Come on Eileen (My Mam) Died 11.08.12

[NICOLA]

Hi Everyone and Hi Francis, we have had good days and bad days with my mam, she's mostly in bed now and very weak, she was put on a tablet form of morphine yesterday as the oromorph wasnt doing its job, she's also had her steriods upped to 4per day. I still cant believe this is happening to my mam, sometimes i'll be busy doing somthing and i'll forget then it hits me.
If only she could put some weight on, she's eating ok but just keeps loosing weight, she has lost 3 stone and is now down to 7.5st, she showed me the other day her legs and bottom and it broke my heart how thin she is. I think thats why she is so weak because of the weight loss. People keep asking how Im doing and I tell them I cant belive Ive hardly cried I feel strangley calm about it all, I think Im the type of person who always looks on the bright side and after reading some of the stories on here and how quickly people have lost their loved ones, Im so greatful that we have got time with mam and time to prepare. I just pray to god its a peaceful ending and she has no pain. Thanks for listening. Nicola

[Ella50]

Hi Nicola,

Just like to say my heart goes out to you hun..
Surreal isnt it!?
It must bring comfort to your mother knowing your there for her and doing your best..
Its great to hear that your mam is still eating.. maybe with the extra steroids they will help with her appetite?! I thought steroids done nothing for my mam.. didnt know about the side effects at the time- They did cause thrush in my mams mouth, so made it sore to eat.. I learned that side effect from Jeni on here.. just felt like we kept hitting a brick wall as taking one thing affects another and then another... Keep enquiring..
As with the morphine tablets, I hope you do see a big improvement when her pain is managed better.

My mam had good and bad days also, it seems to be part of the illness and I found things changed so quickly- not sure if you read my post.

Take comfort in, as you said, that we are given the chance to talk and prepare which is priceless- as not many people get that opportunity.
Its great your so positive, your doing so well. Just embrace everything about her and I really do hope you have many good days to come..
The quickness of it all with my mam still amazes me.. but remember everyone walks this journey at different paces..

Still cant beleve my mams funeral was already a week ago today.

Look after yourself.. Keep posting and keep strong.. Love Ella xx

[NICOLA]

Mam's took another turn for the worst over the last few days, she's developed serious thrush in her mouth and has a chest infection she's so ill she can hardly talk. She's been given a mouth gel and a stronger course of anti biotics, the doctor came out today and said it wont be long now, perhaps weeks. Hope the anti biotics work, lots of tears and prayers tonight xxxx

[laura]

hello nicola, so sorry to read your post, your going to need all your reserves to cope with the future aren't you? lets hope that your dear mam is kept comfortable and pain free, and i hope you get plenty of support, sending you my good wishes and lots of strength, love laura xx

[PCUK Nurse Jeni]

Hi Nicola,

Very sorry to hear about your mum.
I hope that the medication works and that the thrush clears up in her mouth, as this can be very uncomfortable.

Hopefully, her pain relief is being closely monitored to make sure it is effective.

Kind regards,

Jeni.

[ali40]

Hi Nicola

My thoughts are with you its amazing the strength you find when you need it, if someone had told me what was coming in the last year I wouldn't have believed it.

You will be fine enjoy any of the little bits of good times and smiles you can. Sometimes just being there and your mum knowing you're there will be enough.

Alison. xx

[DRAD3]

Hi Nicola
So sorry to hear about your Mam. As Jeni said, I do hope that she is kept pain free and as comfortable as possible. It is truely awful to know that everything is so hopeless and the fear of the unknown can be the worst part. My fear of the end was much, much worse than my experience of it. Gary, with the help of the District Nurses, was made comfortable and he slipped away peacefully in his sleep. It is the cruellest thing to have to experience but even I am grateful and know that things could have been far worse. I do hope that your Mam and you get to share some precious and peaceful moments and I send my love and will be thinking of you.
Deb
x

[NICOLA]

Mum is sleeping 90% of the time now, the doc and Mac nurse have said only days left. She's so weak, not eating only drinking, she has had to have a camode in her room as she cant walk to the bathroom, her wee is almost orange, it is killing me to see her like this. We have had a steady stream of visitors, mums sisters and best friend come daily, district nurses come twice per day.

