Hi K,
it varies so much, depending on things like where the tumours are. Usually, even in the palliative stage the man continues to have his HT injection right up to the end. Some men endure very high pain levels and need ever increasing pain relief; unfortunately, getting the balance right between pain reduction and the patient being zonked out is quite difficult and so as the pain relief increases, the man just sleeps more and more until he is unconscious and then slips away. Men with extensive spread in their lymph nodes may struggle with odema (swelling / water retention). For other men, particularly where the pain isn't so bad, they may continue to be quite well until an infection or organ failure causes a rapid decline. What we often see is that the man finds it increasingly hard to move around, often because of bone pain or odema, loses their appetite, sleeps more, drinks less and then basically their body shuts down. Nature is a very clever lady - the reason that people who are dying often stop eating or drinking is because their brain gets messages that the body doesn't need these things any more and the person gets dehydrated which triggers a natural pain relief chemical so that they don't suffer so much.
I hope that it will be a good long while before you have to face these things - palliative care doesn't mean 'the end is here', it just means that no more treatment is going to be given apart from to keep someone comfortable and maintain their quality of life for as long as possible. We had a member here a couple of years ago who carried on for over 2 years after he was referred to the palliative team although there are cases like my father-in-law who died of organ failure within 24 hours.
I think the best you can do right now is to have the difficult conversations about how he would like the end to be - at home, in a hospice, with people around him or in private - and making sure that all financial / legal matters have been sorted and then put all of that to one side and make as many happy memories as you can. It is much less scary for him and less distressing for the family to have these hard conversations now while he is still well in himself than it would be to try to talk about these things when he is failing and probably frightened. There are lots of things to check:-
- has he been referred to a hospice or Macmillan service?
- what support services do they offer - many have day centres, counsellors, holistic therapies, social workers who will support dad and family members
- has dad applied for PIP - he will be entitled to financial support under the special rules if his oncologist or GP agrees that he has less than 6 months to live but many doctors will sign it if they believe the patient might have less than 12 months. Applying for this money is very important because you can use it to pay for any equipment that would make dad more comfortable or more mobile, plus if he needs nursing care / night sitters towards the end, the PIP can be used towards the cost. The hospice / Macmillan usually have staff or volunteers who can help patients apply for PIP
- the hospice team or palliative care service will assess whether they and the local authority might need to offer any assistance, such as a proper medical bed - Dad won't need these yet and may never need them but early planning means there is more chance of him getting what he needs at the right time
That is a lot of information for you to take in and may read as a bit brutal but I think knowledge is power; once you have a picture in your head of what might happen, it takes away a lot of the fear. Tuck those fears away now until you need them as it seems you are not at that stage any time soon - find ways to connect physically or virtually, show him he is loved and take lots of opportunities to feel loved yourself.
Edited by member 15 May 2020 at 02:13
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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