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!'