Other improvements

Another example of the way that things have improved is that the disorientation in space that I discussed here is rarely evident now. Although S often takes her glasses off  -  for reasons that aren't really clear  -  when I hand them to her she always takes hold of them rather than my hand. Similarly when she gets into bed she usually manages to get her head onto the pillow in more or less the right place.

Another very helpful improvement is that nine times out of ten S is now able to get in and out of the bath with little or no assistance. For a period both I and her daughter had to help her and, even then, it was incredibly difficult.

There's no very obvious explanation for these and the other improvements I've recorded. I think maybe something else was going on and making things far worse during the autumn and whatever it was is no longer affecting her. It might come back, of course, but at least for now life is significantly better for both of us.

Progress report

There's no doubt that, over the last few weeks, things have improved significantly for us. As I've noted before, we have started getting out for walks again, though the weather is sometimes a deterrent. Even though S talks non-stop all the while we are walking and is often quite agitated this seems to 'get it out of her system' and she will sit quietly for a long time when we get home. It's also encouraging that her walking is as good as it's been for years. We've also been supermarket shopping together and had lunch in the cafe without any problem. On another occasion, we stopped off for a pub lunch whilst out walking. These are simple things but, when life was at its worst I didn't really expect to be able to do them again. You may be wondering how this has happened. The support we've had from family, friends and 'online friends' have certainly been invaluable. I know from reading online forums how many dementia sufferers, particularly the elderly, have to spend so much time 'home alone' and how many carers seem to have little in the way of support and my heart goes out to them. I think also that we've got more used to our situation - the sudden decline last autumn really hit me like a brick so that even though I'd always known that things would get worse I'd never expected it to happen so dramatically and then for a while things just seemed to carry on getting worse. I realise now that S was probably just as shocked and distressed as I was and that she didn't want to be the apparently helpless person that she seemed to be so has been making real efforts to respond to my suggestions, requests, and thoughts about what might help. Over time too her 'conversations' have become generally quieter and are not quite as negative as they were - more happy talk - though she still gets agitated and aggressive in brief bursts. Getting her to bed has become so much simpler than it was at one time as we have established a routine and she rarely protests when I or her daughter (who is still round at bedtime a couple of times a week) suggest going up to get ready for bed. Plus we've got better continence aids at night from the clinic so this cuts down the washing and means we both get a better night's sleep as S does not wake up too early. There has also been some improvement in terms of the incontinence.And there's good news on the food and drink front. Sheer persistence and lots of tips from different people, including the community dietician, have worked. I just have to accept that she is keener to talk than to eat and that meals take a long time. I tend to do a lot of calorie rich sandwiches but some kind of evening meal with dessert for which we sit up at the table. This week we've started sitting up at the table for breakfast too. S is only drinking apple juice at the moment but drinks a lot. Now she is over 8 stone and gaining weight all the time. People keep telling her she looks better. She does, and I keep reminding her that this is because she is eating and drinking properly. Support from professionals is still very patchy but I was put in touch with carer with long experience of working in dementia homes and I pay for a few hours from her each week. She gets on well with S, who really likes her and the carer is able to do more for her and with her as she gains her confidence. So I'm able to do a little more of the things I need to do and even some of the things I want to do! I think both of us are benefiting from this arrangement. In the last few week both my stepdaughter and I have noticed that S is more aware of us, asking how we are and responding more often to attempts to talk to her. She's also taking the initiative more with the cats which I'm very glad about as we got them for her but initially she barely seemed to notice them despite being a lifelong cat lover. There could be all sorts of reasons for this but I'm pretty much convinced that the fact that I've carried on giving her small daily doses of Aciclovir - the anti-viral drug prescribed for her herpes outbreak is a factor in the general improvement. 
(New readers see this: http://adventureswithdementia.blogspot.com/2012/01/more-about-possible-relationship.html)


So all in all, there's a lot to be grateful for but I keep reminding myself not to expect too much.

Another breakthrough?