Ive slept next to mum for the last two nights just to help her with drinks, toilet and oramorph. But tonight ive had to come home as I have my family (2 little ones and husband) to be there for too.
The doctor said her liver is enlarged and she is starting to go a yellowy colour (does anyone have any ideas about this) just like she did prior to diagnosis.

Also the doctor wanted to put her onto morphine injections but I said no she isnt in any pain yet and oramorph is doing its job. I think once she goes onto the injections that will be it she will fall asleep forever...........there is also talk of hospice but I think she is too confused to make the choice, she keeps asking what day it is and weather its morning or night.

If anyone could tell me what it was like for their loved one at the end I would be greatful.

[louiepc]

Hi Nicola

It's awful what you are going through. My heart goes out to you. I can only talk from my own experience, and I would assume that everyone is different.

My mum's last 2 weeks were strange, one day we would think that she was going, then the next day she would manage a few steps to the commode and eat a small amount. She last ate on Christmas day, she had a terrible boxing day, so much so, that we asked the nurses to give her something stronger as the oromorph was not touching her pain, she was given a shot of Medazolam (I think), and her syringe driver was increased from 5% to 20%, she did not wake up after that, she slept for 3 days.

I remember her pee being very orange and very strong. I can't recall her being jaundice though. I think this is part and parcel of the end though, probably organs starting to shut down, I'm not sure.

If you are still able to communicate with mum, talk to her, even if she doesn't respond, hearing is the last sense that goes. Even when mum was asleep in her last few days I would sit and read to her.

I am so sorry that I cannot help anymore. Lots of love,

louie xxx

[Ella50]

Hi Nicola, I have never sent any private messages on here before, but if you're able to contact me Im sure i'll be able to help x

Hope your doing ok Louie

Take care all

xxx

[NICOLA]

Mam died today.........at 1pm. No one should have to die like that rolling around shouting for help, I knew she was very near the end all of the signs were there, we constantly asked her if she was in any pain, she always said just an ache which we managed with Oramorph until last night it seemed to get worse so quickly and the oramorph wasnt working. The district nurses came out this morning and saw her pain and quickly gave her a shot and fitted a seringe driver, they said she would soon settle. I waited but it only got worse and worse, she was bringing an awful black fluid up, loads of it (can someone tell me what this is) she was shouting for me to please help her.... she died in awful pain with me and my dad grasping her hands.
I wanted to share this awful situation to help others, please get your loved one onto strong morphine before its too late. When she stopped taking all of her meds the Doctor said its time to put her on Morphine injections, the district nurse said it, my mams best friend said it, but selfish me didnt want her to go into a deep sleep because she wasnt in any pain...if only I had listened she wouldnt have died in agony. Everyone is telling me I cant blame myself I didnt know what was coming but I feel I should have done more, more quickly. Please get your loved one onto the correct pain medication QUICKLY before its too late. To my brave brave mam RIP xxxxxx

[laura]

dear nicola, my sincerest condolances to you and your dad, youve been a stalwart to the family, your mam is at peace, now look after you, the coming days will bring more heartache, but no suffering for your mam,
thinking of you my dear, love laura xxxxxx

[farmers wife]

Dear Nicola, my heartfelt condolences to you, your Dad and your family. Your Mam was a brave and lovely lady.

No more pain for your Mam, may she rest in peace and love.

I continue to think of you, praying for your strength and courage to get you through the coming days.

Take good care of yourself and your Dad. Sent with much love, Karen xx

[Ella50]

Nicola, im so sorry to read about your mam
Take care of yourself,

love Ella xx

[francis]

Oh Nicola please don't torture yourself with "if onlys" If its any consolation to you I would have done exactly the same as for as long as I can remember my mother has made it know that she would not want to be out of it on morphine for the last couple of days of her life, and I'm sure her opinion hasn't changed. You did what was right at the time and no one could predict that they would not be able to get her pain under control. If they defiantly knew they would have been blunt with the truth and insisted. What all the specialist do know is that everyone is different and they just hope they get it right for that person. What your mam did know was that you and your dad were there every step of the way holding her hand.
It was such a shock to read that your mam was gone. I feel very frightened for myself and my mam. Please know that I am thinking of you xxx