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.

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:

http://www.theguardian.com/society/2016/mar/14/doctors-may-treat-dying-patients-for-too-long-finds-bma-report

Message in a Bottle Project

http://www.lions105ea.com/specialist_officer/miab.html

This looks like a useful idea for people living with dementia and their carers. In fact many people might find it interesting as, 'whilst it is focused on the more vulnerable people in our community, anyone can have an accident at home, so this scheme can benefit anyone, including you.'

A very sad lament from a carer

This is the text of a letter that appeared in the Guardian:

Is it true that if re-elected the Tories are considering cuts for carers? I ruined my physical and mental health by being a carer for elderly/infirm parents who were not coping in their council flat and dreaded the thought of a nursing home. I also ruined my financial health. They came to live in my terraced home. I was already a carer for my disabled son, so that made three. Eventually I had to give up my job and career because caring became a 24/7 job. They were with me for 17 years until their death in their 90s but I was never eligible for carer’s allowance. What a mug! Years ago when I was working I heard a businessman saying that he could not accept his elderly mum into his home as “my son, Nigel, needs the 2 spare rooms for his studies”. At the time I thought “how selfish” but years later I was not so sure.If carers get cuts in allowances, do not be a mug like me. Refuse to be a carer. You are important too, so don’t lose your identity. What am I saying? At the age of 88 (89 if I live until November) I’m still the sole carer for my son and, of course, will carry on as long as I can.
Barbara MacArthur

If anyone out there needs dementia help

It occurs to me that it might be useful to post links to two extremely valuable sources of help and support which I may have mentioned before. These particular links will be of use to English readers only.

Admiral Nurses are mental health nurses specialising in dementia. Admiral Nurses work with family carers and people with dementia, in the community and other settings. Read more here:

http://www.dementiauk.org/what-we-do/admiral-nurses/

Towards the bottom of the page there's a link to a direct phoneline number in case you don't have Admiral Nurses based near you.

The Alzheimer's Society can also be very helpful.  This link will help you find your nearest branch:

http://alzheimers.org.uk/localinfo

Back to normal

Regular readers will have seen that I have not posted on the blog since November. This is because, in addition to all the usual Christmas and New Year stuff, I have been rather preoccupied with a health issue of my own.  It has now been resolved, I'm glad to say.  But it has been hard to concentrate on my normal activities.  As you may imagine, dealing with this kind of thing is that much more taxing when someone is dependent on you.

And this experience has brought home to me just how dependent on me S is. A health problem that could mean a stay in hospital is a nightmare for a carer. As there was a realistic possibility that I would need in-patient treatment, I have had to think about what arrangements would be needed in such a case and how these might affect S.  Whichever way I looked at it, it was be very complicated and none of the possible scenarios would have been, it seemed to me, without risk to her present and future well-being.

I am now hoping that I can gradually build on the information I've gathered so that, if I'm in the same situation again, I will at least feel better prepared.

Anyway, normal service has now been resumed.

Rehabilitation

Many people will scoff at the idea that rehabilitation of dementia patients is possible.  I think we can all agree that 'restoring' a person to their pre-dementia state is currently impossible and likely to remain so for a very long time.

In any case, recent publicity suggests that, even non-dementia conditions like brain injury and stroke where people are sometimes helped to regain and, in some cases, all of the abilities they have lost, those professionals who are 'caring' for them are sometimes untrained in the techniques of rehabilitation.  It seems that some people who could and should be rehabilitated are left alone, to decline further:

Secret filming highlights poor care of brain injury victims

So it's no wonder that those whose responsibility is to care for and treat people with dementia sometimes seem to do very little even to help ameliorate physical symptoms which may or may not be a direct result of the dementia.  I have been reading online accounts of carers who have removed their partners from care homes and achieved surprising physical improvements which are clearly good in themselves but which may also have a knock-on effect in terms of the dementia.

One such carer is writing a book about his experience.  He has 'before and after' photos which clearly show a dramatic improvements in his wife.  If he is able to find a publisher, his book deserves to be a best-seller.

What people with dementia really want

People with dementia and their family carers say (National Dementia Declaration) that they want to see the following outcomes in their lives:
I have personal choice and control or influence over decisions about me
I know that services are designed around me and my needs
I have support that helps me live my life
I have the knowledge and know-how to get what I need
I live in an enabling and supportive environment where I feel valued and understood
I have a sense of belonging and of being a valued part of family, community and civic life
I know there is research going on which delivers a better life for me now and hope for the future. 

If you really accept this, then much of what passes as advice to people who care for people with dementia is seen to be deeply flawed.