Hello fedex, I understand your posting about your fathers care and despite perhaps upsetting some people who work within that field, I do believe that you have every right to share your expereiences. Unfortunatley not all hospice or hospital care is good and if you have experienced some not so good care, you have a right to speak out.
When my mother was dying in a hospice we had to complain numerous times about the quality of her care. We were all working full time and couldn't have her at home unfortunatley but we went in to the hospice many time to find her in dirty nighties, food dribbled down ect. When we confronted staff we were told 'it was my mothers choice' not to get washed and changed and they had to abide by that. She was a 75 year old lady, who was very confused due to the meds, but nobody could talk her into getting a wash and change of clothing, I do not believe this for one moment! We took her to the toilet during one visit and found that she had the biggest bedsores on her bottom that I have ever seen.
May I say at this point our family come from medical backgrounds, my sister and brother in law were doctor and nurse and my husband was a mental health nurse.
Suffice to say our written complaints were taken to the top and things did change for my mother before she died.
Like Fed I do not wish to offend anybody with my tale, however, it happened and it is a fact of life that all NHS care is not fantastic. thank you Fed for sharing your experience.
Glenchass
Hi Fed and GC
Hands up guilty as charged , I did PM FEd did not do it publicly on the Forum as aware of all the difficulties Fed having at the moment, it was done out of thoughtfullness certainly not as threatening. .
My point was that i am all for anyone and everyone having their say it was the word 'hastened' death that concerned me from a professional and personal view point.
Personally with all the recent bad press around the Liverpool Care Pathway I experienced an awful outcome for my Dad who was dying at home (in another county to where I live and work) The Gp practice did not sign up to the Gold Standard pathway to ensure end of life anticipatory medication was in the house and so my poor Dad had to suffer the most awful terminal agitation that I as a professional have ever seen for 14 hours as was unable to get a Dr OOH and the poor District Nurse could not get hold of anyone to sign a prescription, hence my Dad did not have a peaceful and dignified death . this has haunted myself and my brother and will stay with us forever ...
The sad thing is that due to the stigma around end of life medication which evidence has shown does not hasten or prolong life ; i witness every day families making decisions for their loved one that impacts on the dying process.
Sorry for the rant , i certainly did not mean to upset FED and certainly do agree that he is very much entitled to his opinion and apologies again for responding to the word 'hasten'.
Best wishes to all x
Hands up guilty as charged , I did PM FEd did not do it publicly on the Forum as aware of all the difficulties Fed having at the moment, it was done out of thoughtfullness certainly not as threatening. .
My point was that i am all for anyone and everyone having their say it was the word 'hastened' death that concerned me from a professional and personal view point.
Personally with all the recent bad press around the Liverpool Care Pathway I experienced an awful outcome for my Dad who was dying at home (in another county to where I live and work) The Gp practice did not sign up to the Gold Standard pathway to ensure end of life anticipatory medication was in the house and so my poor Dad had to suffer the most awful terminal agitation that I as a professional have ever seen for 14 hours as was unable to get a Dr OOH and the poor District Nurse could not get hold of anyone to sign a prescription, hence my Dad did not have a peaceful and dignified death . this has haunted myself and my brother and will stay with us forever ...
The sad thing is that due to the stigma around end of life medication which evidence has shown does not hasten or prolong life ; i witness every day families making decisions for their loved one that impacts on the dying process.
Sorry for the rant , i certainly did not mean to upset FED and certainly do agree that he is very much entitled to his opinion and apologies again for responding to the word 'hasten'.
Best wishes to all x
Hello Bubble, I am so sorry to hear of you and your families experiences whilst you father was so desperatley ill. It's hard enough coping whilst watching our loved ones slip away from us but when you know that it could have been made so much easier for them..well it's pretty outragous.
I really would like to see a much better system in this country, one which would allow people to die with dignity and at a time when they themselves felt that they had had enough. It can be so distressing to watch and feel totally helpless, particularly if the patient is in pain.
Once again Bubble please accept my condolences, take care.
Glenchass
I really would like to see a much better system in this country, one which would allow people to die with dignity and at a time when they themselves felt that they had had enough. It can be so distressing to watch and feel totally helpless, particularly if the patient is in pain.
Once again Bubble please accept my condolences, take care.
Glenchass
Hello iv just read your post re your late father im so sorry. I have recently lost my father and when I read your post i feel that my dad also had parkinsons disease although nobody diagnosed this. I would love a chat at some point I am still so sad.
Hi @Barbaralove, 
Welcome to the Parkinson’s UK website
We’re truly sorry to hear about the passing of your father, our thoughts go to you and your family. 
Even though you are unsure as to whether or not your father had Parkinson’s, we welcome you to the community and I’m sure our members will reach to you soon. We have a lot information on how to cope with bereavement via the Parkinson’s UK website which I’m sure you’ll find helpful, feel free to explore it whenever you like and you can find it here: https://www.parkinsons.org.uk/information-and-support/how-do-i-cope-bereavement
Please take care and no that you are not alone.
Best wishes,
Reah
Forum Community Manager