Please someone talk to me about hospice care for advanced cancer

[gaelicsheep]

I hope it's OK to post in this topic as I'm not bereaved yet, but I really need to talk to people who have been through this already. Mum has been admitted to the local hospice today to try and stabilise her as she has been vomiting for days, not even keeping medication down, she's in so much pain and anti-emetic injections are not working. She was supposed to be starting a course of palliative chemotherapy this week but she is no longer strong enough.

I'm being quick now, but I'll elaborate later as needed. Basically I live a way away and I don't want to panic (me or her) but on the other hand I want to make sure I'm there if she takes a turn for the worse. I tried speaking to the hospice today but all they did is get mum to ring me (which was lovely, don't get me wrong, but I wanted to speak to a member of staff honestly about my mum's situation).

Just now, I would really appreciate it if anyone who has been through this - losing a parent to advanced cancer - could give me a bit of insight into what happened after the hospice first came into the equation. I know everyone's different, but I'm at sea here. Will post again later. Thanks xx

Hi. Thanks so much. Well Mum has definitely been told she's terminal, there's absolutely no doubt about that . But yes I agree I think she is probably in the 2nd category and I hope she stays in that category for some time. She won't be allowed home any time soon though because they still don't have the sickness under control, and are only gradually managing to do so by the use of a syringe driver. Today my Mum and Dad were told that the vomiting etc. is now down to the cancer, not the after effects of the appalling constipation or anything, but the cancer itself. Mum is managing to eat liquidised food but nothing solid, but it is good that she does still want to eat. She hasn't got to the stage of refusing food or anything like that.

Yes, the elephant in the room. Hmm. There were a couple of colleagues who I thought of as friends, but frankly I don't any more. I'm feeling pretty hurt by it all actually, but as you say herethereandeverwhere there are lovely people to talk to on here (and my DH is pretty good too)

Hello gaelicsheep - just wanted to check in. It's good to see you're getting some more information - and it's reassuring your mum is still taking in some food.

My mum is still being cared for a home but keeps picking up infections as her immune system is weak. Currently she is very confused and acting as if she has dementia (constantly repeating herself, getting up and down - she would hate to know she is acting like this as she is a very intelligent and together woman). SIL has said it's because of the infection but I can't help think the cancer might have spread to her brain. DB is finding it hard to cope so I'm going to ask work I can take some time off to go down and help. I actually think hospice care might be helpful for my mum if only to get DB some respite.

I find at the work the people who ask after you are the ones who have been through something similar so it's possible your colleagues just don't know what to say. I found I would get a lot of sympathetic e-mails at the beginning.

It does sound like your mum is in the best place for her at the moment.

Hi Tulippa. Sorry to hear about the developments with your mum. Hope you manage to get to see her soon. xx

On my way back home after seeing Mum. She's on a downward slope and she has maybe two or three weeks at most.

gaelicsheep I am so sorry to hear that.

I am thankful that your mum is in a hospice. She will get good care and they will support you and your family through this.

Can you spend as much time as possible with her? Will your employer give you compassionate leave?

I intend to speak to them on Monday and discuss taking about a month's unpaid leave, give or take. As well as wanting to be with Mum, Dad needs all the support I can give him, before and after. Family comes first.

Hi Gaelicsheep, sorry to hear about your mum. I went through similar with my dad a few years ago. Did you get to speak to a specialist palliative care nurse who is looking after your mum? The palliative care nurse who looked after my dad was amazing.when I finally met her she was the only HCP who was straight with us about what to expect and roughly how long he had left. The others all dodged the issue. The Macmillan website is great but it didn't really help us know how long he had left.

I felt like I was grieving in advance too. So sorry you are going through this.

Hi. Thanks. Yes one of the specialist nurses asked to speak to my Dad and me the other day and laid it all out for us. Given how Mum has deteriorated we weren't at all surprised, we're just so sad and shocked that things have progressed so quickly. They have now got her on a drip overnight and she's a little more comfortable as a result. They do also seem to be managing to control the nausea better, if not the actual vomiting. Sorry about your Dad.

Hi Gaelic sheep, just wanted to say I have been reading your thread and am so sorry to hear the news. Will be thinking of you and checking in over the next few weeks. Take good care x and drive carefully x massive hugs x

Hi. Thanks something2say.

I want to add something to this thread, which is to say how wonderful the staff at the hospice are now that I've met them face to face. There is still difficulty getting information over the phone if it's a staff member I haven't met, and I can understand why. But they are the kindest, most attentive people and I have no doubt in my mind that Mum is in the very best place she could be.

That's good to hear. People in these sorts of professions are often a different sort of person - very kind and compassionate. I think that life and death happens to us all and we are all bystanders to other people's stories x it helps to have good people to lean on. Thinking of you. When are you going up next?

Tomorrow. We're going to have my DD baptised while we're up there as well. The vicar of my old childhood church, which my Dad still attends, is very kindly going to do the service in the hospice chapel so my Mum can be there. It's given her a real boost. I'm not really a religious person at all, but this has been playing on my mind a fair bit recently and I think it will be comforting for all of us. xx

Good for you x I hope it goes really well and you have more happy memories. How is your mum at the moment?

The hospice have been wonderful. They have been so kind about letting us use the chapel, and saying they'll do some catering. I imagined a small ceremony around my Mum's bed. This is just so so kind, and it's giving my Mum and Dad a real boost.

