Finding the positives, even in small things

I try to look for positives in our situation. I sometimes see them and then forget. So I'm trying to keep a bit of a record. I'm jotting them down in a notebook.

I'm not talking major events of course and some of them are only noteworthy because I used to take them for granted and they haven't happened for a while. But in the last week:

I've twice seen S mouthing the words to songs, one of which we were singing at one of our groups ('It's a long way to Tipperary') and one I had on in the the car and was singing along to myself ('Da Doo Ron Ron').

Twice she's picked up a piece of apple that I'd put in front of her and started to eat. For ages I've been handing her pieces of fruit on the assumption that that was the only way they would get to her mouth.

I was helping her up from the settee, holding her hand and saying 'Push up', when she said, as she did it, 'If I can...' (it was a bit of a joke  -  she knew she could).  This after God knows how long when I think I've only heard yes or no.

It would be very easy to list the negatives of course.  This is, for everyone, a disease that, over time, is only heading one way.  But it's good to remember that these positive things still happen.

A pleasure to post this

So often, I read or hear about negative attitudes to people with dementia. Follow this link to see a short video which gives the other side of the story:

Heartwarming Video

There was also, incidentally, a recent online discussion which showed the UK police in a very favourable light in terms of their dementia awareness and willingness to help (this at a time when the UK police are under a lot of pressure because of their failings in other areas).

Treasuring what you've still got

Someone was worrying online about her mother who wrote down the names of people in their family and her relationship to them.

I can understand the upset when the list was first discovered, but the positive way to view it is that it's good that she can still read and write and, even better, can reason that if she writes the names down this might help her to remember them.

Personally, I don't worry too much about names. My wife knows who I am (and will probably at some stage not know). She doesn't use my name. So what? She knows who the important people in her life are when she meets them and when I talk about them. These are the things that matter. 

She's not been able to write for a long time. I tried to help her retain the skills involved for as long as possible but it got too frustrating for both of us. I'm almost certain she can't read. At all. But I don't know for sure because when I understood how awful it was for her to be 'tested' (by anybody) I stopped testing her and asking her test-like questions.

One's expectations change. But the important thing is to try and make the most of what you've got - today. You might not have it tomorrow.

The best way to look at it is not 'What have we lost?' but 'What have we still got?'

New readers start here

As the blog is nearly one year old, it occurs to me that as new readers come along, it could be helpful to point them towards some significant posts that chart the perhaps unusual developments in my wife's condition.

This is one of the earliest posts:

http://adventureswithdementia.blogspot.co.uk/2011/10/slipping-away-from-me.html

This was one of the lowest points, though looking back, my anger probably helped me through this period:

http://adventureswithdementia.blogspot.co.uk/2011/11/dreadful-negative-experience.html

This was another awful time:

http://adventureswithdementia.blogspot.co.uk/2011/12/today-is-special-day.html

In the New Year, things started to improve:

http://adventureswithdementia.blogspot.co.uk/2012/01/bit-calmer-some-things-happening-lot-of.html

This was an interim 'progress report':

http://adventureswithdementia.blogspot.co.uk/2012/02/progress-report.html

I'll leave it at that for now, but post further selections on the near future.

It is of course possible to read any or all past posts by clinking the links at the bottom and right of the page. 

Another intriguing snatch of conversation

As I've mentioned previously, I fall asleep nearly every night to the sound of S talking to, and laughing with, her 'friends'. I am quite happy about this and it doesn't bother me really. Occasionally, I can't help 'tuning in' to what S is saying, even though I'm trying to get to sleep.

Last night when I was just about off, I was suddenly aware of this conversation: 'So is it good or bad?' (laughter) 'I don't know' (a gale of laughter) 'I think I'll go half and half!' (even louder laughter) and then...'Brilliant!'

I've no idea what she was talking about. But what does it matter if she's so happy?

More conversation

A couple of day ago, S announced, 'She's gone!'. I'm very familiar with this. Normally it's a good friend that's gone. S used to be inconsolable about this, insisting that the friend would not come back. It hasn't been such a problem recently, but I'm still alerted by the phrase as it has led to such agitation in the past.

