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:

http://www.epilepsy.com/learn/types-seizures

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:

https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2599&_ga=1.208937239.428393088.1433590610

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:

http://www.bma.org.uk/support-at-work/gp-practices/service-provision/prescribing/focus-on-anticipatory-prescribing-for-end-of-life-care

Sunday, 1 May 2016

Share the Orange

This video is self-explanatory:


Alzheimer’s Is Not Normal Aging — And We Can Cure It

I thought this was worth posting. He says some interesting things but it's a bit of an anti-climax when you realise that, as with so many new ideas that are discussed, there's still a long, long way to go. The images shown from 3.05 are very powerful:

Wednesday, 27 April 2016

Another fit

When I went to get S into a position so that I could give her her breakfast yesterday morning she winced and clutched the top of the arm that she had probably been sleeping on and then almost immediately went rigid. I got her into the recovery position quickly. She was breathing noisily through her nose. I tried hard to see if her tongue was obstructing her throat but her teeth were clamped tightly together. All S's fits have lasted longer than most I've read about but when it got up to 10 mins I decided it was time to try the Buccolam medication which you squirt inside the cheek. I did this at about 11 or 12 mins. It was easier to squeeze than I thought and all went in on one side with some coming out and there was some choking that quickly subsided.

What I hadn't realised was that it's a sedative - the GP told me this when I phoned after I'd given it - so it was difficult to know initially whether/when the fit had morphed into a pretty deep sleep. She eventually did sleep for a long time. I told him the GP that the oxymeter was showing fluctuations and was mostly in the low nineties which I'd read was a cause for concern but he was happy that it hadn't gone below 90. I'd managed to contact a friend of S's who lives a few streets away and who has given me her number for this purpose. She came round fairly promptly and it was a great help having her there. I phoned the GP again and was reassured that the sleeping was OK - I even got him to listen to her breathing.

Daughter and baby came later and this was also a great help. Things returned to somethings like normal. The only after-effect seemed to be extreme tiredness. She ate and drank and used the commode as normal. We also had a couple of smiles. I think she slept pretty well and had her breakfast as normal so I'm hoping we'll get her to our 'Singing for the Brain' group this afternoon.

But these things are scary when you're on your own.....

Saturday, 23 April 2016

The recent drop in the number of people developing dementia

It has recently become clear that in the UK dementia has fallen by a fifth over the past 20 years. This is possibly down to lifestyle and education changes. If so this highlights the potential benefits of preventative action:


However a letter published in the Guardian suggests another possible reason for the reduction:


I think most people know what a healthy lifestyle involves and it obviously makes sense to try to live healthily. However it is important to realise that there can be no guarantee that a healthy lifestyle will stop the development of dementia in an individual case. And therefore the fact that some people who live a healthy life still develop dementia should not discourage people from taking the steps that may well improve their chances of avoiding dementia.

Saturday, 9 April 2016

Reasons for getting a diagnosis

I have always been somewhat somewhat sceptical about the push for more people to get an early diagnosis and I've posted about this before. It took a long time for S's diagnosis to be arrived at, more than a decade. We knew fairly early on that she probably had some form of dementia but nothing more specific.

I know some people and their carers deliberately avoid diagnosis and I can understand this.

However, there are some arguments for seeking a diagnosis:

1) There are drugs available which might help (they may not though and may have side-effects). And some forms of dementia do not really respond to any medication.

2) A diagnosis ought to give you access to a lot of valuable support. But people often report that this desirable result is not forthcoming.

3) Blood tests might show that dementia-like symptoms may be caused by a number of conditions which can often be cured or kept at bay: