Mum is terminally ill, how much help is available and when to ask for it?

[FranklyMeDeer]

My mum has stage 4 pancreatic cancer. She was diagnosed about a month ago, she has liver and lung mets, she was told there isn't much that can be done medically and she's been referred to palliative care.

She lives alone, my sister lives locally and has been spending a lot of time at Mums, our other siblings and I all live a few hours away and we're taking it in turns to go up to her so dsis can have some time off.

Mums health has declined at a reasonably rapid rate and she's now effectively trapped upstairs at home because a) she can't manage the stairs and she has no downstairs toilet and b) she can't do much at all before fatigue overwhelms her and she needs to be in bed - eg yesterday she had a quick shower, sitting on a stool, and that was enough to have her in bed for the next 24 hours.

She is under the care of the community team from the local hospice (they act in lieu of Macmillan in mum's area for community help) who saw her last week, and said at the time that she was ok to stay home for now, although she has expressed a wish for end of life care at the hospice, the time has not yet come for her to be admitted.

Today I've rung her GP and asked them to see her, as her quality of life is zero and my sister's mental health is suffering. (there's a whole other thread's worth of stuff about my mum's shitty attitude towards my sister which has been going on for years). GP suggested possible referral to social services for a care package to help her out at home.

To be honest this whole situation is completely outside any experience I have, I have no idea what to expect. It's clear to me that mum is coming to the end of her life, and emotional stuff aside, I don't now how to deal with the practicalities.

My sister can't look after her full time, due to the back story and my sister's mental health she finds it really hard to be under the same roof. She is a lot younger than my brothers and I, her upbringing was very different to ours and was, at best, less than ideal. Our dad died 20+ years ago and she's never had another partner. Brothers and I live too far away to be there any more than a few days at a time so she gets respite.

How much outside help can we realistically expect? At what point would she be admitted to hospital/hospice for end of life care? Is there a chance that we may have to deal with her dying at home? How do we know when to ask for more help?

I have been told by my employer that I can take time off when I need to, but I doubt that this would extend to weeks/months off and still expect a job to return to.

I could waffle on for pages about all the issues we have with our relationship with Mum and all the emotional crap this is stirring up, but focusing on the practicalities for now is keeping me sane.

It doesn't help that Mums sisters think she's some kind of saint, and can't understand why we're all so wary of her. My brothers are being passive and saying "well done" a lot and my sister is falling apart. I'm losing it here and I don't know what to do.

[HummusForBreakfast]

I donit have any experience but I know Marie Curie also comes and visit people who are terminally ill.
It might be worth asking them what they could do too.
I think you need to be referred to them by your GP.

[Bobochic]

OP - my mother died of pancreatic cancer, seven weeks post diagnosi, in April 2015. I live in Paris with my family, my sister lives in Amsterdam with her family (and her DH was very ill with brain cancer at the time - he has since died) and our father was old and infirm.

Take all the help the hospice will give you! Palliative care is great but you must ensure your mother requests the maximum she can have. And she will need pain relief - pancreatic cancer is horribly painful and there is no point pretending otherwise.

[Bobochic]

If a care package is on offer, seize it now!

[Chinnygirl]

Do all or some of her kids have enough money to hire a private nurse to give dsis more help? For my gran we hired a nursing service daily for two months and it took the pressure off of everybody.

[EsmesBees]

It's a horrible time OP. When my mum was terminally ill but still at home the council provided a carer twice a day 7 days a week and a weeks respite in a hospice. This wasn't enough and we had to fight to get it. In the end it was yet another admission to hospital and her liaison nurse who got it sorted for us. My advice would be to ask for as much help as you can get now before things get worse.

[EsmesBees]

And even if McMillian are not contracted by your council you can still pay for their services privately.

[PikachuSayBoo]

I'm sorry you're going through this.

When my dad was in this situation we got. A carer overnight all night. District nurse came most mornings and often in the afternoon as well. Then two carers came from the hospice for three short visits three times a day. Like a 10-15 min visit to do personal care type stuff.

Dad lived with his wife at the time but they still provided overnight care. This would have been for the last couple of weeks. It was all free.

Do be aware there isn't always space in the hospice at the end, there wasn't for dad. A hospital bed and a commode was provided. Dad had a morphine pump at home which the district nurse sorted out every day.

[FranklyMeDeer]

Thanks for your replies. Honestly it helps just to feel heard.