However this time it went: 'She's gone! My friend....to Venice.....which is wonderful for her!' No upset, no agitation.

S loves Venice. Two years ago we went there together and we were near Venice this year though as it was in July and we knew it would be very hot and very crowded we gave it a miss.

This happens more often now. A conversation will start off sounding ominous and will develop in a way that suggests there will not be a happy ending. But then things turn around and end happily. The example here is the most concise version I've heard.

My favourite words of S's are probably: 'Exactly right!' and 'Brilliant!', both of which can conclude some saga of misunderstanding or hostility.

Are people with dementia capable of new learning?

Yes!

Despite the fact that it's often stated that they aren't, my own experience tells me different. During the course of S's illness she has had to adapt to all sorts of changes. Sometimes, this has proved more difficult than at other times, but new learning has certainly taken place. Several years ago, we bought a motorhome. We have travelled over 30000 miles in it and have recently returned from a trip to Italy. S has had to learn all kinds of things as a result from, as an example, how to get into it (you have to climb up, rather than lower yourself into your seat as you do with most cars) to how to get onto the bed  -  from one end rather than the side.

But forget about S. It had already occurred to me that when people go into care homes it takes them a while to 'settle in' but after a time they nearly always do. What is settling in but new learning  -  new people, new procedures, new routines, new furniture, new toilets etc, etc, etc?

I was therefore heartened to see that John Zeisel in his book 'I'm Still Here' makes exactly the same point. His example involves a resident who gets angry when someone sits in 'her chair'. Other residents know it is her chair and know what her response will be. They have learnt, just as she has, that it is her chair.

Of course, there will come a point when new learning may be hard to see or non existent.

But there is all the difference in the world between treating someone as incapable of learning anything new, and treating them as potentially open to learning from new experiences, like most other human beings.

I read on an online forum, 'as is well known, people with Alzheimer's are incapable of new learning'. Like many of these well known 'facts', this is actually another of the all too prevalent and damaging myths about the condition

A very good holiday

Regular readers of this blog will have noticed that I haven't posted in quite a while. There's nothing sinister about this. In fact, we've been on holiday. To Italy. We drove in our modest motorhome, covering around 2500 miles. There was a time last autumn when I was pretty certain that we would never go away on holiday again.

So it's been an amazing and memorable experience. I was prompted to consider this particular adventure by an invitation from my brother and sister-in-law to help them celebrate a significant birthday by meeting up with them and friends and family for a few days at a villa in Italy. S has improved so much over the last few months that I became increasingly sure that we could make it. It's been hard work at times, but that's just how life is now, wherever we are. In some ways things are simpler and more straightforward when we're staying in the van. S has spent many months living in it in the years since we bought it and usually remembers everything she needs to about how it all works.

Having both decided that we wanted to go, the best plan seemed to be to make a real holiday of it, not just try to race there and back, so we've also spent some 'rest days' at nice places we've visited before like Lake Garda and Lake Como. We've had some very long days on the road, not by design but because we hit some awful traffic and got lost a couple of times. So we have been 6 or 7 hours 'on the road' some days. This hasn't troubled S at all.

I've got a lot of sorting out to do now, but in due course I'll return to this experience. If you've read about how S was when I started this blog, you'll probably be as amazed as me at what we've done. And I do mean we. At times on holiday, S was as contented as I've seen her in years. But, like me, she's also glad to be home.

Beacons of hope

There will be people who come across this blog hoping to find some answers, and maybe some hope.

As anyone who cares for someone with dementia, or who has dementia will know, answers and hope are in short supply.

However, in my search, I have found some glimmers of hope  -  if not for S, then maybe for others who are just starting out on this journey. For new or irregular readers here are links to some stories and summaries which I have found interesting and, in some cases, inspiring.

