, that it was nothing ‘urgent’.

The injection the next day, on the Wednesday,  was far more painful and had a far bigger impact on my mobility than either OH or I had been expecting. I was unable to weight bear properly and in a lot of pain. OH ‘popped in’, as requested, by himself.

When he returned home, all hell broke loose.

OH says that when he met with the consultant, he was again asked what he wanted for Mil, long term. He again told them that we wanted her home as soon as possible. Having said it so often, he didn’t see the need to repeat the added qualification that it was a case of ‘as soon as possible once her medication was sorted’, and said he felt completely put on the spot when the consultant instantly went into a conversation with his junior about having her discharged there and then. OH quickly explained about me being ‘off my feet’ after the injection and says that the response was OK, they would discharge her the next day. He didn’t feel he was being given any other choice.

When he came home and told me, I hit the roof. Shocked by how painful the injection had been, shocked by how badly my mobility had been affected, completely unprepared for the prospect of Mil coming home with so little notice, I blew. Phone calls to the hospital – who insisted that this was all OH’s idea (which he denied) – and to the CPN who sounded as shocked as I was, and a humongous row between OH and I.  I eventually said that if she was coming home, whilst I was in no fit state to care for her (bearing in mind that OH was due to start a run of three 13 hour shifts at work from the Friday) , then I would move out and told the hospital and OH that they had better arrange carers to see to her personal needs, and to be with her whilst he went to work.

I was so angry – this was nothing like what we had been told would happen, we had no information on exactly what medication changes had been implemented, or what the effect of that had been. When I asked, I was told that she was now on the ‘Optimum medication for her condition’ – which told me nothing really.  And as I was being told this, I could hear Mil in the background, demanding to be allowed to ‘go home’ whilst anoter member of staff was attempting to distract her and calm her down. I was worried about her mobility, concerned about the reports of disturbed nights and had no idea how I was suposed to cope. Had I been warned that this was likely to happen, there was no way that I would have gone ahead with the platelet injection.  I couldn’t work out how they could possibly have assessed the impact of any medication changes when she had spent most of the previous 14 days on a medical ward, being treated for an infection – an infection that would have impacted on her behaviour anyway.

I strongly suspected that the discharge was more down to the desperate need for beds on the ward, than because it was an appropriate time to discharge her.

The following day, OH managed to arrange for her to stay in hospital till the following Monday. On the Friday, 13/5, I recieved a phone call telling me that once again, ‘infection markers’ had shown up in her bloods and she was being moved back to A&E. Slipped into the conversation was the information that Day Care had been and  ‘assessed Mil’, were willing to take her back and not only that, but they had a bed free, if we wanted to send her there whilst I recovered.  In the midst of everything else, I didn’t really pick up on that information. On the 14th I received a phone call from the staff nurse on MAU querying Mil’s address, asking about her husband and did she smoke and was she continent?, as Mil had been giving them conflicting information. On her prior stay on MAU and medical, she had been accompanied by a one to one member of staff from the EMH unit, as under the terms of the section 2, this was hospital policy. I asked the staff nurse where the support staff was, explaining that Mil was under a Section 2 – and I was told it had been removed the previous day on the consultants instructions. We hadn’t been told.

Monday morning, I contacted the Alzheimers Society dementia helpline and explained the situation. The person I spoke to was appalled and gave me the local number for complaints about the mental health service. They were also not impressed with what had happened. From there, I was directed to the hospitals ‘concerns’ department, intended to deal with issues before they reached the stage of formal complaints. And from there, was asked to contact a ‘discharge’ officer – who was extremely sympathetic and who agreed that procedures had most definitely NOT been followed. This was followed by a call from the ward manager at the EMH unit (dementia ward).  By now, I’d amassed a lot of information on what should have happened before discharge was implemented and the ward manager agreed that a physio asessement should have taken place, that there should have been a proper, planned discharge assessment and meeting, that we should have been informed that the maintenence antibiotics were being stopped, that we should have been given accurate information and feedback on medication changes and the impact of those changes, that we should have been told that the secion 2 was being lifted. He agreed that the impact of the infections and the length of time she had been absent from the unit meant that atually, there was no way that a ‘proper’ assessment could have been completed and also agreed that we were entitled to know in advance of Mil coming home exactly what they had acheived in terms of reducing the extremes of anxiety and agitation – which was the reason for the admission in the first place. He tried to tell me that during the scant time Mil had spent back on EMH in between the last and the current stay on medical, that she had been ‘very calm’ – when I told him I had actually heard for myself, during a phone call to the ward at this time, Mil clearly agitated and begging to leave in the back ground, all he could do was say  ‘Er – did you? Right’.