This will be really familiar to anyone in my situation.  Some research is announced which seems to promise, at some point in the distant future, a 'cure for Alzheimer's'.  This one was the lead item on Channel 4 news last night (but if the BBC covered it I missed it).

It is exciting that a new avenue for research has opened up.  But immediately you start to calculate the chances of your loved one surviving long enough to benefit  -  not great.  Then you note that the drug in question has serious side effects.  In S's case this is very bad news as she almost always seems to get whatever side effect are going with any 'safe' drug   -  and often fails to get any benefit either.  Then it's always a worry when the researchers, as in this case judging by their astonishment, have no idea how the drug works.

Then you remember that there is no agreement as to whether the amyloid plaque, which the drug seems to remove in the brains of mice, is actually the cause of the dementia.  Some researchers have suggested that it may not be a good idea to remove it even if you could.

It is interesting to note that in this case the researchers are claiming that removing the amyloid material did result in improved behaviour and memory because the recent stories about a 'wonder vaccination' seemed to stall with the discovery that the vaccine removed the amyloid but did not restore the memories.

And a spokesperson for the Alzheimer's Society is always wheeled on to warn against false hope, in this case stressing that what happens in a mouse's brain is not always comparable to what happens in the much more complex human brain.

Most likely we won't hear anything more about this for quite a long time.  Remember my recent herpes post about the exciting research from at least five years ago that appeared to show that a cheap and 'safe' anti-viral drug, Aciclovir, could have a similar effect to this skin cancer drug now being hyped?  By and large this has got us nowhere yet.

One thing's for sure.  There'll be yet another 'breakthrough' tomorrow.  Or next week.

In the meantime, we struggle on.

Entering S's universe or trying to drag her back into ours?

This must be a bit of a dilemma for anyone trying to care for someone who has auditory hallucinations and is almost constantly engaged in conversations with figments of her imagination. For instance, very often and almost always when I'm trying to get S to do something she will suddenly announce,, 'She's gone!' and sometimes get very distressed.  I can either ignore this or try to reassure her.  But I can only reassure her by to an extent playing by her rules and at least briefly accepting the reality of her universe.  My rational self tells me that there is something wrong with this.  But sometimes I cannot stand listening to her distress.  I'll ask her, 'Who's gone?' and she'll reply, 'Micia' (the name of one of her 'friends'  -  named for a cat that we used to look after).  I'll say, 'Don't worry, she always comes back.' because she always does.  I don't know if this really helps S but sometimes it seems to and my concession to her distorted brain is a small price to pay.

There is something called validation therapy which, as I understand it, involves entering into a person's imagined universe in a big way and 'validating' their experience and perception.  I'd be very unhappy with that  -  and I'm sure I'm not alone  -  as I instinctively feel that it would be better if S spent less time in her universe and more time in the 'real' one.  And of course there's an approach that tries, probably with people at an earlier stage of the condition, to reorientate people to reality by, for example, putting great emphasis on the date, day of the week, time etc. This is called, unsurprisingly, reality orientation.

As usual, it seems to be a question of balance and going with your gut feeling.  So I am getting used to sometimes entering S's universe, usually to reassure her, and sometimes trying to get her to understand the real world again, usually when I need her to do something, or when I need to do something for her that requires her co-operation.  Once again, I count myself lucky that I can usually get her to 'snap out' of her imagined universe long enough to get things done, though often, as with eating, there's an almost farcical stop/start sequence involved.

What the carer said

The woman who now sits and watches S for a few hours each week is forming a very good relationship with her.

'Ah.....she's lovely.  She must have been a lovely person before......'  Awkward silence as she realised what she'd said and then I managed to mumble, 'She was.'

She was.  And is.  As S would say  -  one of her oft repeated phrases  -  'That's the whole point!'

More about the possible relationship between the Herpes virus and Alzheimer's disease

I've been in email contact with Dr Ruth Itzhaki of Manchester University.  Her team have found and explored a possible link between HSV-1 and Alzheimer's, a link which other researchers have apparently confirmed.  I contacted her because I increasingly feel that S's herpes outbreaks always coincide with a worsening of her symptoms but I have also found that when she takes Aciclovir (anti-viral medication) to shorten the herpes outbreak  -  and admittedly she has only taken it twice  - there are some signs of an increase in lucidity.

