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:

Thursday, 24 March 2016

Music on the Brain

I am very grateful to a member of the Alzheimer's Society's 'Talking Point' forum for posting a link to this very interesting video:

Tuesday, 22 March 2016

Memory retrieval, not storage, hinders mouse models of Alzheimer’s

I found this report on a research project very interesting:

All the usual caveats apply, of course  -  many years before this knowledge could lead to a treatment, probably doesn't apply to all dementia, etc. But I've always felt that S's most significant problem as the dementia progressed was retrieval of memories rather than storage. I felt many times that the memory was still in there somewhere and occasionally its retrieval could be 'triggered' by an event, what someone else said, a picture, music.....

Tuesday, 15 March 2016

Alzheimer’s disease could be caused by herpes virus, warn experts

Link to an article in the Daily Telegraph:

Regular readers of the blog will know that the herpes virus HSV-1 has been linked to Alzheimer's Disease by several research studies. There are a number of posts that discuss this. Please enter 'herpes' in the search box (top left) to find these posts.

Interestingly, google shows a link to several other major diseases such as MS and type 2 diabetes. 

Monday, 14 March 2016

End-of-life care

The British Medical Association has produced a report which addresses some important issues and prompts some questions about how people approaching the end of their lives should be treated. These issues are often of great concern to the carers of such people:

Tuesday, 1 March 2016

The loss of abilities

This post was prompted by someone mentioning online that her husband is only able to blow his nose intermittently which is, of course, very frustrating.  But it seems to me that this is the way that abilities mostly disappear - gradually. S hasn't been able to blow her nose for ages and prior to losing the ability it was very much hit or miss as it was also with, for example, spitting out teeth cleaning water or successfully negotiating stairs. I suppose at least when it starts to happen you can look at ways to compensate for the loss (if they exist!). So when the stairs are increasingly difficult it's time to look at stairlifts or moving downstairs. When an ability disappears suddenly it can be devastating. Following S's first fit she effectively lost her mobility in 48 hours and it has taken me months to accept this.

However abilities disappear, it's always a sad reminder of what else is to come. So I think it's all the more important to celebrate things that can still be done. For ten days or so, S has been more vocal than she has for many months. She's not making any sense but it's still somehow good to hear. Her first sounds this morning were "I know!" followed by made up words and unintelligible sounds. I haven't heard her say very much that makes sense apart from 'yes' 'no' or 'thank you' for a long time so it was quite a good way to start the day

Thursday, 18 February 2016

A problem with research

There are daily reports of dementia-related research. A recent study, reported by Reuters Health (and others no doubt) suggests that 'repeated use of a certain class of drugs for gastric reflux or peptic ulcers was linked with a higher risk for dementia among patients in Germany'.

I'm interested in this as I've been on Lansoprazole or Prevacid (one of the drugs mentioned) for several years, though rarely on a large dose. After a period of only taking it when I really felt discomfort I recently decided to try and manage without it. Purely coincidentally I also cut right back on milk after I came across Oatly products and liked them. After a couple of months I have had very few problems with acid reflux. (I have also drunk fresh lemon juice first thing in the morning for several years and found that that helps, by the way.)

But Google reveals that lansoprazole allegedly lowers blood pressure.......and raises it! Maybe there'll be research along soon suggesting that it protects against dementia.

It seems that, as some people in the UK used to say (perhaps they still do)  'you pays your money and you takes your choice'.

Sunday, 14 February 2016

The importance of diet

The more I read and about and experience the effects of various diets on people with dementia, the more it seems to me that every person with dementia (every person, come to that) really needs a diet to be arrived at, by knowledge of them and by experimentation, that meets their particular needs. Their particular dietary regime then needs to be followed consistently. In certain cases, where someone has dementia involving, for example faecal incontinence, or has an additional diagnosed disease, the consequences of not getting the right diet are potentially serious.

What are the chances of the diet being consistently observed in any Care Home or hospital?

Another reason, if you are caring for a family member, for looking after them at home for as long as you possible can.

The NHS Continuing Health Care Process

This should be helpful to anyone in the UK who is trying to obtain National Health Service Continuing Health Care Funding. The link below will take you to a booklet which includes a lot of information about the CHC Process and I think the Flow Chart at the beginning is particularly good:

Tuesday, 9 February 2016

Fit number 3

S had another fit today. Our carer had not been here long and was feeding S her lunch. I was in the kitchen when the carer called me to come quickly. I went straight in and it was just like the last fit. We lowered the bed and got her into the recovery position. There was a small bit of regurgitated fruit that came out and the dreadful-sounding gurgling breathing. The carer asked if we should phone for an ambulance but I reminded her that the GP said, after the last fit, that we call the surgery and he or the other partner would come as soon as they could. So rather than ringing 999 we decided to hold on. The surgery was closed for lunch so we couldn't call for 15 mins.

The fit subsided after about 8 mins though it's difficult to be exact as she was fairly passive during and after and the breathing gradually sounded a bit more normal as she seemed to drift onto quite a deep sleep. I was able to use the oxymeter and found the level was normal, at 97, even during the fit. This was a bit of a relief. Temperature was also normal.

At bang on 2 when the surgery opened, I phoned and got straight through! The receptionist talked to the GP on the phone and eventually came back with the message that he would call round in about 30 mins.

When he came S was pretty much back to normal, though tired. He did her BP and listened to her chest - no problems. We discussed whether she should be on an anticonvulsant and he thought that as all three fits had happened at similar times and she is nearly always on the hospital bed or in the wheelchair, comparatively safe, it was probably better to avoid the possibility of complications with other meds, at least for the time being. Fine by me.

So all in all, much less traumatic and tedious than the ambulance trips to A and E for the day, yet the same positive news that we would have got there. I would do the same again unless the oxygen level was a concern.

It's still very scary - particularly for the carers who hasn't seen Sue have a fit before - but I'm glad we held our nerve.

S soon ate the rest of her lunch quite happily and is, as far as we can see, back to normal.