hi everyone ..
its been a week now and my husband is now on end of life palliative care under something called hospital at home ...
we have a hospital bed downstairs now and a support thing for the toilet to help him ....
the palliative care team have been brilliant and so supportive as well
he spends a lot of time asleep now but hes not on his own stuck upstairs and i dont have to keep trekking up our very steep stairs ...realised that going up and down stairs doesnt help you lose weight !!!! ..just makes you knackered
we dont know how much time he has left now but we know its weeks rather than months ....
its lonely being a carer because he sleeps a lot so i spend a lot of time just waiting for him to talk to me and tell me what he needs ,,,but my daughter had a dubious but brilliant idea of getting a doorbell which he can use to call me when he needs something ....so i can escape upstairs if only for a short time to rest and chill if only for a few minutes ...mind you we got him downstairs on monday to get in his bed and it only took 15 minutes for him to ask for the remotes for the tv and cable !!
hes not eating much now and drinking water mainly ..he did have an issue with very low blood pressure over the weekend and there was talk of him going into hospital which he refused ...was told by a doctor that sometimes low blood pressure can be caused by dehydration and to up his liquid intake which we did and hes been taken off his blood pressure meds for now until it goes high and then we can reintroduce one blood pressure pill at a time ..he informed me this morning that hes not taking any of his medication now ...hes also been prescribed oramorph for pain as he said his back hurts because of the way he lays in the bed ..i think that hes too tired to move now and im just watching out for sores on his hip ...he says hes not in any pain from the cancer but im not sure if hes hiding it or using his back as an excuse ...its his choice whatever he wants to do and i respect that ..
he has had spells of aggresiveness or agitation which we know is caused by the frustration of cancer eating away at his body...bes scared and angry at the same time and all i can do is just be there when he needs me .
ive been lucky in that my daughter has been able to stay with him so i can get out and get some shopping and fresh air and just be away from the situation ...it makes me feel guilty though because i love him and dont want to miss any time with him ......
the nurses have told me i need to take time for myself to recharge when i can but i know in the next few weeks i wont be able to go out and about as much .
we were asked about carers coming in but we said no thanks as i can manage at the moment .....
its tough but thats the cards we got to deal with and we cant change anything so im just in the moment and going day by day ....
the reality is that hes fading away slowly and he will be at home when it happens and i can deal with that because we will be together at the end .
hardest part is telling our family and friends ..although ive perfected the art of saying as little as possible ..bare facts only ..
we are coping with gallows humour ...we told him if he passed on christmas day we would either haunt him or revive him and kill him ourselves !!! he did laugh at that ...weve decided to put christmas lights on his bed just because we can which made him smile although he drew the line at tinsel lol ....
i offered to get him a christmas sweater and the answer i got made me laugh ..well the rude gesture that went with it did ...
i think at the moment we are doing what we can to make his last days as easy as possible and try and make him smile if we can ...the nurses that have come in have all said that its good to see us making the best of everything albeit with gallows humour !
one good thing though is we dont have to deal with our gp surgery about gary ..the nurses do all that and its been a relief not to have to worry about that
its been a journey and a half so far and im just hoping that when the end comes he doesnt suffer ....
take care everyone
sarah x