Dr Itzhaki tells me that there is no interest in funding this research and that her team may cease to exist in the near future.  If you read the summary of the research (below) you may, like me, be flabbergasted.

Role of a virus in Alzheimer’s disease, and prospects of treatment with antiviral agents

Almost 18 million people worldwide suffer from Alzheimer’s disease (AD) and unfortunately, this figure will rise as longevity increases. The need for effective treatments is therefore extremely urgent. (Current treatments alleviate symptoms but do not prevent further deterioration.) Most AD researchers investigate the disease’s main characteristics – abnormal structures in brain called tangles and plaques which are probably important features of the disease; however, despite the vast amount of information gathered about the structures, the causes of their formation are unknown.

Our research, which has strongly implicated a common virus in the development of the disease, is completely original and offers a direct route to treatment: very effective and safe antiviral agents are available to combat the virus and thus to treat AD patients. It indicates also the future possibility of preventing the disease by vaccination against the virus in infancy.

The virus implicated in AD, herpes simplex virus type 1 (HSV1), is the one that causes cold sores. It infects most humans in infancy and thereafter remains in the body in latent (i.e., dormant) form within the peripheral nervous system (the part of the nervous system other than the brain and spinal cord). From time to time – for example if the person is stressed – the virus becomes activated and in some people it then causes cold sores..

We found that the virus is present also in brain, in many elderly people, that it confers a strong risk of AD when in the brain of people who have a specific genetic factor (APOE-e4), and that it does become activated, perhaps recurrently, in brain. The likelihood of developing AD is 12 times greater for APOE-e4 carriers with HSV1 in brain than for those with neither factor.

Subsequently, we linked HSV1 directly to AD plaques and tangles. We discovered that the viral DNA is located very specifically in plaques. We found also that the main component of plaques, beta amyloid (Aβ), accumulates in HSV1-infected cell cultures and in the brains of infected mice. Taken together, these results suggest that HSV1 is a cause of toxic amyloid products and plaques. We have shown too that the main component of tangles – hyperphosphorylated tau – accumulates in HSV1-infected cell cultures. Studies by other groups have confirmed the HSV1-induced formation of Aβ and abnormal tau. Possibly, infected cells produce Aβ and abnormal tau as part of their “innate” immune system, in an attempt to protect against HSV1, but eventually these molecules are over-produced and then cause damage. Alternatively, cells may produce them because they are needed by HSV1 for its replication (the virus subverts the cell’s machinery to produce, in general, only such proteins).

We propose that HSV1 enters the brain in the elderly as their immune systems decline, establishes a latent infection from which it is repeatedly reactivated by events such as stress, immunosuppression, and brain inflammation induced by systemic infection, and that repeated activation causes cumulative damage* and eventually AD, in APOE-e4 carriers. (Other studies of ours support the concept that genetic factors can determine the severity of a microbial disease in showing that in the case of several diverse microbes, APOE affects outcome of infection. Probably significantly, we found APOE-e4 to be a risk for cold sores.) The mechanism might involve up-regulation of enzymes involved in Aβ formation and, via the known inhibitory effect the virus has on autophagy, prevention of abnormal protein degradation. Aβ might be produced as part of the cell’s defence response, initially entombing the agent and thereby preventing further damage to the host, but eventually, through overproduction, resulting in toxicity via oligomer formation. Infected cells, after suffering severe structural damage, die and disintegrate, releasing amyloid aggregates which develop into plaques after other components of dying cells are deposited on them. Presumably, in APOE-ε4 carriers, AD develops either as a consequence of greater HSV1-induced formation of toxic Aβ products, or as a direct consequence of virus-induced cell death or inflammation.