OH visited both that afternoon and evening. In the afternoon he walked in to find Mil had a nurse ‘cornered’ with her frame, because the nurse wouldn’t open the fire escape for Mil to leave. Mil was also refusing to allow them to give her the next dose of IV antbiotics.That evening, Mils spent the full visit demanding to leave, very agitated.

So much for her now being on the ‘optimum medication for her condition’ and her being ‘quite calm’ as we had been told! Another phone call from the ward manager from EMH , asking us to attend a meeting on MAU on the 18th.

On the 17th, in the evening, I visited for the first time since before my injection. Mil wasn’t as agitated as she had been the day before, but her paranoia was as much in evidence as it had ever been. She veered from some very odd confabulations when she seemed almost ‘jolly’, to tales of how the staff on the ward were ‘back stabbers’ and not to be trusted. They had been lying about her. She didn’t feel safe with them. Again – so much for her being on the optimum medication – other than an obvious and worrying decline in how well she was medically, there was as far as we could tell absolutely no difference in her mental presentation. All Mil’s belongings, that had previously been left at EMH, were now piled around her bed – OH and I both felt that the hospital were preparing to discharge her from the medical ward, back home, as soon as possible.

On the morning of the 18th, I returned a call to the ward manager, he wanted to confirm we would be at the meeting at 11 a.m. I asked him who would be there? He told me the consultant would be present. I asked what it was about? He told me it was to find out what the next step should be, what we wanted to happen next.

I also called Day Care – it had started to worry me that the ward manager had told me that they had been to assess Mil and I wanted to know in advance of the meeting what outcomes, if any, there were from this ‘assessment’.  It turned out that they hadn’t been to see Mil at all, and nor had they spoken to the ward manager directly. They had informed the CPN that a vacancy was coming up at the home, but not specifically for Mil’s use. And they had merely phoned the ward to ask how Mil was as they had been told that she was on MAU, and nearly ready for being discharged. They also informed me that when they phoned MAU, Mil had answered the phone – which obviously, she was not supposed to do!  I have no idea why the ward manager had said that they had actually been to visit Mil and done an ‘assessment’.

OH and I arrived a few minutes early for this ‘meeting’. We were allowed to go and see Mil, but found her deeply asleep, as apparently she had been awake most of the previous night. She was woken for her morning meds just after the consultant and ward manager arrived. She greeted the consultant with an ‘hello love’ and an enquiry as to had he ‘finished at uni now?’. She then asked if ‘You boys would like a cup of tea?’. OH and I were hard pressed not to laugh as the consultant made a point of telling her that he was actually her doctor – Mil looked so unimpressed by the information.

