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hello I am new to this forum and if anyone can give me some advice i would be so grateful. It is so difficult to know where to start as things seem to change so quickly. My mum was diagnosed with PC in may 2011 we were advised that surgery not an option due to the location of the tumour. Mum had a stent fitted which after a few weeks cured the problem of jaundice. We were told at the time that mum would not see christmas so my mum decided not to opt for chemo and would enjoy the time she had left. She did so well for the first 3 months and just took paracetamol to manage the pain and discomfort. She then started to detriorate losing an awful amount of weight and she suffered from insomnia intense fatigue and depression. The last time she left the house was october she eats only very small amounts of food and does not drink enough. She has a vey high tolerance of pain and the gp is amazed at how she has coped with the pain since diagnosis. However things have changed dramatically over the last 2 weeks she is now on mst tabs and oromorph when required she has also developed ascities and although she has been on water tabs for 10 days now this has not improved or made her pass more urine. She seems unable to regulate her body temp and has periods of being either to hot or to cold and she wears gloves in bed. she is a very proud and independant lady as has refused any form of care and up and up until last week she ould only allow the gp and district nurse to call once per fornight. The situation seems to be changing rapidly now she is very confused not eating much and has now devleoped puritis which I understand is due to her liver not functioning we have had this happen before as mum was also diagnosed with pbc 16 years ago. I know I have gone on a bit too much but I am at a loss to get a general idea of what is going on and what to expect both my brother and I live a long way from her me in the southwest and my brother in scotland and mum in cumbria. We as her children have told her we will come and look after her but she has refused so as you can imagine I feel helpless. So if anyone can give me some advice pls reply. Thank you so much

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Hi Mandylou

I am sorry to hear about your mum.

First things first. Have you got contact with her doctor? Has he suggested having her acities drained? My mum developed acities, and had to be drained a few times (5 I think), one of the times it was very urgent, as the fluid was restricting her bladder and stopped her peeing.

I take it that your mum is living on her own? Does she have any other family or friends that could possibly pop in - not making it too obvious that they are checking on her. What about her local hospice - where I am it is the EllenorLions hospice, but elsewhere you have MacMillan nurses. They can not only offer care, in the home, or hospice, whichever she prefers, but also can put in place items to help your mum. I.e. bath chairs, comodes, walking frames, even hospital beds. Also check out whether you mum would be eligible for continuing in care funding. which basically means, that she can be looked after either at home or hospice/hospital and you don't have to pay for it. A real peace of mind. We were fortunate that my mum managed to get it - but I found out if you don't ask - you don't get. It went on the criteria that mum could not physically look after herself anymore (my dad was her carer, but he had major problems with his heart), so we managed to get funding.

Whatabout the hospital, has she not seen her consultant? I don't know anything about the liver bit, but I would think that they would need to see her about the acities.

Ahh parents, what are they like heh? My mum was very independent and stubborn to the point that she wouldn't take pain killers, when it was fairly obvious she was in pain. I remember my mum being so cold most of the time, the heating would be ranked up to near boiling point, and she was still cold.

I feel for you hun, I really do, I was lucky that I am a few miles down the road. Can you take control from your end - I know logistically its very difficult, but maybe if you can get in the loop and control some of what is happening. I know mum didn't want carers in, but in the end it was a necessity, and as much as I loved her, we had to overrule her decisions.

I hope that you get some much needed help and information.

Take care - my prayers are with you.

louie xxx

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Hi Louie thanks for replying. So bizarre my midle name is louise and my mum has always called me louie! ?

I am lucky to be able to speak to the district nurse team who now visit mum everyday. We did have the mac nurses visit daily when she wa first diagnosed in may but upon her insitance this was stopped. My brother had a meeting last week with mum, GP, district nurse and social care team worker it was agreed that 'equipment' could be bought in to help mum and now would be the time to allow trained carers to attend to her twice a day. But mum being mum let them all decide for her what they thougt should be done and 1 hour after everyone left she got on te phone and cancelled it all. I have been up and down via a 7 hr train journey every few weeks but now when i feel she is not coping and her health is I feel compromised she has decided she does not want any fuss and in her mind would be quite happy if everyone just left her alone. Also she has clearly stated in writing that no medical procedure or intervention is to be carried out. I just feel so helpless she already had PBC which is a terminal liver disease and now that the ascities has not reduced she is now so confusec and itching constantly which i know is a sympton of liver problems. As for seeing a consultant when this was initally diagnosed in the hospital mum was on the liver ward as she presented with severe jaundice, frm the day of diag mum stated that she did and would not see an oncologist, therefore I have no way of knowing if this has spread to her already severly damaged liver, which I believe it may have. My mum is a very strong woman but I just wonder if this is just a battle she is losing fast know. She stays in bed all day eats barely nothing doesnt want to talk to anyone even old friends. The pain is increasing and her rapid level of confustion worries me. She is on :10 mg mst tabs and oromorph when required.

Anyway sorry am sure none of this makes any sense at all but thanks for listening xxx

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Hi yeh Louisa is my middle name :).

Anyway, oh dear, what a nightmare. It is so difficult, I remember very clearly with my mum, she was determined that she wasn't going to be a burden, and that she wanted control of her illness. Which is a good thing, until she got to the point where she was unable to look after herself. We had to take control of her meds, as she was self medicating way too much of certain meds (6 codiene in one go) and not enough of others etc (oramorph). I remember quite distinctly the confusion taking over, it was such a sad time, as she was a very articulate, strong, independent lady, and this particular day it took her 20 mins to say she wanted mash for tea.

Is your mum still able to get around, i.e. to the loo etc? Mum's ascites got so bad in the end that she found it difficult to walk.

It may be the case, if your mum is being so stubborn that maybe you have to do a power of attorney over her and any decisions are either yours or your brothers?

I remember we had to do the DNR form, such a sad day - luckily mum never knew about that, my Dad couldn't make the decision, and I had to, one of the hardest things I've ever had to do.

Talk soon.

louie xx

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  • 1 month later...

Hi Louie

I thought I would update you and let you know about the rollercoaster we have been on since the last time I was here. Mum went into her local hospital 2 weeks ago for the ascities, we were told that she would not really benefit from having it drained as the disease had progressed rapidly, mum discharged herself the following week. I went to look after her 2 weeks ago, well last tuesady she went on the LCP and a catheter fitted, she was doing ok but by friday she was very agitated and fought with all of us, and on monday this week she died. All this seemed to have happened so quickly and I feel so lost and empty. This is truely such an awful desease.

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Hi Mandylou, im so sorry to read about your Mums passing. It truly is an awful illness and hard to watch our loved ones suffer. My prayers and thoughts are with you. Rachel xx

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Hi Mandylou,

So sorry to hear about your mum.

Even though we know how ill they are, it's still such a shock when it happens so quickly and suddenly.

Thinking of you.

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Hi mandylou

I'm so sorry to hear of your loss. My deepest sympathys at this terrible time.

When you feel ready there will always be someone on here to chat to.

Take care and much love x

Louie x

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PCUK Nurse Jeni

Hi Mandylou,

So very sorry to hear that your mum passed away.

Please accept our condolences as a charity.

Kind regards,


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