Monday, 11 July 2016

Brexit Could Threaten Neurodegenerative Disease Research in Europe

The respected US-based Alzforum (Working for a cure) has some thoughts on the potential effects on research of 'Brexit' (the decision by the UK to leave the European Union):

Saturday, 2 July 2016

Sometimes you get nice surprises

Some months ago, I got out our Yamaha keyboard (quite a sophisticated one left here by my younger son Joe) at our care/PS's suggestion. We wanted to see if S would 'play' it. Early attempts were not promising and we didn't really persevere.

Earlier on this week I started making a list of the various ideas we have tried by way of 'activities' for S, as getting her outside is usually very stimulating for her but recent uncertain weather has made this difficult.

We decided to try the keyboard. It was amazing. She sat in front of it and played around for at least an hour and a half. We helped a bit for the first 5 minutes and then we left her to it. At first she was hitting several notes simultaneously but soon concentrated on single notes, leaving regular pauses. The effect was rather like the kind of musical sounds that might be used for a meditation tape or video. It was quite relaxing. The keyboard has many different voices and we had set one that sounded like this anyway but the pauses she left between the notes she played added to the effect. I should say that she has never learnt to play a piano or any other musical instrument.

I would never have believed that such an activity would have lasted so long. Truly a revelation and we decided to see if this can become a regular activity. She has had another session two days later. Her daughter and an old family friend were equally amazed.

It's very easy, when so many attempts to engage a person have proved fruitless, to stop trying. This is a reminder that we should never do that.

Wednesday, 29 June 2016

Incontinence bedpads

An earlier post (16/12/15) discusses incontinence pads and pants. But as even the best of these are by no means foolproof, many people also use washable or disposable bedpads which can go between sheets and the bed user. These are often referred to as 'Kylies' (actually a brand name). I used to use washable ones until I found disposables that do a very good job of keeping sheets dry and have 'wings' which help to keep them in place. They are Attends Cover-Dri Plus 80 x 170cm and they come in packs of 30. Prices vary so you need to shop around online. I think they are good value, bearing in mind that you will be spending money every time you wash and dry a washable Kylie. Attends and other firms make various sizes of disposable pads but these are the only ones I've found that stay in place (because of the wings).

Tuesday, 28 June 2016

What kind of fits?

I haven't blogged much recently. I seem to be spending more time checking up on S when I'm alone here and she is resting or sleeping. When the PAs are here, I still spend a lot of time with S.

I'm still very concerned about the 'seizures/fits', particularly their length and apparently increasing frequency. This morning I've found this very interesting website which seems to describe every known type of seizure:

What happens to S doesn't come close to matching any of the detailed descriptions on this site. Also, I haven't searched exhaustively but all the duration times mentioned are much less than the 10-12 minutes which S's events seem to have lasted, though as the event seems to gradually morph into very deep sleep it's difficult to be sure. It's all very perplexing.

Another thing I've picked up from the site is the possibility that Omega 3/oily fish may help reduce the number and duration of seizures. This may be worth trying even bearing in mind the possibility that these are not epileptic seizures

Saturday, 11 June 2016

Fit number 5

S had another fit today - the fifth, I think. This time I hadn't even got her up. I was upstairs on the exercise bike and I always have the baby monitor attached to the handlebars. I was suddenly aware that S was making the horrible gargling which I now know means 'fit'. Straight downstairs and no doubt about it. As I have her sleeping in what is just about the recovery position there wasn't much to be done. I felt a little calmer than the last time but it's always horrible being on your own. I tried a few calls to people who might have been available. The first few weren't, but eventually I had a friend, a Carer/PA who was due later and came straight round and S's daughter plus husband and kids. By the time the first of them arrived, things were definitely on the mend and S was in a deep sleep. Every so often there was a bit of drool from her mouth including a faint trace of blood which I reckon was probably because she'd bitten her tongue slightly. After about 12 minutes I gave her the Buccolam spray (prescribed sedative) but not the whole syringe full as she coughed a bit as I squirted it onto her inner cheek.

Don't know how long she slept but she had her first drink not much later than she usually has it (around 10 a.m.) followed by pretty much normal breakfast.

S's daughter and family stayed right into early p.m. and daughter has said to call her straight away if there are any further problems.

There's been some progress in dealing with the fits in a way. After each of the first two we spent most of the day at A & E and weren't much the wiser after all the testing. Following fit 3 we phoned the surgery as the GP had suggested and he came round shortly after. During fit 4 we were able to talk to him on the phone. This time we couldn't even do that because of the weekend but I'm not really worried. Hopefully, we'll have 3 or 4 months before the next one.