Our data suggest that antiviral agents might be used for treating AD. Currently available antiviral agents act by targeting replication of HSV1 DNA, and so we considered that they might be successful in treating AD only if the accumulation of Aβ and P-tau caused by HSV1 occurs at or after the stage at which viral DNA replication occurs.  If these proteins are produced independently of HSV1 replication, antivirals might not be effective.  We investigated this and found that treatment of HSV1-infected cells with acyclovir, the most commonly used anti-HSV antiviral agent, and also with two other anti-HSV antivirals, does indeed decrease Aβ and P-tau, as well as decreasing HSV1 replication (as expected).

We conclude that anti-HSV antiviral agents would be suitable for treating AD to reduce disease progression, with the great advantage that unlike current therapies, only the virus, not the host cell, would be targeted. Also, other viral damage besides Aβ and P-tau production that might be involved in AD pathogenesis would be inhibited. Further, ACV is very safe and relatively inexpensive.

*This is supported by a study by a prominent US virologist who has recently found that repeated activation of HSV1 in infected mice over a long period of time causes the formation of lesions in their brains

The lucky one

I'm sure that this is a common experience for people in situations similar to mine.  I've actually lived alone at various points in my life and mostly I've found it O.K.  My current situation is not remotely like that, because I'm not alone.  But for great long stretches of the day I might as well be, since S has at least one foot in a parallel universe where she often uses my name and appears to be talking to me but is actually talking to someone else.  Very often I hear her, during her conversations with the figments of her imagination, addressing someone else as 'Love' and using the exact tone of voice that she used to use to me, and still does occasionally in brief lucid moments.

To S, for much of the time, I might as well be part of the furniture.  She knows who I am and, fortunately for me, will respond to me briefly when I need to get her to do something, like eat enough so that she doesn't lose any more weight.  (One positive note in an otherwise rather bleak post  -  she's started to put on weight.)  These interactions sometimes lead to tense and tearful conversations, on both sides, but she clearly understands and believes me when I tell her I'm trying to help and we nearly always get whatever job it is done in the end because of her essentially helpful nature.  So I'm lucky in that respect.  But she shows hardly any interest in what I'm feeling, thinking, doing or saying (but still does, very occasionally) and that is what leaves me feeling a kind of loneliness that is almost indescribable.

I have great and invaluable support from family and friends but nothing can replace or compensate for what I have already lost and what I continue to lose day by day.  I never forget though that S has lost, and will lose, a whole lot more.  Despite what you sometimes hear from other people, I'm actually the lucky one.  I try not forget that when I'm almost at my wit's end.

The benefits of walking

We just rediscovered them.  During the first part of 2011, we managed to do quite a bit, sometimes nine or ten miles a week.  Then we went on a couple of holidays which disrupted the routine.  S's sudden decline put paid to any thought of walking outside for some time.  At one point we wondered if S was forgetting how to walk.  I remember saying to my stepdaughter that I thought it would be a great achievement if we ever got her the twenty or so metres to the end of the road.  Then we had a lot of foul weather which did not encourage me to try.

Eventually, we did manage to get her to walk very short distances but not until we had a few sunny days about ten days ago did I venture out with S, hoping to get her walking a bit further.  I was amazed as within a short distance S was walking as well as she has done for many,many months.  We walked for four days running.  The distances still weren't vast  -  the furthest we went (twice) was one and a half miles  -  but the benefits were  obvious.  Although S was involved in her 'conversations' throughout the walks, she was calmer when we got home, mostly sitting still quite quietly, and for the rest of the day her animated walking up and down in the house was much reduced.

Now I'm determined to try and keep it up.  Today we went out in quite windy conditions, but not a word of complaint from S.

Repetitive conversations

As is often the case, I've spent much of the day listening to S's increasingly repetitive conversations with her 'friends'.  Although what she says still usually makes a kind of sense, more nonsense words are creeping in. She'll scornfully correct someone who has got the name of one of the friends wrong, has said something that sounds a bit like the friend's name, maybe starting with a different initial letter.  Quite often the conversations become fairly angry but then they will, sometimes quite suddenly, become cheerful and very polite, 'Thank you, thank you very much indeed!'  She's also apparently learnt how to whistle.  She used to say that she never could whistle but now she often produces a long low whistle  -  it's part of the conversation but it's not quite clear what the purpose is.

