How long

Hi, I’m so pleased that you have been able to spend some time together, however difficult it is, remembering these time sand holding those positive thoughts and memories will mean such a lot to you.

I’m trying to do the same as I spend the final times with my wife. 

sending you both positive thoughts, take care. 

Hi sorry but I need to talk to just someone and saw this feed searching . My mum is end of life at home we haven’t had much help or guidance at all and no one tells u anything it’s frustrating my mum is bed bound and deterioted last few days she’s gone from eating to nothing she’s had nurses out a lot with pain and injections and has a 5 g morphine patch on but has been having top up last night she was breathless and anxious and has had this for the last week the nurse gave something for this ever since she’s been nocked out she can’t toilet we ring nurse and they just say we can’t really do anything and just to call but I feel we should have more guidance as to when she will die ? The nurses said months ages ago and everyone doesn’t seem to nw but surely they review and check this to see how long with the going down hill . All they do is give injections and carers come and clean her my sister is sleeping with her and exhausted we haven’t seen any cancer nurses and palliative work 9-5 which I find weird to say people die 24/7 . 

the support has been second to none mum wanted to be at home and we will do her wishes but it’s 24/7 care and wondering when she will pass away is killing us . She isn’t on driver but she’s unconscious and saying pain hear and their where my sister has to give meds as top up they won’t catheterise her and she can’t go to the toilet as she’s soo weak so has to do her business in bed me and my sister have never done this before and it’s all a big shock just wish we would have support from people in the community for guidance when we do ask we just get fobbed off . 

it’s such a shame their isn’t any help for dying at home and family are left to do everything but walk into the unknown 

please help anyone with your experiences at home Claudia 

Dear Claudia, 

I am in a similar position to you. 
I am not a natural nurse at all and I’m doing my best but finding it scary. I keep thinking it’s bad now but how much worse can it get. 
im struggling to change sheets, to keep on top of the medication and yes I thought there was all this help that you get at the end but I’ve had nothing really at all. 
a bed was delivered and a commode. I can’t get him onto the commode. It’s a dreadful mess. 
but he wants to die at home and so I’m trying my best. 
I want to run away. 
I feel so angry but also so sad. 
macmillan and the hospice people are not at all what I was led to believe or perhaps I’m very very unlucky in our area. 
I can’t get through to the GP. I would be on the phone for an hour waiting for an answer. I don’t have an hour to spare. 
people told me ‘ let the nurses help you ‘ 

Like you I’ve found myself abandoned and with no clue as to how to manage  him dying. I’m just so frightened and Terrified that I will make a mistake with medication or let him fall as I can’t really hold him up. 
I hope someone answers you with guidance about what to do at the end. 
I need some too. 
best 

M 

Awww m so sorry to hear this .

do you have any family support are you working ? What stage is he at ? 
my sister is with my mum I live half and hour away and I am back and forth inbetween work but then begs the question when do you give it up ? 

my sister is sleeping in the room and like you struggling by . My mums gone from ok to in the space of a week can’t stand bed bound but still doing the toilet in nappies she’s stopped eating . We ring the nurses in the day when things change but it’s a massive shock to the system I didn’t relapse she would go down hill so quick . My worry is how will we nw when she’s close to the end or will it just happen no one at all is telling us things they seem to say we are on the phone but she’s had them out in the night a few times to top up on mends and like you say hi pe often do we give these my mums on patches with top ur morphine seems to be a lot . I beg the question is all this killing her I asked the nurse the syringe driver has a bad rep and a lot of people say it can speed the process up it doesn’t seem right to do that to someone but at the same time u don’t want them in pain . 

she’s had madazilam and ever since been out of it worried we won’t ever speak to her again . 

Your not alone . 
the nurses are no way what they make out in my area also and same we don’t get any answers quick or medication takes hours to come . 

I am praying to give you strength your dad will feel comfort your with him xx

Thanks for your response 

I went and read all the bereaved chat threads. 
this helped a huge amount. 
I realised that I must not focus on my moaning about the lack of a GP, the useless Macmillan nurses or the dismissive people on the phone. All this energy and anger means I’m not focusing on him. 
so today I’m going to withdraw my expectations and just tune into his frequency and shut the world out.
 
I hope you have some peaceful time with your mother. It sounds like you and your sister and her share a lot of love. 
️️

M 

So sorry to read of your experiences. Care does seem to vary and the post covid era does seem to have made things so much worse for many. 

My Mum died of throat cancer in 2020 and she was able to die peacefully at home with good care from the Macmillan nurses. My sister lived near by and I was able to spend the last week with them both. This is a time that I treasure. Reading a book- 'Dear Life' by Dr Rachel Clarke did help with understanding the process of dying. 

My husband now has terminal cancer and I would like his death to be as peaceful as possible and at home. However, my Mum's cancer was relatively painless- I do not think that this true for pancreatic cancer.

His diagnosis is quite recent and we have been through our own anger with the delay in responses from the local GP and the lack of any face to face appointments.  We are meeting with the palliative care team on Thursday so are hoping that this will be a positive experience. 

Like you Christa I have a husband who has terminal cancer.  The difference between the Palliative Care team and the GP is so marked, they could be on separate planets.  Nothing is too much trouble for the Palliative Care team and all requests are dealt with quickly.  In contrast the GP took 6 days to process a prescription and never answer the phone and certainly no face to face appointments.  I could rant for ever, but there's no point, its what it is.