The desire to laugh stopped abruptly once the ‘meeting’ got underway. I honestly don’t feel that saying that it felt like an exercise emotional blackmail would be any exaggeration. It started with OH and I being asked what we wanted for Mil (yep – again!)  We explained that we wanted to be sure that a proper assessment had been carried out, that she really was on the best and most appropriate medication, medication that would help her with the extremes of agitation and distress that we were struggling to cope with. They allowed that a proper assessment had not been done, but blamed it on Mil being ill. They also agreed that the hospitals discharge policy and procedure had not been followed at all. OH quickly pointed out that if her maintenence antibiotics hadn’t been withdrawn without them telling us, then the infections might possibly not have happened. They then said they wanted to inform us of what our options were. And this took the form of a  stream of repeated comments telling us that WE had options, that WE could choose to take Mil home or leave her in hospital. And an emphatic, repeated assertation that if WE chose for her to stay then she would be likely to get more infections, have more falls, lose more abilities. A clear message that if WE chose that option, she would end up worse off. That if however, WE chose to take her home it would probably be better for her.  It was up to US to chose – and then a repeat of all the possible negative things that could happen if WE opted for her to stay. Over and over, OH and I tried to re-direct them back to what about the possible positive outcomes? What if, if they did a proper asessment and really looked at the meds, they could give her a level of peace and freedom from the agitation and distress, which was why she had gone into hospital in the first place?. Several times it felt like our comments were dismissed with a brief acknowledgement that maybe that could happen – but then back to how she could pick up infections, fall and lose abilities if WE chose for her to stay and be assessed properly, again with the emphasis that it was OUR choice – it was hard not to feel that they were basically trying to guilt trip us into agreeing to Mil coming home asap. OH and I persisted in trying to get through to them that if she came home no different or worse, then caring for her there was looking increasingly unsustainable and that we felt we had to at least try a proper assessment and medication review that might help her, as it was possibly the only way to keep her out of residential care, which would be best for her. Eventually the ward manager made a very ‘fly’ comment about ‘well, if you want her to stay in for a few more days whilst you have a break . .  .’ . And I really lost it with him, pointing out that if he thought running to and from the hospital, constantly struggling to get consistent information and the worry of Mil being ill, combined with the stress and misery that they had caused in the last few days, constitued a ‘break’, then he had a damn cheek – and that I found his comment extremely offensive.  My outburst (it seemed) finally prompted them to actually talk about how they could perhaps help Mil if they did do what had been intended from the start – withdraw the excessive medications and find a balance of perhaps fewer drugs that might help her. But like a stuck record, again we were warned again about the infections, the falls, the loss of abilities, if WE chose that option.  Both OH and I agreed afterwards that we felt like they had been attempting to emotionally blackmail us into agreeing to Mil being discharged, and that they had put a lot of effort into avoiding discussing the potential benefits of her staying. We stuck to our guns. We knew that without something being done that we would, sooner rather than later, end up having to look at residential care for Mil – and with so few EMI nursing placements available, we knew that in that case she might end up living miles away. For her sake and ours, we had to at least try and see if an overhaul of her meds could perhaps make a difference. We left feeling like we had been put through the mill, but with (finally) their agreement that they would ‘properly’ assess her medication and try and make any changes necessary to help with her symptoms.  They also told us that as she was cotinually trying to leave, she would now have to be placed on a ‘Section 3’ – we were told this is for Mil’s ‘protection’, that it gives the family ‘more say’ in what happens to her, and allows the hospital to detain and treat her illness for her own sake. We agree to this.

Mil was moved back to the ‘dementia’ ward on the 18th of May. The paranoia seemed to be worse, with her spilling out tales of ‘the man with the stick’ who had attacked her and left her unconcious, and more comments about those ‘back stabbers’ and ‘liars’ who were trying to get her into trouble. On the 20th, we spoke to ‘R’, who is the social worker who has finally been allocated to Mil and after speaking to us and interviewing Mil, a section 3 was implemented.

We visited that night, and a nurse asked to speak to us, to go through the ‘latest’ information on Mil, and update us on her medication. We were shocked to be told that when they tried to discharge her a week ago last Wednesday, the only change they had made to her medication was to stop her sleeping tablet, the zopiclone – apart from also stopping her maintenence antibiotics,  that was the ONLY change they had tried. None of the drugs to deal with her behaviours had been altered in any way whatsoever, even the diazepam had been left at the 2mg dose prescribed before admission, this despite several staff commenting that it has no impact on Mil at all. And the notes also show that the only effect of them stopping the zopiclone was that (despite the consultant telling us that it hadn’t inpacted on her at all) she started to have sleepless nights. I then asked when the memantine and orlanzepine had been stopped (the consultant had told us he was stopping them on the 27th of April). Er . . . the memantine had only been stopped yesterday, he told us – but was due to be started again the next day. We asked why stopped for two days? He didn’t know. In fact he said it made no sense to him, at all. 2 days wasn’t long enough to get the medication out of her system, and therefore not long enough to assess any impact. The orlanzepine hadn’t been altered at all, nor the duloxitine. He confirmed that Mil’s current ability to sleep through the night was now very ‘hit and miss’. He also confirmed that although diazepam was still being given as both a regular dose and as a prn, that he had seen no evidence that it helped in any way. He confirmed quite openly that Mil was still displaying paranoia, that she was frequently agitated, that the delusions about her having a young child that she had to find were happening and that she was on occasion, very verbally abusive and angry.