Morris Friedell

Herpes       more     the research     a possible herpes vaccine
(It's worth noting that 'the research' is the most viewed post in the whole blog.)
Steve and Mary Newport

Centenarians

The nuns' study

Life on hold

On online forums carers, and not just carers for people with dementia, complain about their life 'being on hold'. It's pretty obvious really  -  life is never on hold. The sun rises and sets, you get a day older, your life goes on. What people are really saying, I guess, is that they are unable to live the life they would wish because of the circumstances they find themselves in. But this is a feeling that many, many people have, not just carers. You could say that it's part of the human condition, one of the things that makes us human even  -  it's not a problem your cat has.

It's more understandable maybe in carers than in whinging teens or workaholic thirty somethings who, in all likelihood, still have much of their life ahead of them (though we mustn't forget that people of all ages can have caring thrust upon them).

There's no solution of course  -  you're bound to feel like this at times. But if you try to carry on finding life interesting, even the difficulties that you're facing and possible ways of lessening them, and to get satisfaction from something that in more normal circumstances might pass unnoticed, like seeing the person you are caring for laugh (if they can) or actually completing a task on your mental 'to do' list.

And then of course there's music, friends, family, reading, memories..........

And that life that you could have been leading might not have turned out too well anyway.

Accentuate the positives

On the journey from mild cognitive impairment and on through various stages of dementia, discussions with professionals, at which patients are very often present, tend to focus on deficits. I have been very aware of this recently after help from an occupational therapist whose aim was to see what S can still do and how her skills can be developed and extended. She concentrated on putting socks on and teeth-cleaning though some of her observations and advice could be generalised to other activities. This was helpful, not only because she was pleasantly surprised at S's ability to respond to requests despite the distraction of her auditory hallucinations, but because S was receiving encouragement and a positive response. It made me realise that we haven't met many professionals who have been as positive. It is more usual for them to ask questions which highlight deficits and then to suggest to carer and patient that this is only to be expected. There's an underlying fatalism that doesn't escape S's notice.

I have always believed that people, whatever their age and condition, respond to other people's expectations so I can understand why some people with dementia would rather not see 'doctors'.

The message I take from all this is that it does no harm, and may do a lot of good, to concentrate on what people with dementia can do rather than what they can't.

The situation so far in summary

As more and more people are finding and reading this blog (thanks!) it seems appropriate to summarise briefly S's current situation. When I started this blog we were in a desperate state and receiving very little support, except that family and friends rallied round.

We're in a much better state now as, against all the odds, S has made something of a recovery from whatever was causing her dramatic decline in the autumn. This post sums up the improvements:  http://adventureswithdementia.blogspot.co.uk/2012/04/how-s-has-improved.html
whilst possible reasons for this improvement are discussed here: http://adventureswithdementia.blogspot.co.uk/2012/04/possible-explanations-for-ss.html

One of the scary things about this condition is that no-one knows what's round the corner so we (and I do mean we) are as determined as ever to carry on enjoying life as much as possible. We're planning a motorhome journey to Venice in July to celebrate my brother's 70th birthday. Wish us luck!

More good stuff

We bought a small motorhome in 2006 when I retired from full-time work. Since then we've used it extensively and travelled as far as Hungary and Italy. When S had her sudden decline in the autumn I thought we would never go away in the van again. 


Last week, with S's full agreement and approval, we went on a short motorhome trip to Snowdonia. S seemed to slip seamlessly into motorhome mode again and in fact the two nights were better than the last few times we used the van last year. We met up with family which helped but also spent several hours confined in the van by a series of showers. We successfully chilled out to our own music and the radio. When we got back home we both thought it had been a big success.


This week, we went to the dentist for check-ups which I thought would be very difficult. It wasn't at all. S got into the right position on the chair, opened her mouth wide enough for inspection and a scale and polish. The dentist is superb, which is a great help, but S was just amazing, actually much better than the last inspection over a year ago.


I keep reminding S how well these things went and she certainly understands that these are significant achievements, even though when we saw a speech and language specialist this week (more on this later) she was unable to say the names of her two daughters. 


As I suggested in the previous post, there's the person and then there's their cognitive abilities.

