My mum has terminal cancer - what can we do?

[lunavix]

I found out on the weekend that my mum has terminal lung cancer, with the likelihood of her only having between 2 and 5 years to live. It's a bit of a shock, I have a very poor relationship with her but nonetheless, still my mother.

I see her rarely, maybe once or twice a year, but we've talked on the phone since, and a friend of hers phones me a lot (usually along the lines of insinuating I'm a terrible daughter for not taking my mum in to live here). According to her friend, she has lost all the sodium in her body due to this cancer, and she has 'gone a bit bonkers' (this is her doctors words when I phoned him)

She doesn't really know when it is, she thinks christmas is next week, she wants a cat (she hates pets) and shes driving all her friends away as she doesn't recognise or trust anyone. Her friend says that shes frequently unaware of her actions and has become very hard work, and she's bowing out of taking care of her as its stressing her out (fair enough I guess, she isn't family)

I've contacted her doctor, who says there's nothing we can do as her mental state is a result of physical illness and not mental illness.

I don't know entirely what to do, or even that how I feel is valid. I feel so so terrible for her, she isn't exactly young but this news and the treatment must be horrific to face. She asked to come up for christmas, which I've (begrudginly although I feel terrible for that) agreed to, although like I said she thinks its Christmas this weekend....

Because of my line of work I really can't have her here to live, and deep down I don't want her here. I feel evil saying that but my childhood with her verged on child abuse and I swore I'd never had her around my children I just don't know what to do.

Does she own her own house or does she have money? I mean can you organise her affairs so that she has care and is comfortable? Do you have siblings? and how does your oh feel?

what a difficult situation for you. i don't think i have any answers but didn't want to read and run. my mother died of cancer when i was very young.

where does your mum live? is she at home/hospital/hospice? does she have carers if she's at home?

do you have any other family?

does she get help from social services? are there people who can come and help her?

I take it you have no siblings?

My sympathies to you and your mother. What a horrible thing to have to face. I was up against something similar in September when my mother had a stroke and for a while lost her memory of everything and basically became a different person. I would not have to have cared for her as my father is still alive and well, but I did face the posssibility of having to persuade him that he did not have to care for her alone (something they have always promised each other - that if one got ill the other would care for them and not put them in a home). Fortunately my mother got better but for a time it seemed as though my father was going to throw the rest of his life away caring for someone who was litle better than a vegetable.

Is your mother really getting to the point where she can't live alone anymore? If so, there are homes for people unable to care for themselves. I know it is hard to face putting your mother in a place like that, but what is the alternative? You can't care for her 24/7. Putting her into the hands of professionals would not mean you had abandoned her but that you were giving her the best care at your disposal. What do you think?

if her physical illness is making her mentally ill - surely she is still mentally ill - whatever the cause ?

It sounds like she is no longer able to live on her own - so she needs to have some sort of care - surely the doctor should be able to point you in the right direction for arranging this ?

How old is she ? Maybe you can get help and advice through the local Age Concern. Also maybe there is a support group for cancer sufferers that may be able to help.

I don't understand why the doctor says they can't help because her condition isn't because of mental illness? She needs the same sort of care as if it was - can you speak to your own GP/HV about the situation and see what they suggest?

Please don't feel evil, lunavix - having her to live with you would be difficult even without your childhood, and feeling as you do it would be terrible

lots of sympathy lunavix . It sounds a horrible situation.

I have always said I would never have my father living with us however much he needed it (he's quite young and healthy so far so not an issue for now) so I can imagine how hard it must be to have to actually consider it for a parent you've got issues with.

I do think it's reasonable to put your children first. and of course your job matters too.

Hi

I used to work for Macmillan Cancer and they have a fab info telephone line if you click onto the link I gave; please telephone them and I know you will get the best advice.

Your Mum still ahs years ahead of her, its important that she is helped to get the best of those years, not experience them in a fuzz.

She's 60 in May, so don't know if she's old enough for age concern?

