That is discussing how sad for you I don't know if the district nurse really should be in that job it's the same as always you just need to speak to the right person definitely not that stupid nurs

I'm really sorry you're having a horrible time and feel questions should not be asked but unfortunately in this situation the position has to be clear, I k ow this as my husband was in this position last January.  We had to sign a DNR form, we were told he had three months from coming home, so they would not put the syringe driver in for him until he was near death.  He died six days after coming home and it was not pleasant.  Unfortunately its the palliative care team and District nurses who care for end of life at home and even though my husband wanted this I would not recommend it when that person is so frail and ill.  It was a roller coaster of a ride of bad decisions and lack of thought.  So all I can say is you will have some very hard decisions to make to ensure he has a more peaceful death and they don't try and resuscitation, this is why you need the DNR.  My heart feels for you all as I've been in that situation and it's awful.  Take care of yourself as well so you can cope.  Carol x

Unfortunately I have just experienced a similar situation with my mother dying at home.  Both my mum and dad wanted her to be at home when she passed, at the time I supported their decision, but with hindsight i am not sure that i would again.

For the first 10 days home from hospital, we had a so called emergency carers package set up, the carers let us down on 6 separate occasions in that time. I spent countless hours driving around to various pharmacies trying to get her painkilling drugs, because no one seemed to have stock.  The final 4 days of my mums life, i dont believe that the district nurses kept her comfortable, she was coughing badly and struggling to breath she was also very agitated even though she was on a syringe driver, i called the nurses out during the day, they said that was normal as she had cancer spread into lungs and they said that she didnt need any extra drugs, i didnt agree, waited until out of hours palliative care took over, called a doctor out, who told me that mum was burning up with a temperature and had pneumonia.  That doctor agreed that mum was distressed and suffering, so gave her extra painkillers and relaxant to calm her, she was then finally settled and passed away 10 hours later.  I dont believe that my mum had the level of care that she should have and we certainly didnt have the support that we needed as a family, in order for her to have a painless death at home.

I did what I had to do to support my parents, but I hope to god that I never have to go through that again!

Hello there and thanks for posting

I am so sorry to hear about your dads situation and appreciate what a difficult time this must be for you both.

It must be very confusing to be told one thing by the consultant and something else from the district nurse, and it sounds like you have been left feeling very unheard and alone, not really knowing where to turn.

If your dad has a specialist nurse at the hospital I suggest you try and call them and ask if they are able to refer to the community palliative care team urgently. Then hopefully things can move much more quickly in getting the help your dad and you need at this time.

Failing that try and speak to the receptionist at the GP surgery, explain the situation and find out if the GP can speak with palliative care and at the same time they may be arrange a GP visit to assess and any immediate symptoms that need addressing, such as the shortness of breath can also be acknowledged.

The other thing you could consider is calling the palliative care team directly to find out if they are aware of your dad and if not telling them about his situation.

Here there is the link to the cancer care map where you can search up local services to help cancer patients and families. This will vary from area to area but you may find the details of some local charities or cancer support organisations that can help you quickly.

We have a section of information about death and dying here on our website that may of interest to you if you haven't already seen it, although I do understand this can be upsetting to read. It includes a section about support for carers as well as community care and support at the end of life.

I hope this helps but do speak to someone and get the ball rolling. Do get back in touch if you want to or you are welcome to call the helpline on 0808 800 4040 weekdays 9-5.

Wishing you the best

Take care

Naomi

I fully support everything you have said, the so called painless death at home did not occur and I would never put my daughters through that again.  I would choose a hospice where the level of care is so much better and you're not left with the trauma of being alone  with a deceased loved one to deal with because if you're at home then it's left up to you to deal with it all, we never understood that and my daughters and I were totally  alone after my husband died to sort it all out.  It was awful. CAROL X

Hello Gez06

I am so sorry to hear your dad passed away on the weekend, this must be such a difficult time for you and I hope you have the support of family and friends at this time.

When you feel up to it and have had time to process what had happened, I suggest you contact the hospital and community teams involved to let them know how this situation has left you feeling. This can then be looked into further to hopefully give you some more answers and closure on what has happened, as well as hopefully preventing someone else going through the same.

If once the dust has settles you feel you would like some bereavement counselling then do contact cruse here.

Do get back if you wish to or if you ever want to talk things through with one of us our number is 0808 800 4040, we're here weekdays 9-5.

Take care

Naomi