Hello starlet I have just received this reply from the Parkinson’s Magazine, make of it what you will - it doesn’t really surprise me.
Tot
Thanks for sharing this post.
I think you are right about fit for the magazine, but you raise some really interesting themes. We will give it some thought as we plan content in the future and will be in touch if we think we could use it for soemthing.
No one can understand but people just feel they have to give a response/attempt to help without really thinking or imagining how their ‘solution’ could be impossible. I know how frustrating it is when you’re really just trying to say how things are, knowing there isn’t any solution. Just a listening ear, with a nod is all that’s wanted
Aileen you are so right. Xx
My husband is in hospital on a dementia ward (awaiting nursing home placement as he has been assessed as no medical capacity as he can’t understand or self manage insulin jabs for diabetes to keep himself alive any more) and non medical staff have made fun of his dyskinesias and uncontrollable drooling. I complained. I have also asked the local offshoot of the Alzheimers society (they deal with all dementias including Parkinsons dementia) to make a case to all hospitals that non medical staff on wards are constantly reminded to manage conversations with dementia patients and avoid reference to going home today or whenever, just because a dementia patient is up, dressed and walking about. Non medical staff are forever building hopes and expectations in patients who cannot go home, and destroying the efforts of the families and medical staff to manage the patient’s understanding and appropriate care. It’s not conversation it’s cruelty