She has a carer come in the evening to check on her, but doctor says shes not eligible for more help. I have a sister who lives abroad, but they haven't talked for many years (after falling out, my mother verbally and emotionally abused my sisters dd for a while - who was I think 10 at the time)

She has no money, only a small rented flat which she can barely afford. We don't have any extra money to support her with....

Ok Money

Macmillan do grants for cancer patients, they WILL help with that

Please telephone them, they a re ACE and they are the EXPERTS

I really think peachyclair is right - get onto macmillan.

Lunavix, I was in a slightly similar situation with my mum. She had terminal lung cancer and was given about a year to live. Her reaction to the news was to drink herself to death (she already had major problems with alcohol).

She was unreasonable, demanding, unpleasant (incontinent) and frightening. There was no possible way I could take her into my house, so in the end we tried to make things as comfortable and as safe as possible for her in her own home. We had meals on wheels delivered, we arranged for the local shop to deliver food, household bits and wine (we couldn't stop her drinking, we just wanted to stop her from passing out on the street), and my sister, aunt and I visited regularly. If your mum has a private pension it would be possible to get a lump sum paid upfront to give her some financial security. As my mum wasn't mentally capable I also became her legal representative (sorry, can't remember the technical term). She was a similar age to your mum - 57 when she died.

I don't know if that helps or not really, sorry! It's completely understandable that you don't want your children involved in this, so you really don't have to feel bad about anything. The situation with my mum made me realise that imminent death does not resolve all relationship issues...

So sorry you're facing such a difficult, complicated situation Lunavix. My mum died of cancer in Feb 06 and I had a similar relationship with her to what you decribe.

We found out to late that you can request visits from Macmillian nurses, so I would look into that if I were you.

Try to think about how you would be happy for the next couple of years to pan out. Offer what you can offer to your mother and don't feel guilty about the rest. Try to set up some care systems (like meals on wheels) to be in place for her as best you can.

And don't feel guilty about protecting your own children. That is important and your responsibility as their mother.

Take care, thinking of you.

Peachy - thank you very mcuh, I've contacted them and they've put me onto social services

MrsWednesday - sorry to hear your story. If you don't mind me asking a few questions - was she like that before the news or did it change her into being unreasonable? And (I'm so sorry to be personal here, feel free to not reply) was it literally the drinking that killed her? How long did she live after diagnosis?

And don't listen to her friends who are judging you and who don't really know or understand the situation. Try to ignore/dismiss their comments as best you can. They would probably be saying something different if they knew the full facts.
x

Lunavix,can you find out more about the sodium depletion?Something like that should be relatively easy to fix.

Lunavix, thought I could reply to a couple of q's you ask mrs wed as well...

My mum became very unreasonable and irrational and this was an effect of the drugs and pain relief she was on. Sometimes it would be worse than others.

And when my mother was told it was terminal she lost the will to carry on COMPLETELY. She was given 6-9/12months and died within 6 weeks. The staff at the hospice were really shocked. What I'm saying is don't underestimate how her mental/emotional state will effect her physical illness.

eca - thank you and I'm sorry to hear about your mum too.

It's amazing how the guilt you feel as a mum can suddenly be twisted into the guilt you feel as a daughter. Like I said, I always swore I'd never let her be in my childrens lives, she's seen ds perhaps 6 times, and dd once, and dh and I discussed stopping seeing her once dd was approaching 2. I know this sounds so stupid, if you cut someone off you don't give it a date, so I suppose my heart has never been entirely in it. But I didn't want dd to ever 'know' her incase she was treated like my sister, niece and I were. And at the same time, I feel terrible as I'm the only family she really has now, and I don't want her to die alone. I couldn't wish that on anyone.

And yet, deep in the back of my mind, all I can think about is Christmas! About how it's dds first christmas, and my mother is the last person I want here. Yet she's still coming, because I can't bear anyone to feel sad, espeically when they're so terribly ill.

How stupid do you get.

That's not stupid at all. You're bound to be feeling all these conflicting emotions. Don't give yourself a hard time.

