End of life

Hi LauraHW 

This is really quite common though of course nobody really knows how long - well except perhaps in the last few hours. I know when my wife was first diagnosed she was totally clear she did not want a prognosis.

So perhaps the question might be how to help you - there is quite a lot of information here that might be helpful and if it helps do post here or even ring the helpline.

<<hugs>>

Steve

Hi Laura,

"End of Life drugs" sounds worse than it is.  Basically at end of life they shift priorities from keeping someone alive and alert to keeping them comfortable and minimising distress.  In practice, that means you get injectable morphine and sedatives (and anything else appropriate to your aunt(?)'s condition) for when she is no longer able to take oral meds.  These are then kept in the house so that if and when a nurse needs to administer them (inevitably 11 o'clock on a Friday night), they are already there and no-one needs to go looking for a doctor to prescribe followed by a 24-hour pharmacist.

Once you get them - put them all together in a plastic tub along with whatever charts they give you and put them somewhere safe.  They are there for when the nurses need them.

We got the drugs in October and my wife didn't need them till late November - and then she lasted several weeks after that.  No-one can predict the timescales for the illness.

Sorry to state the bleeding obvious, but can you get one of the palliative care nurses to talk with your aunt about the fact that you really need to know what is going on if you are to help care for her?  It is really not reasonable for her to expect you to care for her if she isn't prepared to let you in on what is going on.  I had similar issues at various points with my wife being in denial and not listening - but she knew I had to know all the information if I was to care for her.

I hope you are doing OK - like Steve says - look after you as best you can.

Big hug...

Pete