Please someone talk to me about hospice care for advanced cancer

(72 Posts)
gaelicsheep Mon 06-Jan-14 17:44:20

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

Meglet Mon 06-Jan-14 17:57:07

Sorry your mum is so poorly sad.

Like you said, other situations are different but I will give you the brief run down of what happened when my dad was admitted (St Michaels, Basingstoke). He had prostate cancer and after a couple of days assessment they established he had a large tumor that was going to stop his kidneys working withing a few days.

The hospice were amazing, they allowed my sister and stepmum to stay in his room with him 24/7 so we could help care for him, although it was a large room with 2 beds and a reclining chair in it. He was given maximum painkillers and they were upped when the pain started to kick in again. The hospice staff were wonderful and explained all of dads treatment to us as he was no longer responding to much. He was only there a week but he was treated well during his last days.

I'm not sure if confidentiality is different in a hospice but I hope the hospice would be able to give you some basic information on your mums treatment.

((hugs))

Jinglebells99 Mon 06-Jan-14 17:59:07

Sorry to hear you are going through this sad. My fil died last year. He actually died on the day he moved to the hospice. But it all happened very quickly for him, he died a month after going into hospital for tests and never came home, and also the hospice was full and he had to wait for two weeks for a bed to become available. Can you speak to your mother's consultant? I hope they stabilise her and she starts to feel better. My fil thought he had maximum of five weeks but he actually passed away very quickly. We were up at the weekend, but my dh had to do something at work so we returned home, and he passed away two days later. This may be unusual though. So sorry. Hugs.

3littlefrogs Mon 06-Jan-14 18:15:17

If you possibly can you must get your mum to sign a letter giving her permission for the doctor to discuss her care with you.

Hospices are really good and will give her the best care.

I am so sorry you are going through this.

gaelicsheep Mon 06-Jan-14 20:07:43

Thanks everyone. So you think that's the problem 3littlefrogs? Could be I suppose, but no one said that to me. I just felt rather patronised, and of course it was lovely I could speak to Mum but it must have been obvious that wasn't why I was phoning. All the nurse said to me when I was transferred to the ward (by a very nice and helpful receptionist) was that Mum was there because she was suffering "a bit of nausea". Now I know no one can give me certainties because there are none, but I just want - I need - some idea of where she is along this journey. My Dad may well have asked these questions but I don't want to upset him by asking him to elaborate on things that must already be so hard to talk about.

I am really struggling with this whole situation. I haven't been able to cry once since we discovered Mum was terminally ill (and the very rocky road to that is a whole other story that is described more fully on [[http://www.mumsnet.com/Talk/general_health/1932129-Sick-mum-sick-husband-full-time-job-two-children-WWYD? another thread]. I seem to be feeling so negative and almost wishing things to move along to the inevitable, I think I must be a hard and wicked person. But actually I think I might be suffering with what they apparently call "anticipatory grief", and that because this is not accepted by "society" - where there's life there's hope, she's still here, and all that - I feel that I can't let the feelings come. I don't know how much longer I can bear feeling like this, and these feelings are all about knowing she is suffering and wanting a swift and peaceful end for her. I'm rambling and I need to get my DS to bed, but I hope this is making some sense to someone.

gaelicsheep Mon 06-Jan-14 20:08:34

Sorry:my other thread

PortofinoRevisited Mon 06-Jan-14 20:13:55

I totally understand how you mean. The outcome is inevitable - nothing you can do to change it. You don't want her to suffer and want it to be over and need the necessary information to know when you should go to her. That doesn't make you hard and wicked - you have other responsibilities you have to balance. (((hugs))) though - this must be really hard on you.

PortofinoRevisited Mon 06-Jan-14 20:18:08

Slightly different but I live abroad and have had a few scares with my now elderly GPs who brought me up. Sheer logistics mean I cannot afford a/the time off work b/the travel costs for what may or may not be IT. It is a worry. With your dh ill too and children to consider, I totally get it makes the logistics so hard for you.

3littlefrogs Mon 06-Jan-14 20:22:51

gaelicsheep - patient confidentiality is a big deal these days. It would be worth finding out if this is an issue. Is there another relative a bit nearer who could visit and speak to the staff with your mum present? It is possible to get verbal agreement and have the staff document that your mum is happy for her care to be discussed with family members.