It's not all bad.  If anything, her conversations immediately before she falls asleep are becoming more and more cheerful.  She chuckles and sings, or hums.  It's not a bad way to fall asleep for me, now that I've got used to it.

But I do find having to listen to the angry conversations very wearing.  However, I read an exchange on an Alzheimer's Society forum where someone was complaining about the repetitive conversations and someone else responded that she used to feel the same but now that her husband cannot talk at all, she feels rather differently.  I can still have some kind of conversation with S and I try hard to make the most of this.

A bit calmer, some things happening, a lot of things not

I hate to tempt fate but life has been a bit calmer recently and things that help to improve our situation are now starting to happen. Our local council's brokerage service put us in touch with a woman with over 30 years experience of working in dementia care homes.  When I met Pam to talk about employing her for a few hours a week to give me a regular break, she 'got the job' as soon as she said, 'There is no 'they'  -  everybody's different.'  I'm paying her for between 3 and 6 hours a week (depending on what else is happening that week) and trying to split the time between things I need to do  -  trying to reduce the chaos around our over-large house, sorting out out temperamental car and computer, shopping etc  -  and things I want to do  -  catching up with friends, writing, music etc.  It's amazing how quickly the hours can disappear but it's early days and I think I can get better at using the time.

We have also had a visit from an occupational therapist which was helpful though several of her suggestions seemed to me, and to the carer, to be unlikely to work with S.  More and more I realise that the support that we're now starting to unlock (though someone seems to keep changing the lock)  should have been suggested to us before S reached the stage she has.  For example, after what we both thought was a hopeful visit to the day centre, we now find that the one specific activity that was offered  -  an art session which was referred to and oversold as 'art therapy' but which might have interested S  -  now seems to be in doubt because the tutor 'is not dementia trained'!!!  One wonders what she is doing working in a dementia day centre in that case, why they haven't trained her and why the guy who runs the centre appears not to have known this when the original offer was made.  The suggestion now is that, even if as they originally suggested, S is accompanied by Pam (who we'd be paying) the art tutor may not be comfortable having S in the group.  So I'm wondering if the whole centre is being run on the basis of what's best (easiest) for the staff rather than the clients.

As a bit of a sop to us, the OT brought a box of paints, four sheets of paper and a couple of brushes so that Pam could try some painting with S at home.  S hasn't shown much interest yet but this has given Pam the idea that maybe they could try making pompoms which S might enjoy.  Although Pam is very good with S and they are definitely developing a relationship, it was clear from the start that she'd like to do more than just watch S  -  she keeps asking if there's anything else she can do  -  so if we can find things she can do with S this will be good all round.

No sign yet of my promised meeting with an admiral nurse, or the promised gab rails to help S down the front step, or any further interest from the psychiatrist to whom she is now allocated, nor a promised new psychological assessment, nor any concrete outcome from my carer's assessment.  So it's still mostly friends and family who have given their time and support to enable us to cope better.

Wouldn't it be helpful if .......

........everyone did what they said they would, when they said they would do it?  This week we have had an extraordinary series of diary changes.  It's not at all unusual to have a couple each week  -  I can cope with that  - but this was something different.

Monday:  We visited a day centre for people with young onset dementia.  The actual visit went smoothly (more of this later) but despite my emailing and trying to phone last Friday, I only got directions and a clear idea of the schedule by phoning first thing Monday morning despite a previous promise that everything I needed to know would be emailed to me in good time.  It was decided that full sessions would probably not suit S but an art therapy session on Fridays would be worth a try.  We agreed that I would take S back on Friday for this so that I could meet the woman who rums it and be on hand to help S or to keep an eye on her if she decided to walk about.  It was suggested that the following week I could use the carer we have been put in touch with to accompany S so that I could have  little respite.