A person is more than their cognitive ability

It's obvious really, but this extract from a Gransnet Q & A with Professor Alistair Burns, the government's 'dementia tsar', explains with great force and clarity why a person-centred approach is vital when dealing with dementia  (and the same could probably be said of all mental health conditions).

A criticism of the focus on dementia is that it puts too much emphasis on what is lost (memory) and not enough on what endures.

This plays into ageism by creating the idea that life is a process of inevitable decline.

The obsession with cognitive ability - which is actually prevalent throughout life, from the classroom onwards - leads us to a very narrow view of human nature and how to age well.

Do you agree that stereotypes of dementia are creating the idea that cognitive ability inevitably falls away in middle age? And that this obsession makes it very difficult to respect the selfhood of older people?

How do we treat the disease while avoiding this negativity?

Dear bridgeofsighs,

You raise a very important point in terms of re-ordering the way in which we regard and treat people with dementia. While we do know that cognitive ability (predominantly memory) does decline with age, there is the assumption, which as you say is completely false, that dementia is part of normal ageing. This brings up the profound therapeutic nihilism to which you are referring and, as you say, can lead to a narrow view of human nature.

You raise the key point of selfhood of older people. In dementia we call that personhood and the preservation of personhood enshrined in person-centred care is a key aspect of improving the treatment of people with dementia.

In terms of your last question, about treating the disease while avoiding this negative view, our awareness campaigns - while directed at alerting people to the early signs and symptoms of dementia - will help in this regard. The honesty and openness of people like Sir Terry Pratchett in declaring his Alzheimer’s and how he is living well with dementia is also an important part of rebuffing this negativity.

Possible explanations for S's improvement

So how were the improvements achieved?

1) I realise now that S was probably just as shocked and distressed as I was when she had the awful and sudden decline. She didn't want to be the apparently helpless person that she seemed to be, so she made, and has continued to make, real efforts to respond to my suggestions, requests, and thoughts about what might help.

2) S got her appetite back, but we don't really know why. I had a lot of help from the dietician to whom we were referred. She advised forgetting everything I'd ever learnt about a healthy, balanced diet and to give S loads of calorie rich stuff  -  cream, butter, honey etc. It was hard and I had to keep reminding myself when looking at nutrition information that I wanted the calorie count to be as high as possible. Gradually she started to eat more. Breakfast and lunch were thick sandwiches, I tried to establish a sit-up evening meal  -  with some success  -  and presented all kinds of between meals snacks. My brother and sister-in-law invited us over once a week for a proper meal and the fact that S usually ate 'properly' there, with minimal help, was greatly encouraging. Gradually things began to improve and success bred success, old habits were re-established and I was eventually able to start reducing the cream, butter and calorie-rich snacks. She has now reached what is probably her ideal weight and our diet is gradually returning to normal.

I'd actually lost quite a lot of weight with the stress of the decline. It was quite pleasant to have a period of eating whatever I liked,, when I liked. Now I've got back to where I think I should be so neither of us really needs anything other than a normal healthy diet. We are maybe a little deficient on vegetables as S, despite being a non meat-eater, is not very keen on most vegetables. But we eat a lot of fruit and S drinks apple juice almost exclusively.

3) I've mentioned the benefits of walking previously. I'm still very impressed by the ease with which S manages to walk at a reasonable pace considering how she was back in the autumn. She talks non-stop and the 'conversation' is often more agitated than when she is at home but when she gets home after a walk there is usually a lengthy period of calm.

4) We're attempting to suppress the herpes virus with aciclovir (an anti-viral medication and the only medication she has taken for several months. There are several posts on the possible link between Alzheimer's and herpes so if you haven't read them already, just put 'herpes' into the search box at the top left. I was interested to learn that the manufacturers recommend a dosage for suppression of the virus and that this can be used for months or years. I originally thought it might be difficult to get a continuous supply form the GP, but he was very helpful. I feel that S has become more aware of other people since we started this treatment but it is hard to prove.