TBH, and I am sorry if this is distressing, but I am both a nurse, and a recently bereaved daughter; I think you should make arrangements to go and visit your mum asap. That is the only way you will be able to find out what you need to know in order to plan.

I am so sorry - it is an awful situation. IME hospice care is usually very good.

crazykat Mon 06-Jan-14 20:27:28

I'm so sorry you're going through this. I lost my mum to cancer in November. It's a bit different as she stayed at home with my dad signed off work and a hospital bed and carers brought in. My mum had vomiting which could only be helped by a syringe driver delivering a steady flow of anti emitics stronger than tablets. My mum couldn't even keep water down when the syringe driver was started. The Macmillan nurse wanted her to go into a hospice for this but mum really didn't want to leave home so they brought in a hospital bed and carers as my dad could no longer cope alone (he's late 50's).

I think you need to have a proper talk with your dad or get your mum to give permission for her doctor to talk to you. I don't want to worry you as everyone is different but when it got to the stage where my mum couldn't keep anything down she didn't have long left. I really hope this isn't the case for your mum but you really need to speak to someone and find out how bad your mum is even if its upsetting.

In my experience the hospice were quite accurate in knowing when my relative was going to die when it came to the last week and days, though I can only speak from my own experience. Can you visit and speak to the staff in person?

Sorry you are going through this, it must be really hard for you.

gaelicsheep Mon 06-Jan-14 21:00:01

Hi again. Yes that's exactly what's happened with my mum, they've put her on a syringe driver to try and get this vomiting under control. She vomited three more times within an hour of arriving there. sad BUTI just spoke briefly with my dad, and he reckons they have found that there is a blockage and with the aid of "depth charges" (so delicate is my Dad) they are managing to clear some stuff out. That's good of course, if they can clear some of what has been backing up maybe that will relieve some of this and allow her to eat a bit again. But when I asked Dad if they thought that the painkillers etc. were causing the constipation he couldn't say. I guess they won't be able to tell properly until they've managed to clear things. I don't know if the implication of this is that she will improve and they'll manage to get her strong enough again for chemo. It seems so unlikely, but that could just be my doom mongering again. She's been through so much, and the chemo is only palliative, I do wonder about her putting herself through that as well just to buy a few more months.

Mum's cancer is a rare uterine carcinosarcoma that has spread to the peritoneum and elsewhere. She had 8 litres of ascites fluid drained a couple of months ago, when all this started coming to a head, but she has since filled up again and there is no fluid to drain anymore. It seems that the cancer is widespread throughout her abdomen. sad

Every bone in my body is telling me I should be there, but if she doesn't want me to go yet what can I do? My DB is going tomorrow as he has fewer priorities to juggle and he's closer, but I'm not confident I'll get a clearer picture from him either. He's already said he doesn't want to have the conversation that I want to have with the hospice staff. I guess I just have to sit tight and hope that I will pick up on the signs if things start to turn again for the worse.

tulippa Mon 06-Jan-14 21:41:19

Hello gaelicsheep. I wandered onto this thread as I was having similar thoughts. My mum was diagnosed with terminal pancreatic cancer in August and was told she would have about 12 months but things have moved on much quicker than we expected.

She is staying with my DB and SIL about 200 miles away and I constantly feel I'm not doing enough to help, but like you work full time, have 2 DCs and a DH who was ill (haven't had time to read your other thread - he is better now.

Have spoken to SIL today who said it's probably a good idea to make some more visits soon as mum won't have much time left. She's not at hospice stage yet but as she's deteriorated so rapidly lately I'm not sure what to expect.

I probably haven't provided much practical help with this post but will definitely keep checking in on this tread. Just wanted to let you know there's someone else going through something similar. Thanks fir starting this. ((Hug))

Gaelic. Go to your Mum.

My DH died of cancer 8 months ago and he deteriorated so very fast. Don't miss the opportunity to see her.

Painkillers do cause awful constipation, but there looks to be little doubt she is very poorly at the moment. No matter what they say about not needing you at the moment, it sounds like you need to see them. Don't put it off.

gaelicsheep Mon 06-Jan-14 22:16:04

Hi, thanks. Tulippa, so sorry that you're going through this as well.

