Hi i dont know what to do my dad was diagnosed in April with spinal cord compression and had radiotherapy and was ok for a while. My dad took ill on 4th December and had to be admitted for more Radiotherapy on 19th December as the spinal cord compression has come back and cancer has spread to lungs and such. My dad keeps getting infections and on drips but they want to send him home, he lives alone and carers come in during the day but would be left with no one at night and i am really scared. I do not live in the same town as my dad and really dont know what to do or where to go for help as he is paralysed and cannot be left from 7pm to 7am without any care. Can anyone please help me on what i can do x
OK first welcome to the site of reluctant members. There is a limit to both what you can do and the support you can give from a distance. Stop trying to cope alone and sitting there worrying.
Maybe the first step is to seek some advice from Macmillan Support who will be able to direct you to the agencies that are best placed to support your dad.
They have a free phone number 0808 808 00 00 Monday to Friday 9am - 8pm
You have not indicated the source of your Dads Cancer, is it the prostate or the spine, I would suggest you also join the group Spinal Cord Cancer where you may get more relevant information
Cheers John X
Thank you foryour reply my dad startedoff with prostrate cancer but has spread to his bones and this has caused the spinal cord compression. I have been toldtoday the cancer is in his lungs and that and he is only 65. I have asked for a rough idea of how long he has left and been told don't know and feel totally lost. I will contact Macmillan as i did speak to them when my dad first became ill back in April and they were really helpful and caring.
Thanks again Connie x
Hi Connie, my Dad is the same, he has only just this week been in hospital with spinal compression, its in his prostate and bones, they have done x1 radiotherapy so far and upped his steroids, so he thinks he can conquerer the world but the body is not willing, i dont think he has the strength to stand, they were supposed to start chemo next week but i cannot see this happening. do you have a macmillan nurse? these have alot of power and are experianced in pain control, ours even asked him if he would like a live in carer! when or if he comes home they will hopefully get all the grab handles, bed etc orgainised. the mind is very strong so please try not to worry untill you have something to really worry about then help should be there for him, if it isnt make lots of noise! xx
Hi Thanks for all your kind words. My dad is getting all the equipment sent home but he lives alone and i managed to speak with the district nurses about Marie Currie nurses and have been told they can only give me 3 nights they can be with my dad and if i have to get other care my dad will have to pay for this off his [pension. I am totally disgusted with this as when i contacted marie curie they said cover could be arranged but no mention of how many days or such. I just dont know what to do anymore. My dad wants to come home but the district nurse told me she would rather he was in the hospice and he will not go there yet he has refused point blank. What else can i do please help me
my dad is still in hopital with the compression, he seems no too worried about going i to a hospice for complex discharge as they call it to learn what he will need when he goes home,there will will have a co ordinator who discusses what we can do versus how they can help, no mention of limits to days etc? the hopice is not nessicarily the end, ( cant spell!) its comfy with nice ladies with bits of cake, as well as all the onhand services that he would require, is it selfish to say do it for me? to put some pressure on him, to try it for the day? my dad would nt go to the day bit as he felt they were all old n dying, but it is a very pleasant light atmosphere there, where you have your own room, and you can stay there too, i stayed in the room on a camp bed when my sister was admitted there, no problem at all x
but what i want to know is will he now be house/bed bound or will he be able to get from the bed to a chair or even, into a wheelchair or scooter for afternoons at a coffee shop etc, the realisation of what this all means is slowley sinking in with all of us, he thinks coz he is not in pain he can walk, but he cant, the physio help him with a hoist thing but he couldnt to it without that.
Hospices are not just end of life - I go to my local one which has a marvellous day centre where people at all stages of cancer from diagnosis onwards. yes thay are very pleasant andhave a warm atmosphere with wonderful staff.
I fully respect patients wishes when they dont want to go to one - but if and when i get to that stage of disease i will much rather be in a hospice for the last few weeks as there are expert staff there all the time and it relieves family and friends of having to cope with 24 hour nursing.
And even if someone wants to be at home for the end - then a visit to a hospice before then enables the staff there to set up the right drug and caring regime.
Hi my dad finally got home from the hospital on 27th Jan but we have had a few ups and downs with him to begin with. The carers he has going throughout the day are worth there wait in gold as far as i am concerned. My trouble was with link nurse that i had to fight for, we had arranged to get them to come in between 2-3pm to make sure my dad was ok, they were coming about 5.30am but i got on the phone and got this resolved. We ahve had to increase his Zomorph also so that he is not taking so much Oramorph but seems to be more settled that he is home. Do not know what to expect but i have noticed that his moods are getting worse and is shouting and moaning at me a lot but just try and ignore it and not take it too heart. Will keep my post updated as and when i can as working and going up everyday is hard work. Thank you all for your support x
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