5) We were introduced to a wonderful woman whose working life has been spent in care homes. She's now retired and hadn't worked for a few years but for whatever reason decided to work as a carer for people with dementia. We employ her for between 3 and 6 hours a week. It's very good for me, having time for myself to do things I need and/or want to do. Sometimes I stay at home and keep out of the way. I've also met friends for lunch, been for bike rides, and gone shopping in a relatively relaxed way, amongst other things. This wouldn't be nearly so easy if I didn't have someone who so clearly had an immediate rapport with S and who clearly had the skills and personality to deal with any foreseeable difficulties. From what I can see, S is very relaxed in her company and is always calm and happy when I take over again. So we are both benefiting. 

6) Finally, for now, there are the groups and activities that we now attend. The Young Onset Centre proved a real let-down but eventually the admiral nurse and the occupational therapist between them pointed us in the direction of singing, social and music therapy groups. These are all quite challenging for S -  she is usually the most challenged participant by far  -  but, because she is essentially a very sociable person, she certainly appreciates that side of the activities. And other people are generally able to see past the unusual behaviour and appreciate her real personality. She has never shown the slightest reluctance to go to these groups, despite the fact that our schedule is somewhat more hectic now. 

P.S. One of the most important factors has been the help and support of S's daughters. One of them is 3 or 4 hours away and now has two young children but she is as supportive as possible. The other one, who lives locally, sees S several times a week and has a wonderfully relaxed attitude to what must at times be quite distressing behaviour from S. It's made an enormous difference to me to have someone who now knows more about S's problems and strengths than anyone else apart from me. I don't know what I would have done if she hadn't risen to the challenge so magnificently. I can talk to her about S from our shared experience and we have learned from each other. Other family members, from both sides, have done all that they can, as have many friends.

The fatalism of the experts

There is no such thing as remission in Alzheimer's, or so we are told. I saw a web Q & A with David Shenk, author of 'The Forgetting', a fascinating 'history' of the disease, and he said this in so many words. And you can find several other eminent professionals on the web saying the same thing.

Yet reading Shenk's own book I came across Morris Friedell. Shenk was obviously impressed with his abilities, in 1999, and it appears from his web presence that he is still going strong  -  and is in touch with other people who also seem to be holding the disease at bay. This is inspiring.

What increasingly depresses me about the experts (and actually Shenk is essentially a journalist so may have some excuse) is their fatalism about the disease. I think it must arise from the fact that this is so predominantly a disease of old age. Maybe there's an unspoken assumption that as they're soon going to die anyway, it doesn't really make a lot of difference that there's no remission, no cure  -  and precious little effective treatment. Whatever the reason, it would be good to see more attention paid to people like Friedell and what the experts who haven't experienced the disease themselves might learn from some brave spirits who have. We rightly admire and laud people who 'struggle' with terminal cancer, but people with dementia are seldom if ever talked about in the same way, even though many of them may really be doing themselves a great deal of good by refusing to accept that their fate is sealed.

How S has improved

I thought I'd summarise all the improvements in S's condition since her dramatic decline in the autumn, and list the things that could have helped to produce the improvement. There's absolutely no doubt that there has been a dramatic improvement  -  everyone who sees her now, including 'professionals', comments on the visible, and obvious, signs. She still has some days when things aren't as good as usual  -  she can still have sudden outbursts of aggression or sobbing, caused by frustration, but are very much briefer than they were during the worst times.

In no particular order of significance:

1) It's now possible to get S's more or less immediate attention when I need to. Even when she's very agitated and distracted, if I wait a minute or so and try again, we're usually successful.

2) Food and drink are hardly an issue now. When S lost so much weight  -  she was well below 8 stone and it was still falling  -  my attempts to get her to eat and drink dominated our days and caused great stress to us both. Now she has regained most of the weight she lost and has a good appetite. I no longer have to worry at all about nutrition.

3) At the depth of the autumn decline it was incredibly hard to get S into the bath. She hated it and seemed to have no idea how to get in or out. Two of us had to more or less lift her in and out  -  with little or no co-operation from her. Now I help her bathe almost every day. She steps in and out, just holding my hand and/or the wash basin for support. I think she gets to her feet from a sitting position more easily than I do! And I'm a pretty fit 67 year old!