We asked why we had been told on Wednesday 11th of May that Mil was on the ‘Optimum medication for her condition and symptoms’ and ready for discharge, when actually none of the anti-psychotic/sedative type drugs had been altered, which was the whole point of her admission in the first place ?. He again said he didn’t know.

And this is where we are up to now. Both OH and I are feeling a mix of confusion and disgust at what has happened. We obviously haven’t been kept fully informed, and at times, have been given some really misleading information. We don’t know/understand why, when the whole purpose of the admission was to sort out the excessive amount of medication she is on and hopefully improve the extreme emotional anxiety and misery she suffers from by finding the ‘best’ treatment for her, so little had been attempted. We are furious that we were told that they had acheived the ‘optimum’ status for her medication when in reality, all they had done was worsen her sleeping patterns. We are just as furious about the pressure we feel was placed on us to agree to her discharge and the awful stress this has caused.

I think most of us feel that we are ‘secure’ in trusting doctors and consultants to do what they say they are going to do. That we believe that these people not only can help, but that helping is their priority.  Its bloody terrifying when you find out that actually, they are no more reliable or trustworthy than any of the other services that have let you down when it comes to trying to support the PWD that you care for. We may be wrong, but we feel that despite all their claims to the contrary, Mil’s treatment has been governed by budgets and bed shortages – the aim has been to get her sorted and out, asap and when they screwed up on the ‘sorting her out’, then getting her out quickly became the sole priority, and they were happy to mislead us, to use emotional blackmail and a lack of open and honest infomation in order to acheive this. In a nutshell, they caused more issues with her sleeping, did nothing about her behaviours and so in fact, wanted to send her home having done more damage than good. And they knew it. And we are now left in the situation of having to constantly check up on them, always being on the alert for them being less than honest and employing sneaky tricks, as they try and get rid of her, and we try to make them help her. And we do have to make them – because the alternative is that we either find her an EMI nursing home, when there are virtually none to be had, or take her home and end up quite possibly having a breakdown ourselves, as even the consultant has said that caring for Mil’s presentation as it currently is, is impossible to sustain.

Once again, we, and more importantly, Poor Mil, have been badly let down.

 

 

 

 

 

 

 

 

 

Denial

In the first two or three years after Mil’s diagnosis of dementia, one of the hardest things for us to cope with was her absolute denial of her situation, in the face of her increasing needs. And from everything I read, from other carers posting on Talking Point, its one of the most difficult issues that many, many carers face.

I’m very glad that my husband was with Mil when she was given the diagnosis because I don’t honestly think she would have told us herself. The denial kicked in almost straight away with Mil insisting that her failing memory  was merely down to her getting a bit older, something that happens to everyone, and absolutely nothing to worry about. She was just getting a ‘bit forgetful’. That’s all. Nothing to worry about. If OH hadn’t been present, at that stage I think we would have accepted what she was saying as gospel. Her initial diagnosis was ‘Mixed Alzheimers and Vascular dementia’ – the only time Mil mentioned either the word ‘Alzheimers’ or ‘dementia’ was to insist that she had neither. Us mentioning either word would cause immediate upset and often anger, and not wanting to see her distressed, we tended to avoid using the words too.

And at first, it was easy to go along with this attitude. To be fair, at this early stage although the forgetfulness was apparant, it wasn’t a major issue. There was the odd panic-stricken phone call when she couldn’t remember where she had put her purse, the occasional incident of her not being ready when we turned up for some pre-arranged outing or activity because she had forgotten about it, and a little bit of repetition when you spoke to her. But far more worrying for us were the personality changes that we had noticed pre-diagnosis. The way she was beginning to isolate herself. Her not getting washed and dressed and spending all day in her dressing gown instead. The sudden bouts of  antagonism towards me and the beginnings of the confabulations and paranoia that later became major features of the illness for Mil. At the time, we had absolutely no idea that all these things were part of the dementia, and they worried us far more than her occasionally forgetting that she had put her purse away ‘safely’ in the tea towel drawer and now couldn’t remember where it was.

