I wish this were a more positive first post and I hope everyone else reading this who has or is involved with a blood cancer has a much more positive outcome but... My dad only has a few weeks, at best to live. He had myeloifibrosis (sorry if spelt wrong). It's transformed in the past couple of weeks to an acute leukaemia and yesterday his consultant told us there's nothing more that can be done for him. He's at home. He spends 98% of his time sleeping. I just wondered if anyone had any tips or personal experiences of how we can make this time any better for him. The palliative team at the hospital have sorted out his drugs so he shouldn't be in pain (he had knee pain, probably not related to the cancer, that currently 'just' means he's permanently exhausted). Just to know what you did / didn't do, what your friend or relative enjoyed. Obviously we have ideas but if I can find a clue of anything that'll make it easier, this post will be worth it.
He and we are desparate that he doesn't have to go into hospital again - he'd probably be taken to a&e at his local hospital (not the one, which is slightly further away where his consultant is), and that would be awful. He doesn't want to go to a hospice either (he's seen his friends in them and prefers home).
We're urgently trying to sort out home hospice care / Macmillan but we only put in a request on Tuesday (.he's gone downhill very quickly - he was 'OK' a week or so ago), but the Easter holidays are slowing things down - assuming they even have any capacity.
Sorry this is a bit of a ramble. Any helpful advice appreciated. We do have contact numbers at the hospital.
Thank you.
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Sebnose
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Hi, Firstly a great big welcome to the forum. I am wondering how to reply to your post, I suppose it is very much being led by your Dad would like and his energy levels. Some people say honest communication helps, it depends? Might he want to talk about his fears, thoughts and feelings? Might he want to tidy up his affairs? Might he want to reminisce? Might he like to look at old photos? Might he like to see friends or family? Might he like to talk about family history? Might he like to watch a film or DVD? Might he like to watch a programme? Might he like to watch some sport on TV? Might he like to play a board or card game? Might he like to do something to do with a hobby? Might he like something special to eat or drink? If he is able to go out in a car, if so is there somewhere he might like to go and see, even if he does not get out of the car?
I apologise if some of my thoughts are inappropriate.
However I am also concerned that you might need support.
Have you any support from anyone, caring is perhaps a very isolated exhausting role. Can you get a few minutes to yourself perhaps just to have an extra bubbly bath or something just for you?
Needless to say it is the Easter Bank Holiday weekend but usually you can contact
the Leukaemia Care support and advice:
Email: support@leukaemiacare.org.uk
Freephone helpline: 08088 010 444
Opening times: Monday to Friday 8:30am - 5.30pm & Thursday and Friday evenings 7:00pm - 10:00pm
This site is here for you and we are all here to support you.
Take lots of care of yourselves and keep posting so we can support you.
Although you may already have done so, consider expediting the conversation with a reputable experienced in home hospice caregiver. Plan ahead to have someone else that is in the circle of close family or friends share the responsibility of making sure he is kept pain free, comfortable, and cared for so that the support team avoids getting exhausted. You can rent an adjustable bed which makes it easier to get up and back to rest when weak. Inquire with him about what he would like to have accomplished in both the short and long term and any other topic than will provide peace of mind. Put together a contact list of your support resources than can be reached 24/7.
Be Strong for him and allow yourself to be helped comforted.
I am so sorry to read your post. I am newly personally aware of how fast these things can go down hill, and really wanted to send some sympathy and let you know someone is listening.
As to what to do, that I am also working on, and don't really know, except, I guess, listening to what he wants. Most of which is guided by his energy levels, I guess.
As 2003UK says, some people like honest communication, I know we just made a questionnaire, so that all the things that need sorting out can be thought about, but without the confrontation of speaking about them and without the limits imposed by fatigue. On the other hand, even that is way too direct for some people.
Really sorry to hear about your dad. I haven’t had much experience of this but would agree with the others who suggest keeping him as comfortable as possible and following his wishes, ie keeping him at home.
A very difficult time but maybe try to focus on happier memories.
You may find some of the compassion in dying resources helpful - they cover lots of legal issues compassionindying.org.uk/li...
We aren't an pro or against any particular religion, but one thing we have heard of is people wanting spiritual support at the end - even if they haven't been religious during their life. If you think there is even the slightest chance that he may want to talk to somebody, then it might be worth giving the local church or appropriate religious organisation a ring to see what you need to do if they need them.
Our helpline is open from 9.15 tomorrow and there will be a nurse on the line. If you need us, please call us and our nurse will be there even just to listen to you and support you.
I am sorry on two counts for your situation and not finding your post until today . My son has AML has had a BMT but relapsed three times presently about to enter trials so I feel your pain .
I write to bring your attention to possibilities for support and care at home I am a registered nurse and have my own health and social care business . You can apply for continuing healthcare and indeed your local authority to provide carers to support this means your father could remain at home . This isn’t always routinely offered because of funding but it’s a very real option speak with GP, district nurses community matrons and give your local authority a call usually it’s the access team you’d need or ask to speak to a social worker on call for your area . Persistence is required but if it’s what you and your family believe is right then it can be achieved . I wish you well and continued strength throughout these dark days much love Christine x
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