Feeling like s creaming

I changed the title of the blog again today to 'demented life' because the phrase could apply to both Edna and myself - because my life has become fairly demented at times since this diagnosis was made.

Today I am concerned about both practical and philosophical issues.

The practical issues are she has pulled round from yesterdays very low point. I almost felt I would be going in to sit the deathwatch today - especially as all the nurses would say over the phone is that she was comfortable. But when I got there she was awake, quite alert - but out to play with the fairies most of the time. At one point she was complaining about me to me in the third person- telling me all about what 'Sally' was like and how she wouldn't get the shopping Edna wanted' But I think most of the time she knew who I was. But she was still constantly fiddling with things, and couldn't even work lout how to drink from her beaker at one point. In some way she has reverted back to infant status - and it is horrible.

The philosophical issues are tough. I asked the nurse (while I was on the way out) what odds she would give of Edna surviving this. ' Oh quite good as long as long as she starts to eat and drink' was the reply.

Now why I feel like acreaming is that I then tried to get across to the nurse that she isn't going to start eating and drinking enough. She hasn't been eating and drinking enough for over a year now. But when I tried to explain the problem how Edna hates being dependent on other people and and really doesnt want to live unless she can be independent all she said was ' A lot of old people are like that' I dont think she heard me at all.

So if eating and drinking is the key how far will they go to ensure her intake is sufficient? I'm guessing nasogastric feeding may come in. If they want to do that they will need consent. They probably wont ask Edna - which leaves me with a dilemma. But as Steve pointed out at least they will have to keep her in hospital if she has n/g feeding.

That also raises the whole thorny issue of whether they should resus her. Based on what the nurse said I am fairly sure the idea of her being marked as DNR wont be on their agenda. If I rasie it i look like an uncaring relative trying to get rid of tricky problem by letting her die because I can't be bothered.

Steve wants us to make an appointmnet with the consultant to discuss the issue and he will come along. He has no doubts - but I can see the ethical issues involved on both sides.


It is so easy to regard a person with dementia as just the dementia. What I am trying to keep at forfront of my mind is that Edna is STILL a person, with wishes even if she is unable to express them at times.

I have no doubt at times she feels like screaming as she tries to express herself