But this ‘denial’ did make things harder, not just for us, but for Mil too. Mil fastened on to anything she heard or saw or read that she felt supported her not having dementia.  She would misunderstand or take things out of context, twisting information to suit what she wanted to believe. After diagnosis, at her next memory clinic appointment, both OH and I went with her. Turning up at her house to take her to the clinic, she met us at her front gate, beaming from ear to ear and we were barely out of the car before she was telling us that she had ‘Good news’.  She had been to her COPD and diabetes medical review appointments and (she said) the nurse there had told her that she absoutely did not have alzheimers.  That she was ‘too old’ to have it.  People got alzheimers before they were 60, she informed us – this nurse had said so – so it proved she was fine, as she was now 67 and so couldn’t have ‘got it’. The memory doctor was wrong. Wasn’t that great news?  She couldn’t wait to tell them at the memory clinic. And as soon as we arrived and were called through to the appointment, she was telling the nurses her ‘good news’. Gently, tactfully, but very firmly, they told Mil that the nurse was wrong, that she did have the illness. Mil looked distressed, then angry, then mutinous – she clearly preferred to believe what she insisted that this nurse had said. Weeks later, and she was still insisting that a nurse (and sometimes that would change and it would become a doctor) had told her  that she didn’t have alzheimers.

We had (and still have) no idea about what this nurse actually said. It seems incredibly unlikely that she would have taken it upon herself to say any such thing to Mil, to contradict and basically ‘overturn’ a specialists diagnosis. But by now, we were becomming familiar with Mil’s habit of confabulating (sub-conciously inventing non-existent events and happenings) and thought perhaps that explained it. Several months later, I saw first hand how Mil could and would, when given information, pick up and run with only the ‘bits’ that supported what she wanted to hear. We’d had several months where OH and I had  found ourselves having numerous arguments with Mil over her diet. Despite the fact that she had been diabetic for years, we hit a phase where everytime we visited her (often several times a week) we would find ample evidence that when it came to sugary foods and treats, Mil was going completely overboard. She was up to a size 18/20 and growing, her breathing was worse with the excess weight and we were seriously worried about the long term impact on her diabetes. We talked to her, advised her, even on occasion had full blown arguments with her, and still every time we walked through her door we would find her house littered with empty chocolate boxes and wrappers, empty ice cream cartons or ice cream lolly boxes, empty cream cake boxes, biscuit wrappers and the like. We found recipts that showed, for example, that in one shopping trip she had spent over £20 on ‘treats’ (as she called them) – a family size trifle, a multipack of Turkish delight, a pack of kitkats, 2 boxes of Roses, 2 boxes of magnum choc ices, a box of 4 cream eclaires, a tub of vanilla ice cream . .  . and despite the receipt being dated only the day before our visit, most of those ‘treats’ had already been eaten. We would remonstrate and Mil would claim that her neighbour had eaten most of the goodies, or that she had been told that she didn’t have diabetes, or that the diabetes wasn’t too bad, or that the receipt was ‘wrong’ or it wasn’t hers.  Always an excuse, always denial.  So, we insisted that I accompanied her to her next appointment at the GP’s diabetic clinic, and despite Mil glowering at me, I told the nurse about Mil’s eating habits and how worried we were. The nurse laid out in detail about the potential outcomes if Mil continued to eat like that. She pulled no punches about how Mil could develop ulcers, or lose her sight or make her heart problems even worse. She told Mil that she could have ‘treats’ only occasionally and in moderation.  We left the surgery, walked a few yards to where OH was waiting in the car and Mil gleefully informed OH that it was OK – the nurse had said she could have treats. She absolutely denied that there had been anything else said. All she had heard was that she could have treats – the words ‘ocasionally’ and ‘in moderation’ had either not registered or had been instantly dismissed, along with all the dire warnings of what could happen to her.  Neither OH nor I could work out if she knew she wasn’t telling the truth or if she guenuinely believed what she was telling us.  It was frustrating, infuriating and worrying, in equal measures.

