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:

How to create an invalid

I am very disturbed by the way things are going following S's fit. Already, less than three weeks since it happened, she is being treated like an invalid. No serious attempt to discover why she has practically lost her mobility has been made. It took two weeks and a very determined District Nurse to get her x-rays which have finally ruled out any fractures to the hips or pelvis. The District Nurse's  intention then was that S should receive intensive help from physiotherapists to try and recover at least some of the mobility that she had before the fit when she was capable of walking 5 miles a week. But no-one is really interested in doing this. It seems to me that this is a result of the widespread if unspoken assumption that there is no point in wasting resources on someone with dementia.

We now have two daily visits from pairs of 'carers' who are not seeing an individual person who still has some abilities but a body that is incapable of doing most things. The less S has to move or be moved the better, as far as they are concerned. There is talk of hoists, hospital beds and commodes which she can be wheeled around on. Because they are now involved, I can see that, even though we will soon regain access to two bathrooms (a new one we are having put in downstairs and the original one via a stair-lift) the regime of  minimal movement and bed baths will be hard to move on from. Ironically, I'm still the one who has to do any lifting and moving because we do not have the 'right equipment' yet.

An assessment by someone who gave no evidence of having any particular expertise resulted in a decision, it seems, that the mobility issue was probably a result of what was going on in the brain  -  now there's a surprise  -  rather than any physical problems with parts of the body. The conclusion was therefore that physiotherapy would not help. But, of course, as everybody should know, the brain and the body are intimately interconnected and it's quite possible that repeated physical activity of any kind could help to restore some of the previous connections that may have been damaged. One of the things that perplexes me and the district nurse is that after the fit S was able to use stairs and the loss of mobility occurred in the evening of the day after the fit. No-one can explain this, and, worse, no-one is remotely interested.

Once before, with my help, my brave and determined wife re-emerged from a total meltdown, which also involved mobility  -  in addition to extreme agitation and aggression, paranoia, and torment  -  to become again a person who in her own ways got something out of life and was as physically active as she was able to be. I want to try and help her to do something like that again. But 'they' seem bent on creating an invalid. That is their expertise. And what an appropriate word that is, by the way. It's no wonder that they stopped using it. It gives the game away.

Looks like a great resource for HSV1 and Alzheimer's

I recently came across this:

http://www.alzforum.org/res/for/journal/detail.asp?liveID=188

It interests me greatly and not just because there is a lot of detail (I've barely scratched the surface) about the link between herpes simplex and Alzheimer's (a link that was first looked at in the 1970's).  I'm also intrigued that what is clearly a reputable Alzheimer's Research site is taking the growing body of research in this area seriously.

I simply cannot understand why the comparable bodies in the UK are neglecting this research.  I think it's scandalous.

Rebooting

I think it's quite well-known that people with dementia can be quite sensitive to transitions  -  for example, a visitor arriving or leaving.  So sometimes when the person's mood suddenly changes, for better or worse, you can look for any change that has recently taken place.

I've realised that this can be used to advantage.  S was particularly restless one night and I asked her if she needed the toilet.  She is, fortunately, prepared, almost always, to see if she needs the toilet.  On this occasion, it turned out that she didn't, but once she had settled back into bed her mood had changed and I was able to fall asleep to her usual happy 'conversations'.

It's as if a change is rebooting the brain.

When she is noticeably happy, I try to avoid much change so as to prolong that state.

Thought for today

Or any day:

We take note of all the details of a disease and yet make no account of the marvels of health.
                                                                        
                                                                                             Maria Montessori

Quoted by John Zeisel in 'I'm Still Here'

The more we discover about the workings of the human brain, the more miraculous it appears. Even a brain damaged by disease is capable of amazing things.