I have my doubts that this could be a simple episode of severe constipation. Sure Mum's had problems with that before, and has always complained about the effect painkillers have on her, but this is different. Even before her CT scan, about 6 weeks ago now, she was worrying about having to drink fluid beforehand as she couldn't hold down more than about half a glass of water. And then when she had the ultrasound scan last week to see if there was any more ascites fluid to be drained, surely they would have spotted if there was this kind of blockage and done something about it then?

My plan was to go up this weekend in any case, as she was supposed to be having her first chemo treatment on Wednesday. I think I can do nothing else but stick with the plan, although I think I'll go a day earlier than I planned to have a bit more time. It's not that I don't trust my Dad is telling me the truth - I do. It's just that inevitably that truth must be going through a filter first of what he is able to accept and in turn to vocalise to me. It's like I feel that without physically being there I can't actually get the information I need to decide if I need to physically be there. Fingers crossed they can make her more comfortable over the next couple of days.

tulippa Tue 07-Jan-14 07:51:36

I can understand you wanting to get down there and see what's going on for yourself as yes, when someone is describing what's happening it will be influenced by how they feel about the situation.

Constipation is a major issue - caused by the cancer itself, then painkillers, lack of appetite so not much moving through the system, lying in bed all day....and it can't just be left to sort itself out as it can cause problems and major discomfort. It will also put a patient off eating and medical staff will be doing everything they can to encourage this.

I'm rearranging plans now to go down - work did say they would be as accommodating as possible and I haven't asked too much of them yet as I didn't want to start calling in favours until I really needed them. I'm lucky that I have extremely helpful PILs who have great through all of this as well.

Would have gone down this weekend but it's DD's birthday and although she is quite good at dealing with this sort of stuff I'm not sure it's fair on her to have to cope with all the emotional side at that particular time - we already can't organise a party for her as we're not sure what will be happening now from one week to the next. Or should we go down? Will it be too late otherwise?

I would go and see you mum in your circumstances - hopefully to get a clearer picture of what's going on which will help you deal with the situation overall.

gaelicsheep Tue 07-Jan-14 13:01:15

Thanks Tulippa. It's so hard isn't it? Good luck with what you decide.

The good news is that whatever they are doing to my Mum seems to be having an effect and they are clearing out a load of stuff. She was able to hold down some juice this morning so that is definite progress. They still haven't determined the cause of the problem but I'm afraid I do think it will turn out to be the cancer squeezing and obstructing her bowels. Anyhow, what matters right now is that she is feeling a lot more comfortable, which is a great relief.

offblackeggshell Tue 07-Jan-14 13:13:54

When my DM was finally admitted to a hospice with terminal leukaemia, we found that communication, and their willingness to speak to family members (living abroad) on the phone was made much easier when they had "a face to put to the name". If it is possible for you to visit, that might really help.

It may be that there isn't anyone around who can give you the sort of information you ask for. In our experience, the hospice is mainly staffed by nurses - extremely talented and experiences nurses, who felt that only the consultants (who largely were based at a nearby hospital, were the only ones who could give that sort of information. You may find that finding out what times a consultant is available to talk to you might help. In our case, this was after rounds, but before returning to the main hospital - around 1pm - each day.

You might also find that they are not viewing admittance to the hospice as any indication of being near the end for your DM. We had a real battle to keep our DM in hers, despite it being the only place she could actually be properly cared for, due to complex needs. Apparently most commonly now they are used as a sort of staging post, in times of acute problems for those living with terminal illness.

I have to say though, that I was, and remain, in complete awe of the staff at the hospice. We could not possibly have asked for better, more caring care, from anyone.

gaelicsheep Tue 07-Jan-14 13:22:34

Yes offblackeggshell, I do think that is the case here. I will admit that I heard the word "hospice" yesterday and I panicked, because like most people I think of them as places that people go to die. My Dad did explain to me that she was being admitted to stabilise her with the aim of sending her home again, and that seems to be happening which is great.