As time went on the dementia impacted increasingly on Mil’s ability to live independently and safely. Trying to deal with this, trying to keep her independent, was made a hundred times more difficult because Mils denial of the situation seem to grow as each new problem arose. Despite being advised over and over, by the memory clinic and social workers, to sort out POA for her son (Power of Attorney, to enable him to deal with her health and finances on her behalf, should the need arise), she refused to consider it, denying it was ever likely to be necessary and frequently accusing both myself and him of merely wanting to get our ‘hands on her money’.  No matter how many times it was explained to her, by us or by social worker or by her doctors, she couldn’t/wouldn’t accept that it was for her protection and that failing to sort it out now would potentially make it an incredibly complex and expensive issue for us to organise at a later time. This became a massive worry when she began to fall victim to cold callers and con men who knocked at her door. At the time, although we didn’t know just how big a problem this would eventually turn out to be, we were nevertheless aware that she was being persuaded to hand over large sums of money for equipment, items and services that were uneccessary and unbelievably expensive. On each occasion that we got a panicked phone call from her about goods that she had no recollection of buying being delivered, or when we arrived to visit and found boxes and packages of expensive items that she didn’t need littering her house, we would spend hours and a small fortune on phone calls trying to sort it out when we had no legal authority to do so, which made it all so much harder. And still , she continued to deny that it was a problem. She could manage fine, she would remember next time to say no, she would insist on each occasion that this was the first time that she had got in to this sort of mess,  there was absolutely no need for her to organise POA, not even to help us sort this sort of incident out quickly or even prevent it happening in the first place. She would tell us that ‘I’m not stupid!’ or that ‘I am perfectly capable, thank you!’ .  We spoke to her social worker, who told us that Mil had the legal right to make decisions even bad decisions – so she couldn’t help.  What could we do? Stand there and tell her that no, actually she wasn’t capable any more? That would humiliate her and distress her. It might also make her angry, and we had no desire to face that either. It was the same story when we had to try and sort out missed medical appointments that often meant she recieved letters telling her she was being removed from this or that consultants list. Without POA, no medical department would agree to us being sent details of upcoming appointments on the grounds of ‘Patient Confidentiality’, so we had no way of ensuring that she attended. Nor could we check and make sure that bills were being paid – which nearly  resulted in a couple of court appearances for her. Nothing would persaude her, she was absolutely adamant that she could cope without our help, even whilst the incidents of her phoning us up in a panic to sort out the latest calamity were happening more and more often.

This ‘denial’ was a feature of every single issue that she faced. Frequent falls led to the advice that she should consider using some sort of walking aid, a stick or a frame. Even after two broken bones, on two separate occasions, Mil continued to deny that there might be a need to follow this advice. She denied that she fell that often, she absolutely refused to accept that she needed any sort of cane – ‘I’m not an old woman yet’ she would argue. Pointing out how she could end up seriously injured, how it might cost her her independence in the long term, even trying to pull the guilt strings by pointing out how much more running round we were having to do to deal with the consequences of her falls – all reasons were dismissed with an adamant declaration that she was fine.