Thursday, 9 June 2016

Anniversary of the first fit

A year ago yesterday S had her first fit. I've just looked back at what I wrote during the first few days after the fit and I sound pretty hopeful that S would walk again. Several thoughts occur to me about this now. One is that if we had not been so let down by physios she could have managed to walk again - after a fashion and never without support. But I also see now that her walking was becoming more and more erratic in the weeks leading up to the fit and it's very likely that, even without the fit, we would probably have been in a a very similar situation regarding walking as we are now. In fact, S can take a few paces with support and we get her doing this at least once a week She is always keen to do it and I'm sure it does her good in a number of ways. It also makes me think that, in the event of a fire, we could stagger to and out of the front door which is only a couple of metres from the bedroom door.

I also realise that had we not had the crisis a year ago we may have struggled on with the fairly modest level of help we had (6 hours a week) for much longer and that situation could easily have led to more potentially serious falls. It's also unlikely that we would ever have met the wonderful carer K and our other very good carer who have made such a difference to both our lives. And, of course, it's quite possible that, although we would have had to get more help eventually we would not now have nearly as much as we do.

Finally, it's important for me to keep reminding myself that S is not essentially different from how she was just before the fit a year ago and she is actually better cared for now than she was then.

Sunday, 29 May 2016

The essence of the person

Some time ago now, a neighbour was asking after S and I tried to explain that, even though she can hardly speak or do much for herself she is still, demonstrably, S. The neighbour, who has had some experience of dementia said, 'The essence of S is still there!' This summed-up the situation so well that I was overcome with emotion and had to end the conversation.

I realise that we are very lucky in this respect. Some people with dementia turn into a completely different person who may be aggressive and spiteful where they were once friendly and caring, for example. Others may become such a shadow of their former selves that they are barely recognisable even to their loved ones. Some may reach a stage where they do not recognise their loved ones and may become suspicious and wonder why a stranger is in their house.

But S is still very clearly there. She still smiles a lot as she has always done (except for a brief period of about 3 or 4 months when she was tormented and paranoid). She still does her best to be helpful when she is being moved around from commode to bed to wheelchair or 'rolled' from one side to the other whilst being dressed. She still mouths the words to some of her favourites songs when we go to our weekly 'Singing for the Brain' and occasionally actually sings some words softly.

It wasn't so long ago that she clasped a carer's hand after something that had been done for her and said 'Thank you'.

She still understands a good deal of what is said to her, providing she is not too distracted by what is going on in her brain.

Most encouragingly, whenever we help her to stand and take a few paces (with a good deal of support) the determination she shows is unmistakeable.

She was always a quietly determined person  -  it's part of her essence.

Sunday, 22 May 2016

The way the media portray dementia

We need a balanced view of dementia from the media. The smiley grey-haired little old lady and her smiley carer should share the billing with the tormented, paranoid, and violently aggressive person.

We need an understanding that, whilst some people suffering with dementia do die a horrible death others pass away peacefully.

We need it made clear whether they are talking about dementia (a condition which can have many causes) or Alzheimer's (which is now an umbrella term for a growing number of diseases).

In fact we need, and the media should help with this too, to put the word 'Alzheimer's' into the dustbin of history where it belongs, as an outdated description of lots of different diseases. Dr Alzheimer discovered a lot about a specific case of a disease affecting a person in middle age and I'm sure he would be amazed to learn that his name is used as to cover so many different diseases and, often, as a synonym for dementia, which is not a disease but a condition caused by many different diseases. No wonder people are confused about things when the name is used so lazily and ignorantly.

Perhaps most importantly, what cannot be overemphasised is that everyone is different and no two people with dementia have the same journey, though there will always be some similarities between them and  a lot of other people and reading about how other people and their carers are dealing with the issues as they arise can be tremendously helpful.

(We are coming to the end of Dementia Awareness Week in the UK and this post was prompted by some of the media coverage.)

Thursday, 5 May 2016

NHS double standard for people with dementia in care homes

Thanks are due to the Alzheimer's Society for bringing to light what might well be described as a scandal:

Whether anything will change as a result of this revelation remains to be seen.

Tuesday, 3 May 2016

'Just in Case' medication

People with dementia, as well as many other people, are sometimes prescribed 'just in case' medication packs as they approach the end of their lives. The general idea is that appropriate medications should be available to those who are caring for the person approaching the end of their life when they are needed rather than when the surgery or pharmacy may be open.

The BMA have published a very useful paper about this:

Sunday, 1 May 2016