I'm just in such a state of high alert at the moment. As I've said I feel like I'm grieving in advance, but due to some self-protection mechanism I am completely unable to let go and have a good cry. I really think I need to. The tears welled up for a minute there yesterday, but they've subsided again. I do think my feelings are all about my Mum and being unable to bear the thought of her suffering, so knowing that she is more comfortable is making me feel a whole lot more relaxed.

sherbetpips Tue 07-Jan-14 13:23:39

The hospice are very unlikely to discuss care or prognosis over the phone. they will want to sit down with you and discuss it face to face so that you fully understand. Going into respite care isnt always a sign that it is nearing the end. many patients go in and out several times and sometimes just for respite care. There is no magic way of knowing what stage she is at but having a hospice place is wonderful as you know that they will be there to look after her and keep you informed.
My FIL went in several times although sadly he eventually died in hospital due to a bad bout of pneumonia. the care they offer is second to none.

gaelicsheep Tue 07-Jan-14 13:27:48

Sherbetpips - thanks, that does indeed make perfect sense. I've been thinking about this overnight and I realise that they can't just go discussing very difficult topics with someone who is essentially a complete stranger over the phone. It was very good of them to pass on to my Mum that I'd phoned, and a relief to hear her voice.

I really am much calmer today and looking forward to seeing Mum on Friday. I do intend to try to get the chance to speak to someone from the palliative care team while I am up there, to break the ice and, frankly, so they know I care. I dread how it must look to them - me, her own daughter, not being there - but hopefully they understand how complicated life can be.

olimogadoodle Tue 07-Jan-14 13:33:52

Hi, I work in end of life care so have a little bit of insight (although am not a trained Nurse or GP), so sorry you are going through this, like others have said palliative patients will often go into the local hospice for symptom control to allow them to then be at home (if that is what they wish).

Your Mum may have her own named specialist nurse at the hospice who also visits her in the community, this person (if she has one and your Dad or District Nurse may know) would be a good person to talk to to get an overall picture of what is happening, the District Nursing team also may be able to help but as others have said it may be an issue of confidentiality but if your Mum is discharged I am sure someone will be visiting regularly or you could request a visit while you are going to be there, I am sure they will talk to you face to face. All the best at this difficult time.

gaelicsheep Tue 07-Jan-14 23:31:28

Thanks olimogadoodle. From the sounds of it I think Mum will still be in the hospice when I go up at the end of the week so I'm hoping to get a chance to talk to somebody face to face. She has definitely improved since yesterday but is still barely eating or drinking anything, still feeling nauseous and still vomiting after the smallest amount of food.

gaelicsheep Wed 08-Jan-14 13:19:45

Oh dear, I was awake most of last night thinking really morbid thoughts about what happens to people when they die, these stories of people seeing dead relatives, the bereaved seeing the dying, etc. etc. It's no good for me to be thinking all this stuff, I know.

Friday cannot come soon enough, I can tell you. I feel totally unclear about whether the aim of this hospice stay is still to stabilise my Mum enough that she can still try to get strong enough for chemo, or whether we've gone past that point. I gather they're not really monitoring or worrying about what she's eating and drinking which surprises me, but then I read some stuff about how hospices don't tend to intervene with that kind of thing, don't use IV drips etc. unless family wants them to. Is that true?

I'm rambling. Just need to "talk" to someone I guess. I'm waiting for my Dad or brother to call me after seeing Mum this morning.

Oh and I'm feeling really sad that not one single colleague at work has asked me how things are going with Mum since coming back in the New Year, despite knowing that I was having her with us at Christmas and hearing the word hospice bandied about on the phone. sad

herethereandeverywhere Wed 08-Jan-14 21:12:28

Hi Gaelic I'm so sorry to hear this about your mum. I was looking on here for a friend whose husband has terminal cancer but I couldn't read your last post and run.

Re: the first thing you said - have you read the information on the Macmillan website? It's very honest about what happens when people are dying of cancer - the symptoms, what it feels and looks like, how they might be treated and cared for. I actually found the information comforting, although I am the sort of person who fears the unknown more than the full picture.

I'm sorry that your colleagues are avoiding the elephant in the room. People are so scared of upsetting others/seeing them cry they often say nothing. You can always talk here on mn.

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