One thing the social worker did manage to do – though to this day I have no idea how – was to persuade Mil to accept home care visits. Initially for just 3 calls a week and for 30 minutes each time, these calls brought OH and I some measure of reassurance. At this point we were having to visit at least 3 or 4 times a week, and often more. There were even times when we visited twice or more a day, in response to some ’emergency’ or other – she had misplaced money and needed food, or had forgotten that she had an appointment and needed us to take her to wherever she need to go quickly, or even crying on the phone to us that her TV wasn’t working (usually because she had removed the sky card, unplugged the sky box or taken the batteries out of the remote control). Having a carer call in on those 3 days meant less occasions when we would have to make a mad dash down to her house.  But Mil absolutely hated it. Despite all the reasons that she had been given for these calls, she was once again in denial. She didn’t need them. She managed perfectly well by herself. She did everything herself. She didn’t need any help.  It didn’t take long before she persuaded herself that I was responsible for organising what she considered to be a dreadful intrusion and despite being constantly reminded that I had had nothing to do with setting it up, she frequently insisted that I had done it to embarress her in front of her neighbours and/or to try and convince people she was mad so I could ‘come between’ her and her son and grandchildren. I was fairly quickly aware that this was the story she was giving to her neighbours and friends. It was hurtful – and infuriating.  She rang me at home one day, and when I answered the call she launched straight into a demand that I stop  ‘those girls’ coming to her house. She didn’t want them and I must cancel their visits ‘right now’. Because she didn’t know why I had thought I had the right to start it, but she had had enough and didn’t want them there any more. I explained it was nothing to do with me, that she had agreed to this with her social worker, that I no authority to change the arrangement. As I finished speaking, Mil began screaming, a long drawn out and repeated  ‘ARRRGGGGGGGHHHHHHHHHHH’ of frustration, whilst banging the receiver (by the sound of it) on the table. No response as I shouted her name, and then the phone went dead. I rang and rang – she didn’t answer. I was terrified and so worried at her outburst. I contacted OH, who arranged for emergency cover (he had the car and was in work) so we could go down and check on her. Down we went and found her in her usual attire of stained  dressing gown, and very surprised at us turning up. Why were we there? She was fine – there was no need for us to go down, she insisted.  I was shaking with reaction – she had really scared me with that outburst – and I spelled out exactly why we were there. Mil shrugged. As far as she was concerned, her screaming at me and banging the phone, her then refusing to answer my calls – well all those things were perfectly normal and acceptable behaviours when you got ‘a bit cross’ about something, as far as she was concerened.  She completely denied that there was anything ‘odd’ or worrying about what she had done – she had been, she insisted, totally reasonable in her behaviour.

She also consistently refused to allow the home carers to do anything for her. No, she did not need them to wash up, change her bedding, or help her wash and dress. She wouldn’t even allow them to make her a cup of tea. But she was growing more and more unable to manage every day tasks.  She was rarely showering or dressing. Her clothes, when she did dress, were often creased or even stained. The house began to look unkempt and untidy. She ‘banned’ OH and I from going upstairs for anything other than to use the loo.  She rarely left the house unless we took her somewhere, and even then it would sometimes take everything from gentle persuasion and pleading right through to the threat of removing her sky card to get her to attend appointments or even go shopping. A few times we arrived and walked through the door to be greeted by the smell of food gone off and we would find heaps of rotting veg in the rack, or even on one occasion, mackeal mouldering on a plate in one of her kitchen cupboards. She would go ballistic if we tried to perform any tasks for her, ranting if she caught us checking her fridge for out of date food or even if we tried to wash up or hoover. She began to lose weight rapidly, whilst insisting that she was of course cooking herself proper meals. We suspected she was living on toast and ‘butties’, having lost the ability to cook – this was confirmed when she moved in with us eventually, and we realised that making toast or the occasional sandwhich  was now the extent of her culinary ability.  We also saw (and smelt) evidence of frequent tummy upsets, the result of declining hygiene skills and quite possibly her  eating out of date sandwhich meats and bread.  Both OH and I, on occasion, pointed out very bluntly these issues and others, and still she denied and insisted she was fine, she was capable, she was coping. Incidents and concerns we expressed were always ‘one offs’ and explained away with a variety of excuses – she didn’t feel like cooking, her back had been bad so she hadn’t hoovered for a few days, her washing machine had inexplicably not worked so she was ‘a bit behind’ with the washing.  When I showed her that the best before date on the bacon in the fridge was for a fortnight before, she claimed that she had put ‘new’ bacon in  old packaging because the new packet had ‘ripped’ when she opened it. She could be sitting there, hair greasy and smelling of BO and urine, and still insist that she had ‘only showered yesterday and you don’t need to wash every day you know!’  When I dared to check her medi pack and discovered she had missed all of the previous days tablets, she asked ‘Do you never forget things, Susan?‘ and launched into a rant about how I never do anything wrong, how I never make mistakes and wasn’t it a pity that she wasn’t quite as perfect as me?. As a distraction from the original topic of her forgetting her meds, it worked really well and it was a tactic she employed several times to avoid confronting the issues we brought up. We saw from her care plan notes that the carers were rarely finding her  washed or dressed or that they were high-lighting some other worrying issue or other – mentioning this as proof that she needed help would send her incandescent with rage, with her ranting about how dare they ‘spy on her and write lies about her’.  She refused to acknowlege any issues, playing them down and accusing us of over reacting. She was incredibly good at going on the defensive or putting us on the spot by asking us if we thought she was ‘mental or something‘ or were we accusing her of lying?. She would deny that some incidents had even happened and accuse us of lying if we brought them up. And if we mentioned her memory, she often denied that she had ever seen a doctor about it, or that she had been diagnosed with anything remotely like dementia – and would add that she was sick of us lying about it. She frequently pointed out that she was an adult and asked how dare we think we had the right to interfere?  Logic and reasoning were vanishing along with her memory, making it impossible to even discus most issues without her getting incredibly upset and for a long, long time, it felt like there was little we could do in the face of such vehement denial and anger.