As for Mum it's very hard to say. To talk to her on the phone you would think she had a touch of the flu. But I've seen her and I know that she's already skin and bone. She can't eat a thing, not even soup. She can just about manage a few teaspoonfuls of sorbet. The vomiting is all starting up again - just the sight of food is setting it off now. And yet she still talks about trying to get her strength back when she can eat again, and she wants to be able to go home. It's heartbreaking because that just can't happen. My poor father would never be able to cope and she is not going to be well enough. It's going to be very difficult times ahead for all of us.

Gaelicsheep -

You mention that your Mum wants to go home,If this is what she wants it is possible to get "fast track" funding for end of life care at home - the hospice should be able to tell you everything you need to know and make referrals.

Thinking of you all x

Thanks. We need to talk to the nurse again I think. It's such a horrible time.

I think the going home thing is difficult.
My dad refused hospice care for weeks and the toll on my mum was awful.
Once he was admitted he relaxed as they were able to make him so much more comfortable than he had been at home.
My sister died in a hospice last year and again, I couldn't have wished for a better place for her to be.

It's such a difficult process gaelicsheep. I send you my best wishes

My dad had end of life care at home rather than at a hospice. The support was amazing. All the equipment we could need inc an electric bed was delivered and set up.

There was a nighttime carer ever night from 10pm to 7am.

The district nurse came at least once and often twice a day to sort out the syringe drivers and see how he was. She was also on the end of the phone and we could ring her anytime and she would come.

Carers also popped in three times a day to wash him, shave him, move him up the bed.

And on top of that people from St Baranabas used to pop in twice a day to do anything which needed doing. In fact we asked them to only come once a day as we were a bit overwhelmed by help.

There wasn't really a lot we needed to do for dad. We spent a lot of time sitting with him, talking to him in the day. But I wouldn't say that he needed someone with him all the time at all. Obv someone needed to be in the house all the time.

He was at home like this for the last couple of weeks and I'm glad he died at home.

I'm sorry your mum is so poorly.

Not many words of wisdom as my father died last year but at home (very near me so I was there a lot of the time).
He was determined to be at home and we, of course, respected this. It was incredibly hard for us though while he was in his final weeks. We had nurses coming in and out but it was very draining and difficult to see. People in their last few weeks can get very confused, angry or try and fight it. My father started trying to refuse painkillers, blame nurses for things or get angry at my mother telling her it was all her fault. Nothing he said made much sense and it was very difficult. Once he accepted things, he had clearer thoughts, apologised to nurses etc and we did have some calmer last few days. It was all very difficult though and once he did pass away my mother struggled to move back into their bedroom (she had had to sleep in another room as his hospital bed took up most of their room).
My mother having seen what he went through and what a toll it took on us all, has said when her time comes she wants to be in a hospice.
Your mother sounds like she is in the best place and I hope you are getting loads of support.

I am so sorry you are going through this. I wish there was more I could do than send hugs, but there really isn't :( They are big fat squishy hugs though x

I'm pleased your dad had such great care at home Viva.
It must have made an awful time slightly more bearable.

Pagwatch, most definitely. Don't know how we'd have coped without it.

Our local hospice doesn't actually admit people for end of life care, they only admit people for pain control. So I suppose they've had to invest in community based care instead. When the GP actually wanted dad in the hospice for symptom/pain control there wasn't even any space though to be honest I'm glad as I couldn't have imagined moving him the state he was in.

Thanks everyone. I am so confused at the moment. Mum's condition hasn't changed much since they managed to stabilise her symptoms. I don't know if this is expected or not. They've decided she should try to eat the odd bit of food if she feels up to it, since it seems she's going to vomit it up regardless. She finds a bit of food helpful to combat the dreadful empty feeling - we're talking maybe 4 or 5 teaspoons of egg custard or something, although she did manage a boiled egg this morning apparently. She still looks well to look at her - her face anyway. Obviously she's painfully thin and her ankles and feet are starting to really swell. But the fact that things haven't really changed in a week makes me wonder about the days to weeks talk we had, but then how long can she last while she gets next to no sustenance?

I think if my parents' house was bigger and my Dad wasn't so unwell himself then they would be thinking about her coming back home. But I know Dad just couldn't cope. Apart from anything else he is really suffering now with the emotional side of all this, and I know he can't bear the thought of lying awake every night in the same room wondering if she will still be with him in the morning. I really think the stress of that kind of situation could have a very serious impact on his health too.

Anyhow, I'm staying up here for a good few days after DH and the children go back and I'll try to get some answers about how she is doing now and whether the expected timescales have changed any. I can't see that they will have because she is still eating next to nothing, and the cancer is obviously encroaching more and more. But having said that to look at her, although she is very weak and tired and obviously very ill indeed, she doesn't look like someone who has only a week or two left in this world. I don't know, I really don't.

I am sorry you are having to go through this. Just being there with your mum will give her comfort.

My dad (20 years ago) and my DH (5 years ago) spent their last days in a hospice - both also looked relatively well but was likely because the pain control was so much better there. Neither had an appetite, there were some liquid food drinks which they drank some of but nothing much. The swelling of the ankles and feet can be an indication of the body "shutting" down, then, around a day before they passed away, they "slept" really deeply from the morphine they were having. Neither really came round after that, just odd moments before drifting off again. At least they were reasonably comfortable and pain-free and after all they had been through, it was almost a relief to watch the pain slip from their faces.

HTH

I wonder if it may be a good idea to have time with your mum gaelicsheep, where you talk and reminisce. Maybe it doesn't matter you asking exactly how long she's got and worrying about them giving you an accurate timeframe. It seems you won't know, and perhaps she will slip away into deeper and longer sleeps. So make the most of the time. Thinking of you x