Moaning !

[Louvaine_2011]

Apologies if I don't explain myself well, but some advise please.

Caring for a dying relative at home. Obviously under Palliative Care, Dr's don't seem to know full extent of how ill he is, why I don't know. District Nurses only interested in taking blood test as per Dr request.

Have a carer in the morning to help wash and dress, but with increasing pain etc finding this difficult.

Have out of hours number for Marie Curie Nurses have been called out once.

Should I be expecting more help or have i got this all wrong. I do feel that I am coping well under the circumstances as I'm on my own. In fact palliative care think I'm amazing, but am I missing something.

[Ayjay]

Have a carer in the morning to help wash and dress, but with increasing pain etc finding this difficult.................................................. but am I missing something.

Is your Carees pain relief being monitored and tailored to the situation?

There some very good pain killers available which can give quick and effective short term pain relief, they can be addictive but that's hardly worth considering with palliative care.

[Louvaine_2011]

I've been given pain killers by palliative team, which we use.

[bowlingbun]

Ring the surgery and speak to the Practice Manager and ask why Fast Track Continuing Healthcare has not been applied for. Some doctors need further training. Read up about CH C today, at the "framework" so you know about Fast Track.

[Louvaine_2011]

Thank you bowlingbun will do.

[bowlingbun]

I know what I am about to write is upsetting, it isn't what you wanted to read, or be told to do.
I know about the tears it will inevitably bring, and apologise in advance.
I've supported all four of our parents in their final years.
I'm writing not to hurt you, but to help you in the weeks or months ahead.

It is time for the doctor to be open and honest with you, about how long dad has left.
When my dad had prostate cancer, obviously failing fast, the GP said he couldn't discuss dad's condition with me, even when he knew that I was going to be responsible for caring for my housebound and disabled mum afterwards!
I HAD to know, to make plans, so rang a helpline, now part of Macmillan I believe.
They asked me about dad's symptoms, and said it sounded like he had about 6 months left. They were just 2 weeks out.
I then went back to the GP. He again said that he couldn't discuss dad, but that he could talk generally about people with the same illness as dad. He told me patients were generally OK up to a point, then took to their beds, never got up again, and lasted about 2 weeks.
I didn't tell mum, but it really helped me.
Dad stayed at home with mum until his last 2 weeks, when he needed more help than mum could provide at home. They refused all carers, even with mum being housebound and disabled herself!!!
From what you describe, your dad needs better pain relief, and that may mean a syringe driver. He should not be left in great pain.
Have you thought about which funeral director you will use?
It is much better to consider this in advance, knowing what it will cost and who to ring, than to have to arrange it in floods of tears after a sudden death, as I had to do when my husband died.
However much you want to, you cannot avoid the fact that dad is terminally ill.
It's a horrible time, be kind to yourself and think ahead.
Think what will help you get through this most.

[Louvaine_2011]

I know my dad has probably days left no-one has told me did the research myself. I've arranged will and funeral.

Marie Curie nurses came out yesterday and explained more than anyone so far. One of the nurses had seen my father last week and said he'd declined so much since then.

Explaining the situation the nurse asked if I felt I'd been left unsupported I said yes. She said she would pass this all on to palliative care and nursing. She was great and understood.

I can't stop crying it's like my father has already died.

[bowlingbun]

The GP should definitely be arranging Fast Track Care in that case.
Demand that he makes the application tomorrow. He's useless.
If he doesn't then contact the CCCG Complaints department, and let them sort it out.
You should have much more help.