A big part of the problem is getting her to admit she needs help. She sees it as giving up I think. She tells medical people and visitors that she's fine, then my sister finds her rocking (in pain???? she won't say) at the bottom of the stairs unable to get back up to bed. Every time I try to put something in place to help (suggested a stair lift for instance) I get bollocked and told that I should be more positive, I find it so hard to stand up to, I revert to being six I suppose. Big girl pants required. I'm so conditioned to do as I'm told that even ringing her to let her know that I called the GP resulted in my being shaky and feeling sick. Most people who know me would be shocked that anyone could have that effect on me.

The GP suggested the possibility of a care package, but in the same breath said that, if Mum is of sound mind and refuses help, that there isn't much they can do to persuade her otherwise. My sister is heading for a nervous breakdown and I feel so fucking useless. Mum can't be left on her own. My brothers are being really passive about the whole thing, lots of supportive messages and they go and help at weekends but don't seem to be able to help out with the awkward conversations or talking to outside agencies or other relatives. At the moment, dsis deals with mum on a day to day basis, I deal with dsis, GP and hospice, and aunt accompanies mum to oncologist appointments.

If she won't accept help then I can see me having to take extended leave of absence from work to go and look after her. I must sound cold and heartless, but I don't want to, I have just started a new job that I love, I'm in the middle of training which can't really be interrupted and my relationship with my mum is only marginally better than my sister's.

[iseenodust]

You are all facing a tough time
Ask if the hospice team can reassess as there has been a rapid deterioration with your mum. There may not be a bed yet but you might be able to get a day place a couple of times or a slot for a respite break. Admission to stay may not be until they feel there are only a few days.
Ask for help as you feel more need arises. Get carers allowance to help with finance of an overnight carer so your sister gets some sleep.
Talk with your mum about pain relief and ensure her view is entered in her medical notes.

[FranklyMeDeer]

Oh wow thank you, x posted with more replies

I'm mentally preparing myself for the possibility that there won't be a bed for her and we may have to manage at home - I'm the kind of person that likes to be prepared and proactive and I'll feel more comfortable knowing how we'll deal with it practically. Good to know that overnight carers and daily visits are available.

Private nursing is (financially at least) a possibility, obviously it depends on cost - does anyone know roughly how much per week / night? Again I get the sicky feeling that mum would go apeshit though.

Let's see what the doctor says tomorrow. Brother is going to be there this weekend. Mum has an appointment with her oncologist on Monday and then the hospice team are due to visit Tuesday or Wednesday.

[iseenodust]

If you mum is used to being the decision maker (and to be fair we would all want to be in this situation) then it may be helpful to ask the community team to suggest a night carer.

If you want to be prepared and have a greater understanding of what is to come then this link is quite factual and doesn't wrap matters in cotton wool. [http://patient.info/doctor/end-of-life-care-pro]

[SheepyFun]

Sorry for what you're going through.

This is somewhat out of date, but 8 years ago when my family was looking at putting more care into place for my grandfather, they were quoted £50k per year for a night nurse, so about £1000/week. He lived in the SE, so an expensive area. I guess it would be more now.

[NoSquirrels]

Will she take advice more readily from others?

i.e. can you persuade your aunt to persuade her; can you talk with the GP honestly about the difficult relationship and suggest it is better advice comes directly from a HCP; can you pre-warn the hospice team of how your mum is on a day-to-day basis but that she's reluctant to admit it?

Can your sister speak honestly with the team about her need for extra help?

Practically: would a bed & commode downstairs be better than being trapped upstairs near the bathroom, or is it actually better for your Mum to stay where she is comfortable?

[FranklyMeDeer]

The GP saw her today. She has no immediate concerns in that there is no infection or dehydration evident, however she is very breathless and fatigued. He told Dsis that we are coming towards the end now, which we already knew. He said that she is OK at home for now and we'll review again early next week, she sees the oncologist on Monday and the hospice team on Tuesday. He suggested that arrangements may well be made then for her to be admitted.

Brother 1 will be there shortly so that Dsis can have a break. I think I may have to go across on Sunday. Timing couldn't be worse really but what else can I do. I'm hiding off arranging nursing myself for now as if she is to be admitted next week, there's little point as we can manage until then. I'll speak to dbro tomorrow, see what he thinks about her care.

Thanks for your posts. You know, when there's no one in RL stepping up, its such a relief to be able to float on here and chat to people who really know what they're talking about.

iseenodust that link was really useful, thank you.

[FranklyMeDeer]

Float? Lol. Post on here.

[annandale]

I'm so sorry. I would express some of your distress to the palliative care team.

