Hi all my dad passed away peacefully in ol... - PSP Association
Hi all my dad passed away peacefully in oldham hospice Lovely place on the 20 December no more suffering anymore for my wonderful Dad
My sympathy. Words aren't enough, but I am sorry for your loss. Even though there may be comfort in knowing that your father's suffering is over, it's a grievous time. I wish you peace.
It must help you to know that your dad died peacefully and in a lovely place. He is in an even better place now and at peace. My thoughts and prayers are with you Baddie.
Nanna B
Dear Baddie,
Beautiful to read - positive thoughts generate positive energy.
To your father - Rest in Peace.
Regards,
Alana - Western Australia
So sorry to hear your news. My Mum also passed away in September this year, I too took comfort knowing her suffering had ended. Still feeling a bit numb to be honest. Take care of yourself lovely. My thoughts are with you and your family.
Hugs
JoJo xxx
I am sorry for your loss. Peace to you all and I am sure you will have plenty of good memories to help you through this sad time xx
I am sorry for your loss know how you must be feeling I lost my husband to this horrible illness on the 5th December, 2013. I am glad your father had a peaceful end and hope you take comfort from this. My thoughts and prayers are with you.
Dear Baddie, Sorry to hear about your father, but as we all know even that we feel such loss and sorrow we gain comfort to know that our loved one is at peace now after a terrible journey. I am in the midst of this journey now, with my father and I would dearly love to get him into a hospice. You say your father's hospice is in Oldham, is that in the UK? Please could you tell me how it came about that your father was accepted into the hospice? We are in London and the nearest one to us is St. Joseph's in Hackney. They say that they will only take people who have two weeks to live. My father is in a terrible state and the nursing home care is not sufficient for him. He is in hospital now, for the last three weeks plus with aspiration sepsis and it is because they will insist on force feeding him. If he goes back we will have the same problem as the young carers just do not understand how to treat him. Could you offer any advice please? Dad is bed ridden, without speech, mainly blind with facial dystonia, doubly incontinent, 97 years old, cannot move at all and so very thin. But nobody can guarantee that he will die in two weeks. I just do not understand what is required for hospice level care.
Hi Nader
While your Dad is in hospital ask for the Pallative Care Team to come and review him, they deal with all terminal cases for any illness. I found them to be extremely compassionate and helpful when my mum was dying last September. They did try then to find room in 2 of our local hospices but they were full. We were given a side room so we could spend mums last days privately. Please do let me know how you get on, they understand that prolonging life when their is no quality of life isn't always the way to go. The families wishes and those of your Dad will be taken into consideration. I hope this helps.
My thoughts are with you at this very difficult time.
Warm Regards
JoJo xxx
Thank you JoJo-K, Maybe eventually I will be given the chance to meet with the Pallative Care Team and put my case. Waiting now to see if they can treat the dystonia so help to ease feeding problems but will 'push' for hospice care. Best Wishes.
Hi Nader we asked the pallative care nurses to sort this out for us,
They contacted the hospice in oldham manchester they had a bed free so they got my dad in the next day.
We could not have asked anything while we were there it is the first time our dad was not in pain and he was so peaceful.
The staff at Dr Kershaws hospice looke after my dad and us.
We didn't have to leave dad we had a bedroom where we all could stay.
He was only in there 2 weeks when he passed away
But we know he was comfy in the hospice
The hospice will say they only take people in for 2 weeks but they won't send them home.
We have read a lot about psp saying you die of an infection.
Our dad had no infection when he passed on it was the psp that took him from us.
I hope you get your dad in a hospice don't take no from them
Take care Baddie x
Thanks Baddie, Really struggling here. Ten days ago the consultant geriatrician said that he could die tomorrow, one of the SALT nurses said he was going to die, that was on the 19th and the neurologist said take him off all medication and we will see what we are left with after a month! I said 'O.K!', thinking silently 'Is he going to be alive in a month!'. Anyway now Dad is eating a little better, say 20 teaspoon fulls, once a day with me, if the dystonia face spasms do not kick in. They were bad last night and I just do not how, when and even if they can treat it. The staff in the hospital are frightened to feed him and give up after about four teaspoon fulls. Nothing has been said to me yet about what their plans are for him, but I will take your advice and push for hospice admission. I cannot think where else he would get the care required. The neurologist asked me what did Dad enjoy doing and I told him 'Nothing', he looked at me as if I was mad. I wrote a letter to the geriatrician and told her Dad had been like this for 2 years, that I have searched for help all this time without success and that I could not find anything that he could enjoy whilst he was in this state but that I was open to suggestions! I think they got the message then. Thanks for your reply. In the hospice literature they do say they take people with neuro-degenerative diseases and nobody can accurately say when a person will die, so I cannot see the problem; but I would not want to take a place which was needed for someone else.
Hi Nader
I am really sorry to hear that your Dad has the Awful illness
I am Anthony, Baddie's brother, i hope you get a place at a hospice, they did just make dad comfortable and he only had a miniscule amounts of water and food as this was causing him distress due to this illness.
Push with the Pallative Care team these can help you more
Thank you Anthony. I will do as you say but I have approached the hospice some months ago and they spoke to the nursing home who said everything was OK and told them that Dad was already having palliative care. The problem is that I cannot see what this care actually is. It has taken months to get a visit from any sector of the team and they are all actually based either at the hospital or under the control of the hospital or G.P. and there seems to be little communication between or amongst all the different divisions. The SALT lady came and the home does not follow her advice regards pureed food and feeding technique, the continence nurse has just got in touch after five months and cannot visit him now whilst he is in hospital and so for the hospice to direct me to the palliative care team does not work for us. It may be different now that he has been actually admitted to hospital and the consultants may help sort things out. Today I had the first communication from the home asking about Dad and I gave them the worst report I could so that hopefully they will say that he is too much of a responsibility for them to take back. I hope this happens because I hate that home and then they will have to consider hospice care. It will also depend of whether the local authority will fund it and I know they are not willing as it is more than ordinary nursing home care. I am doing my best but it is a mine field out there and I have to be careful not to upset people and time is of the essence for Dad and i get so frustrated with them all.
Hi speak to the pallative care and tell them you want yor dad to spend the rest of time in a hospice contact your local hospice to see if they have a bed
Also speak to your dads doctor and tell them you want your dad in a hospice
The hospices are so nice and the best place to go for the end of there life.
My dad was so peaceful and can't understand free of pain.
The care he got was amazing
So much better then the hospital and hi carers at home even though they were good with my dad.
He was just 70 when he passed.
Our pain is hard as we can't hold the funeral till the 10 January with Xmas and new year.
I really hope you get somewhere keep fighting for your dad x
Sorry for your loss of your dad. I've often said that losing a parent is a very difficult part of life. No one loves us like a parent. My you and your family find comfort in knowing he is finally at peace.
Jimbo
I'm so sorry and saddened to hear this. May his soul rest in peace. No more suffering and no more pain, finally he is free from the dreaded PSP. He will be whole again flying high with the angels watching over and protecting you xxxx
baddie and the kelly5 are my brother and sister
all we can say is knock on every door shout the loudest to get what you want for your loved ones thats what we did
we all know there no micacle drug but do what ever you can to make everything as easy as you can.
the problem is half of the help available isnt advertised
look into these roads
Pallative care do you have it?
district nurses?
carers?
social worker?
physio?
speech therapist?
just to name a few if not start knocking on them doors.
as for hospice care they was brilliant with our dad if its offered bite there hand off as its the only time we have seen dad comfy for a longgggggggggggggggggggg time.
love to all
stephen kelly
xxx