4) Previously when I handed her her glasses she would often grab my hand rather than the glasses. She rarely does now. Similarly, when she got into bed it was very hard to get her head on the pillow  -  she would end up too high or too low in the bed and I would have to physically move her up or down, something she often resisted. Now she either gets it right first time or responds to instructions to move up or down without protest.

5) During the bad spell, she frequently referred to herself in the third person. I found this quite disturbing. She doesn't do this now.

6) S will now sit calm and still for longish periods, even when nothing much is happening.

7) She used to be incredibly sensitive to touch and would complain 'that hurts' almost whenever you touched her. She is still more sensitive than she used to be, but not nearly as sensitive as she was during the bad spell.

8) Radio and TV programmes will grab her attention, sometimes briefly but often for longer. She will often comment appropriately about something on the news. She follows many of the jokes on '10 o'clock Live'.
She never quite lost this in the autumn but it's become a lot more common now.

9) She is far more aware of other people, and will greet them appropriately and respond when they speak to her. She went through a period when she completely ignored other people.

I've probably missed a few of the improvements and will continue to revisit this topic as appropriate.

The things that may have helped to bring about these improvements probably warrant a separate post.

A Herpes Vaccine may help

If, as seems at least possible, the Herpes Simplex virus is either a cause of, or a contributory factor in, the development of Alzheimer's disease in people carrying a particular gene (the research is summarised here), then the vaccine against Herpes Simplex (discussed here) offers some hope for these people. 

They should have seen her a few months ago

No doubt many people meeting/seeing S for the first time view her as someone with severe mental health problems. I've got used to our walking being constantly accompanied by her seemingly endless stream of conversation with her 'friends', much of it loud and agitated, but I can imagine that some of the people we pass find it unsettling. They would have found her behaviour even more disturbing a while ago.

On a bus, I'm even more 'on edge' about it. But it's encouraging that I can get her to reduce the volume when I feel it's getting anti-social. During the course of two bus journeys today, when she was talking  -  there were significant periods of silence  -  it was done so quietly that I doubt whether anyone noticed anything unusual. And this was without any intervention from me. So this is another thing that has improved.

Happily, it's not just me who sees improvements  -  I would start to doubt myself if it was. It's becoming very noticeable how everyone, including experienced professionals, who saw S back in the late autumn when she was going through the most difficult time, express surprise bordering on amazement when they see her now. People mention her calmness, her happiness, the fact that she looks so much healthier now that she regained some of the weight she lost and the fact that she clearly follows conversations much better, even though she often has difficulty making herself understood when she tries to participate.

Of course, everyone would like to know how this has been achieved. Join the club!

Naturally, I do have some ideas about this. I've mentioned some of them here. I'll try to pull all these ideas together in one post very soon.

Meeting an Admiral Nurse

Admiral Nurses are dedicated to helping dementia sufferers, and particularly their carers, in the same way that Macmillan nurses work with people who have cancer. I'd been promised, by our Care Co-ordinator (from the Young Onset Service) that I would be able to have regular meetings with an Admiral Nurse. I felt this could be a great help to me as they obviously have an enormous amount of knowledge and experience and are also trained counsellors. Incidentally, this is one advantage of living in a metropolitan area  -  whole swathes of the population do not have access to Admiral Nurses. Scandalously, there are (according to the dementia UK website) only eighty five Admiral Nurses nationwide and they tend to be concentrated in a few places. However, anyone reading this who thinks they would benefit from a conversation with an Admiral Nurse can try calling 0845 257 9406 or can email: emaildirect@dementiauk.org.

I found the meeting very helpful. Some weeks ago I was aware of being so stressed that I went to the GP about it. He referred me for counselling so I also, eventually, have that as an option. But I think the AN who is a good listener and does not claim to 'know it all', who avoids generalisations and who appears to know a lot about various projects and groups in the area which might be helpful to S is going to be a great asset to me, and therefore to S -  their philosophy is to work with the carer in order to help both the carer and the person being cared for.

After the disappointments of the Young Onset Service, this could be a real boost.