[AnnaT45]

I'm so sorry for what you're going through. I just went through it over summer. Mum passed away six weeks after being diagnosed. She never really got back home and went from hospital to hospice so I can't offer much practical advice to where you're at now. But I would speak to the hospice. They are the most wonderful places and sure they'll will provide you with the support you need for this stage where your mum can still be at home.

My mum was very open about her funeral, and her arrangements. This made life so much easier for us all as we didn't have to second guess what she wanted. As hard as these conversations are I would try have them. I would also ask your brothers to help out a bit more to give your sister a break. Could they maybe take some time off work so you can all share it?

I really feel for you, it's the hardest thing I've ever gone through but the hospice was marvellous and I'm so pleased mum was there.

[iseenodust]

Not wanting to read between the lines too much but if the GP says admittance to the hospice could be as soon as next week then you might want to make that visit across tomorrow. When stronger pain relief is required & administered the periods of consciousness can be a lot shorter.

This is a terribly hard and emotionally draining time for you all. Be kind to yourself as well as your mum & Dsis.

[FranklyMeDeer]

Thank you.
I'm going up tomorrow to spend a few days there. I'd like to be around for her appointment on Monday and the visit from the hospice team on Tuesday.
I'm so very sad and tired but this needs to be done and will be got through somehow.

[FranklyMeDeer]

We saw her consultant today. She isn't going to be able to have chemo as she's just too ill.

The whole experience was a nightmare. Getting her out of bed, downstairs, into the car etc. She couldn't sit up for long whilst we were waiting to be seen, she was having to lean across me to be flatter. Then when she sees the doctor she tells him she's managing fine and she's not in any pain.

Oh well.

Tomorrow the hospice nurse is coming to see her at home. We've had a bag of drugs, morphine etc, delivered by the chemist today - I think this is the 'just in case of emergency' drug stash for the district nurses etc. Should I read anything into that in terms of timescales?

I'm really hoping that the hospice nurse can offer us something more in the way of support. Obviously I don't want to pack her off to die, and it feels like that's what we're doing to her by asking for help / an admission. But we are all having to travel to look after her and we're all knackered. She gets up several times a night so it's impossible to sleep here. We all have jobs and families that need us at home. It's just so hard being pulled in so many directions.

[FranklyMeDeer]

I should add, that we have no idea what her prognosis is, she doesn't want to know, which is understandable of course. But if we knew roughly how long she was likely to be home like this for, we could make plans properly and maybe put some modifications in the house such as a stair lift. But if it's only going to be a week or two then we can muddle through as we are.

[Feefeefs]

Ensure you speak to the palliative care nurse yourself alone, palliative care is not designed to just be for the person that is dying it is for the whole family. The consultant will know your mother is in more pain than she is letting on and struggling more than she is admitting but it would be worthwhile to phone the specialist nurse also, most cancer teams in hospitals have one assigned to them and explain that you are struggling, not being able to shower or get up stairs is reason enough for massively increased care and/or hospice admission. If you don't already have their number phone your consultants secretary through the hospital switchboard and ask them.

[FranklyMeDeer]

Thank you. The specialist nurse was there today. All she seemed to be able to add was that we should discuss it with the hospice team tomorrow.

I last spoke to the hospice nurse a couple of weeks ago, she said that because mum is of sound mind then she won't be admitted until she says she wants to be, and at that point she wasn't ill enough anyway. She's definitely deteriorated since then but is in total denial about how ill she is and the effect this is having on everyone around her. She tells all the nurses, doctors etc that she's fine. So far they seem to be taking her word for it over ours. I'm scared that we'll be told tomorrow that we need to just get on with it for an indefinite amount of time.

[iseenodust]

I appreciate fear you are facing and I'm going to put some things the other way round:

It's not packing your mum off to die, it's hoping she has the best care available.

She is in denial, she is from a more stoic generation and is frightened.

They are taking her word over ours, they are treating her with respect and maintaining her dignity.

I hope that doesn't come across as insensitive. The patient should be at the centre of decisions however, Feefees suggestion that you ask to speak to someone alone is spot on. It's not going behind your mum's back. You are spelling out how it is. The one thing everyone will want to avoid is your mum being admitted to hospital. Be clear family cannot be there 24/7.

[FranklyMeDeer]

Not insensitive at all isee I need to be told this, I know exactly what you mean and it makes sense. I'm so tired and stressed that I can't see beyond the end of my own nose sometimes.

The hospice nurse is coming today, I have a list of concerns and questions that I will be able to discuss with her.