Tuesday:  I asked the carer to do three (paid) hours on Tuesday so that I could take one of our two cats to the vet to be neutered.  We got a pair of Siamese cats (brothers) from a local animal rescue place because we thought they'd be good for S who's always loved animals. (it's still early days but it's clear that S is finding it more difficult to relate to them than we though she would though she is trying).  The cats were supposed to have been neutered but when I took them to the vets where this had supposedly been done  -  for injections  -  the vet who saw them (it's a large practice) said that one of them still had testicles.  This was duly reported to the rescue place.  I expected that they would sort out with the vets what had actually happened but a few days later they phoned and said could I get the cat neutered at their expense.  I explained that this was not so easy for me because of my carer role but agreed to do it, knowing that I would be using up some of my precious three hours a week.  When I got into the vets for the pre-op exam, the young intern from Romania who was dealing with the cat said he could not feel the testicles and thought the cat must have been 'done' after all (what about their record-keeping, you may well be thinking).  A more senior intern was brought in, who might or might not have done the original op, if it had indeed been done.  He didn't remember the cat so also played 'hunt the testicles' and finally declared that the cat must have been neutered.  In this course if this, I learned a lot more about the location of cats' testicles and the development of their scrotums than I'll ever need to know.

I took the cat back home and got on with some of the things I'd planned to do.  In the afternoon, Someone should have come to test S's eyes but there had been a phone call the day before to say that illness meant this would have to be postponed.

Wednesday:  The cleaning service, who are supposed to come after 12, turned up at 10 a.m.  I'd just finished getting S up and dressed but had not started on the tidying that I needed to do following a messy job that our wonderful decorator/handyman had done for us on Monday and Tuesday so I just had to leave the cleaners to do the best they could, knowing that they would have to spend time moving things around instead of  cleaning.  I phoned the agency and they made a note so that it shouldn't happen again  -  a note you might think they'd have made already.  In the afternoon S was due a reflexology session but her friend who does it phoned to say she was unwell.  This was disappointing as there was a break over Christmas and the last two sessions have never really got going as S seems to have forgotten how well she was doing with it previously.

The new home hairdresser phoned to say that she could not do 10.30 tomorrow as she was wanted in work early so would come after work at about 5.30.

Thursday:  We went and had lunch with my brother and sister-in-law.  They invite us once a week and cook us excellent food which S usually eats with gusto.  When we got back home there was an answerphone message from our young onset contact to say that the art therapy wasn't on this Friday, he'd been mistaken and not to come tomorrow.  Later on we were supposed to have a visit from the new hairdresser.  She phoned after the time she was due and said that she had been kept late at work but would be with us soon.  Nearly an hour later she phoned saying her SatNav wasn't working, she'd got lost and wanted directions.  By this time S's daughter had arrived to take her to see friends so we had to reschedule the hair wash a second time.

Friday:  Today we now have a free morning.  I may wash S's hair myself as some very good friends are coming over to visit this afternoon.  They had been coming this morning but we had to rearrange when the art session fell through and as it happened this suited them.

All this chopping and changing probably affects me more than S but it's interesting that over the last couple of months her standard response when I tell her that someone's going to visit is, 'No they're not!'  This week she's usually been right.

I think the thing is that this job is hard enough when everything goes according to plan.  A week like this just makes it that much harder.

Patronising professionals

You could fill a blog with them.  The latest one to use this particularly annoying example was a psychiatrist.  'And what tablets is she taking?'  We've had it all before: 'Do the tablets suit her?', 'Is she happy with her tablets?', 'There aren't any tablets that can help that'.  It's particularly inappropriate in S's case as she has the greatest difficulty in swallowing even the smallest tablets and either has to have medication in liquid form or crushed up.  What's wrong with 'drugs' or 'medication'?  I'm sure that this springs from an assumption that people with dementia, old people generally, and 'the masses' have to be talked down to and can only be expected to understand the simplest vocabulary.  Do they use 'tablets' in discussion with fellow professionals?  Of course not.

Also, there's an assumption that someone in S's position must be on a whole range of tablets.  Happily, she is currently pretty stable and may almost have shaken off the worst effects of the last 'tablet' she was persuaded to take.  I quite like the look of surprise, even shock, when I tell them that she's not on any medication.