As my mum got worse I found I saw her more as a very sick woman that I knew and could offer some level of care and support too. I didn't ever have that mother-daughter realtionship and it wasn't going to suddenly appear because she was dying (she didn't want it to either, maybe it would have been different if she had, i don't know). It was that feeling of duty because she was family that made me see her more and try to help.

Thinking of you as you try to tackle xmas this year. It's not easy for you, esp with your sister not in the picture.

I don't mind at all Lunavix. Technically it wasn't the drink that killed her - she died at home so we had to have a post mortem and that concluded that it was the cancer that did it, but I think drinking a wine box a day (and smoking 60 cigarettes) probably didn't help.

I was really interested in what you were told about sodium depletion causing mental instability - it was never mentioned to us at all. My mum kept it together until Christmas (she was diagnosed in September), then in January started her self-destruct mission and died in August - she was given 12 months to live and died 11 months after diagnosis.

Eca, it is so reassuring to read that you dealt with it in the same way. Such wise words about ignoring what other people think too, I found it really hard to listen to well-meaning but completely irrelevant advice from people who had no idea of what it was actually like. Arrgh.

Lunavix, your mum has, by the sounds of it, pushed people away. So you really, really shouldn't feel guilty about her (I know it's so much easier to say than to do!). Perhaps just play it by ear - if the situation deteriorates perhaps you could arrange to visit her on Boxing Day, leaving the kids at home? At least if you visit her you can be in control of how long you are there.

There are sadly issues around cancer and mental illness- my best friends mum had a drink issue and pre-senile dementia at 39, then she got breast cancer. The breast cancer ward wouldn't take her because of the dementia, and she eventually passed away at home with only paliative- made it to her daughters wedding with days to spare.

its so wrong that cancer famillies have to fight for every bit of help, it seems endemic in this country that only those who shout loudest get help, when the most needy often cant ask at all. I know when I watch all these road enhancement schemes (at home they spent 20K on blue tiling ) and things I want to yell yes- but AFTER the sick, young, disabled and elderly have got the basics.

Lunavix, my MIL was diagnosed with terminal (bone) cancer a few weeks ago. Scans show that it has spread to the lung and elsewhere and she is not expected to see Christmas. Her situation was that she was still living in her own home but given the diagnosis has rapidly declined. Her children (including my dh) have moved her into a nursing home as she very quickly began to need care 24/7. The medication she is on has made her demanding and somewhat irrational plus she wants the whole thing to be over as soon as possible. Sounds like a familiar story reading other posts here.Can only second the advice about palliative care nurse visiting, please get in touch with the MacMillan people.

Would it be possible to move her into a nursing home nearer you? Does she own her own home? At least then you could pop in and see her on your own terms and not have to worry about her so much. With the issues you describe there's no way you should have to care for her in your own home - you'd get to resent her so much and it would be hellish for your family too. I love my parents very much and they have been wonderful to me all my life but even so I'd struggle to care for them in my own home TBH.

Thank you everyone for all your advice and sharing your stories.

I wanted to update. I saw her on Saturday for the first time in 6 weeks (last time she'd recently had a minor stroke but we didn't know about the cancer and she seemed fine) she looks incredibly ill. Her arms are black with bruises, and it's scary how skinny she is, all in just six weeks.

I felt like a fraud last week as she told me the chemotherapist had revised her diagnosis and she had maybe 5 - 20 years. I didn't post as suddenly it didn't seem as, I don't know, desperate? However this isn't the case. She is terribly confused, to the point she's doing insane things and forgetting. A week ago there was an incident involving social services, the police and out of hours GPs... until she was hospitalised.

The hospital can't determine whether her confused state is due to the cancer, the shock of the cancer, or something else, perhaps an underlying condition. They also say they can't start chemo (due to start last week) until she's mentally stable enough to understand everything. The doctor told me he doesn't think she's going to reach that point. He said she has a few months left without chemo, maybe months to a year with it.

I'm still a little in shock, in all honesty.