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Looking for advice - Carers UK Forum

Looking for advice

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My mom was diagnosed with cancer in Feb she now under the palliative care nurses and the district nurses unfortunately my mom tells them lies while they are there she bright and chatty then as soon as they are gone she back to being breathless and you can see the pain the reason for this is because she doesn't want to go back in hospital.i have explained this to the nurses but they only visit once a fortnight they look at me like I'm being fussy but I'm the one seeing mom suffering everyday. Just wondered if anyone esle had a similar problem .thank you
Sue, I'm sorry to hear about your poor mum. You say she is in palliative care, so am I right in thinking they are not going to treat the cancer itself to reduce or remove it (ie, no surgery, drugs or radiotherapy), but think that it is too far advanced, or your mum's health in general (ie, not counting the cancer) is too poor and she's too frail. So they are now concentrating on making her comfortable as the cancer takes its course. Is that right?

If it is, then may I suggest that you find out who your nearest Hospice is (I don't think there are 'national hospices', though see below what I say about Marie Curie), but there is bound to be one in your area (most are charities I think), and phone them up.

When palliative care is what the doctors order, then hospices will probably be able to help with the nursing. Your mum may have two choices - either to go into a hospice, or to have hospice care at home.

In general, from what I understand, hospices are very different from hospitals. They are dedicated to making the last weeks or months of life as comfortable as possible, and have a different atmosphere, and are supposed to be far more 'comforting' than in hospital.

As for hospice-at-home care, well, the care my husband had with end-stage cancer was wonderful. The hospice nurses arrived (helped sometimes by the district nurses - they seemed to share the nursing) and were wonderful. As well as your local hospice you will probably be able to get Marie Curie nurses in for your mum as well.

She should not be in pain. There are all sorts of painkillers now for cancer patients. My husband was on a continuous drip, that came from a little mini-box kept under his pillow, from which a tube fed into his arm and administered continuous painkiller and also tranquillisers to stop him becoming agitated and distressed. Other specialist painkillers are patches (I think they are called Femyntyl patches) which are stuck on the chest or whevere, and which release the painkiller slowly and continuously into the patient.

However much your mum tries to say she isn't in pain, the nurses should realise that she is, and ensure she gets sufficient painkillers. I'm surprised they're only coming in once a fortnight, which is why I urge you to get in touch with your local hospice and/or Marie Curie. Hospice and cancer nurses are very, very experienced in knowing how patients react, and won't be 'taken in' by your mum's attempts to say she isn't in pain.

I do wish you as well as possible. Even when a patient has reached the stage of palliative care only, does not mean necessarily that the end is coming very soon - many patients can outlive even what the doctors say they can do!

Kind regards at a very difficult time, Jenny