Palliative Care update pg 7

[Princess Ariel]

Thank you all so much, that’s a really good sure about having a bag ready, I’ll definitely do this. Hopefully we will get a bit more clarification and information this afternoon.

[Sally42]

I’ve no advice for you but want to send my love x

[alibeau]

Sending much love and strength to you.

Ali x

[Princess Ariel]

The palliative care nurse has spoken to my mum, dad and sister this afternoon. They are arranging for emergency funding so that mum can have carer visits x4 daily so that she can go home. They are also arranging for a palliative physio and OT home assessment in the next couple of days. She also told us that inpatient hospice care is also an option if we feel unable to manage mum at home.
In regard to prognosis she stated ‘months’ I asked if we were looking at less than 6 months and she replied most likely a couple of months.
To be honest it’s just a relief to have some sort of realistic timescale and a plan in place now.

[bonnies mum]

Hope arrangements get made as soon as possible.
Very sorry that your mum is so very ill and hope that her pain relief is sorted to keep her comfortable. Xx

[Karababe]

Sending hugs and lots of love at this difficult time. Xx

[harber78]

Hi Princess Ariel, I am DFussy mum and my husband was given a terminal diagnosis too and had pallative care and eventually died at home.

You need the hospice at home team with a contact 24 hours a day as I had to call out emergency care a few times and having someone to call when you’re scared is vital as they give extra pain care when needed. Make sure your doctor and Macmillan are aware if at home too.

The carers who come in under emergency care are amazing but you are still alone caring the majority of the time which is why the 24 phone support is vital.

In my experience doctors and Macmillan and district nurse didn’t want to give information on how long as it is difficult discussion. For example our doctor came to our house on a Thursday morning and said my husband needed to go on the drip for pain medication and agitation and contacted district nurse to fit. I asked her if I needed to contact my son and she said it was up to me. My husband died early Sunday morning and I found out later that GP told his fellow GP that my husband would die that weekend but didn’t tell me.

So my advice is make sure you spend as much time as you can as cancer timeline is unknown in reality. If you don’t think your father will cope then ensure that palliative team know.
But ensure your mum gets to be at home if that’s what she wants as for us as a family it was hard but much better option than hospital or hospice.

Good luck and hugs for you and your family x

[Clare]

I'm so very sorry x

I lost my father after a 4 1/2 year battle with cancer 2 weeks ago. My father received palliative care in the community under the care of our local Hospice community nurses as well as district nurses, when it appeared he did not have many days he was admitted to the Hospice. Our Hospice only admit for 2-3 weeks due to the large area it covers, he stayed 3 weeks but stabilised so came home. I'll be honest with you, in Dad's case end of life care at home wasn't suitable. We had carers 3 times a day, plus a night carer, district nurse once a day as well as the Hospice community team on the end of the phone as well as overnight phone support if we needed emergency nurse support. Dad was put onto a syringe driver 4 days after coming home but due to the aggressive nature of his cancer it was not always effective, we would have to call the out of hours team to give extra pain relief, on a few occasions the team were busy with other patients and we had to wait over 2 hours. Very difficult to do when Dad was groaning in agony. We made the decision that it would be kinder for Dad to go back to the Hospice, 2 days later a bed became available and Dad was readmitted. The Hospice was calm and a very loving environment, they immediately got on top of the syringe driver and Dad passed away very peacefully 2 days later on 10th June.
Everyone is different and there are often very difficult conversations to be had but in our case we are happy with the decision we made for Dad to return to the Hospice.

[Colette-S]

Thinking about you Princess Ariel. We cared for my husband at home last year with the aid of hospice at home and the district nurses. We were given emergency help too. Hospice at home were invaluable not only for my husband but for the support they gave me and the kids.
If I can help in any way please ask x

[nadya]

Sorry to hear this,my mum passed from pancreatic cancer in 2014,3 days before my sons birth.She was adamant she wanted to die at home,but in the end she went in as the pain relief supplied wasnt helping,her kidneys were failing so the morphine didnt help.My poor dad bore the brunt of all her meds and testing,although they had nurses in most days.I hope you get the support needed so she can be comfortable wherever she is.Thinking of you at this awful time.