Just a few months before she ended up moving in with us, at the request of the company providing the home care visits, we were told that there would be a meeting at Mil’s house, with them and the social worker. We arrived to find Mil still in her night clothes, having forgotten that the meeting was taking place. The care company manager straight away raised concerns about Mil not taking her medication. Very much on her high horse, Mil informed her that she wasn’t stupid, that she never, ever messed around with her tablets and that of course she was taking them properly. The care manager annouced it would be easy to prove one way or another, simply by  looking at the blister pack and promptly fetched it from the kitchen. The doses for the previous 2 and a half days were still in the pack, Mil hadn’t taken them at all. Mil, already feeling uncomfortable because she was still in her nightclothes, stuttered and stammered and tried to find an excuse. She cliamed it was a ‘one off’, denied that it was a regular problem.  But the Social worker and the manager were pretty relentless, though they were obviously trying to be kind, and gently but firmly they railroaded Mil into agreeing to daily visits from the care team, ‘just to keep an eye on the tablets’. Mils embaressment was acute – but it was also completely unavoidable. It was a case of no matter how she denied it, the truth was inescapable and her safety was now the most important aspect, over and above her feelings.  I think we both knew at that point that this signalled the beginning of the end of Mil living by herself. No amount of denial was now going to be enough to keep her safe, and safety was now a bigger issue than all her arguments and excuses.

Even now, denial is a stumbling block as we try to care for Mil in our home. There is rarely a day goes by where Mil doesn’t argue that she is still capable of a multitude of tasks that are, in reality, totally and sadly beyond her. She will insist that she washes and showers herself, that she can see to her own meds, that she can cook and go off out by herself. She absolutely refuses to accept, 99% of the time, that her memory problems are anything more serious that her being a bit forgetful. She insists she can manage to live alone and without any help. As it has all along, this makes anything and everything you try to do to help her 10 times harder than it need be.

We are far from being the only carers who struggle with the issue of denial.  Talking point is full of questions about how on earth can you get a loved one with dementia to accept help that is obviously desperately needed – well ‘obvious’ to everyone but the person with dementia. Carers ask what they can do about constantly wet beds when the person they care for insists that they don’t have a problem with incontinence and they then come up with a variety of excuses and often quite bizarre explanations for the soaked bedding. Some have issues with a PWD denying that they have any problems with driving, insisting that they are perfectly safe and refusing to stop – even when they have been told by a consultant or the DVLA that they are not allowed to drive, even after numerous bumps and small accidents. Denying the need to sort out POA is common.  There are accounts of a PWD getting furiously angry when their carer attempts to check cupboards and fridge to make sure that food is still edible, because they deny that they have forgotten to check themselves.  The dilemma of how to keep someone clean when they constantly deny that they have forgotten to wash or shower.

It makes everything so much harder and there is little advice available on how best to tackle it – several years after Mil’s diagnosis and I know its still one of the most difficult issues we face.