I've just been reading your answers and questions on this shocking disease. It is rather heart renching to read and to see your loved ones going through this.
Mum I think has been suffering now with this disease for quite some time however has gone either misdiagnosed or not regonised.
Mum is now at the stage were she can't walk
Can't get herself back up into an upright position if she slides forward in her wheel chair
Her nose involuntarily screws up.
She has trouble swallowing however is still feeding herself at this point in time
Suffers server bouts of uncontrollable crying.
Can't roll over onto her side in bed
Has incontinance with bladder however not bowel at this stage.
Is slow with her movements and struggles to do things - such as a simple task of taking plaster of a patch.
Has trouble with vision and appears to have what I call dead eye's and no expression on her face.
Has total personality changes from the aggression to the crying and frustration
Is very forgetfull. But to still tell me when things are not right.
Mum is in a home and quite frankly I don't think they are well enough trained to deal with the issue's. Is there any support services that can go to the home to discuss these issue's with the staff and I know that each individual is different but I believe mum has been suffering from the disease for around 4 years now started with the dizziness, then the continual falls, more often than not backwards and now to the stages I have discribe above.
Should I discuss with her the End of life form before she gets too far into the disease on her wishes.
Your input would be greatly appreciated on any advise you can give me.