I'm so glad your getting the help you needed. Like you say, its only a shame that it couldn't have happened sooner.
I read your bit about you not being sure if your mum will understand what your saying to her. I posted to you on the MacMillan website, but haven't seen a recent posting on there from you. I was in exactly the same situation with my mum back in October and she too had a spread to the brain. My mother became more and more unable to make clear coherant sentances over the months preceeding her passing. However, I did know that she understood everything I said, and in her mind, she had responded correctly. Unfortunately, the words she had chosen to respond with weren't always understandable. What I did notice is that she was responding to me with a word linked to something that she was looking at or thinking about at the time.
I guess what I'm trying to say is that, I really do think that your mum will understand you. I tried so hard with my mum to make sure I didn't speak to her in any other way that I would have normally done. Maybe that would work for you? I know its hard trying to second guess what they mean, but it might be the only way.
Our Mothers and family are so important to us and I'm so pleased you have been able to keep your mother at home with you. I'm sure she is very proud of you for doing that. I hope you continue to find the strength to look after her, along with your helpers. Make the most of the time you have.
I'm sure we'll all be thinking of you.
Just read your post and finished wiping my tears, and I wanted to tell you that I think you are so brave and strong.
I lost my nana 8 years ago this week to lung cancer (my mum was diognosed and traeted for breast cancer this year), and like your self we had difficulties with obtaining extra care and help for my nan, the help finally did come in the last couple of weeks,
I unfortunately can not give you any advice except for keep strong! and remember the good days you have spent together, you sound like a fantastic son and must have plenty of fantastic memories just like I do of my nan.
My thoughts are with you and your family at this difficult time.
I was so touched to read about you and your mum she must be a very lovely lady to have brought up such a wonderful young man. I was diagnosed last year at the age of 50 and my two children have been so good to me it makes you realise the importance of a loving family and you certainly have that. I will remember you, your mum and your family in my prayers.
Take care of yourself
For Jonathan Hi Jonathan,
We have been following your posts and just wish to say that should you feel you need some more support please do phone the Breast Cancer Care helpline, the hosts on the helpline are trained to support relatives and friends as well as people diagnosed with breast cancer. The telephone number is 0808 800 6000 and is open Monday to Friday 9am - 5pm, Saturdays 9am - 2pm
thankyou to everyone who's responded Hi there,
Id just like to say a big thankyou to those who have responded to my post, its strange, but coming on here i feel part of a small family of people who are all in the un-enviable postion of having to deal with a dreadful disease. It does however make me not feel so alone, i look at freinds and their normal lives at the moment and i feel jealous, why should i lose my mum? she has done nothing wrong... its a question im sure many of you reading this will also ponder over on many occasions.
Anyway as many of you have said, and made me PROMISE! Especially missfishy! We did get in touch with our macmillan nurse (thank god the xmas hol period is over), and we re-scheduled her appointment from thurs to wed 3rd. Upon arriving she was clearly shocked at how rapidly my mum had deteriorated, and within minutes had made a few calls to marie curie nurses and palliative district care nurses. SInce midday today we must have had 8 carers round, and a marie curie nurse is staying in tonight to give us all a slightly better sleep i hope. Mum has been fitted with a cathater, cleaned and washed properly, and generally cared for in a way which she needed a couple of weeks ago. As result she has perked up a bit, responding to voice, which she had not done for a couple of days.
My question is why when my dad asked for extra care was it not given? a few nurses coming round over new year and 'making notes' is not good enough, only when our macmillan nurse clicked her fingers today was anything done!!!
NOT GOOD ENOUGH...... She has bedsores and was constipated, and incontinent, we tried to deal with her as a family as best we could but we do not have the experience or the resources to do so properly, these matters should have been dealt with by people 'in the know'.
However i shall not whinge anymore as she is getting cared for now, but im sure you can understand my frustrations.
We have had it comfirmed that it is likely she only has days.... which we were shocked by, as the doctor yesterday said weeks?? i guess its hard to tell thou. Today was the first time in my life that i have ever since my dad properly cry his eyes out, and that was a very strange feeling.... i guess there'l be plenty more of that over the coming weeks.
I have signed off from work now, till whenever, they are understanding which is good, if they weren't then i would of told em to stick there job, family comes first right. Im not sure if my mum really knows who i am, she picks random words when you speak to her.... but with the research showing that hearing is the last to go we will keep talking to her and hopefully amoungst the stupid brain tumors she can somehow figure out the important bits of how much we care and will miss her.
Now comes the next few horrid days, days of numbness, shock, disbelief, anger, frustration and deep sadness, as sufferers or as friends/family of sufferers this is the part that is dreaded, and put to the very back of our minds... only family strength, friends, and bravery to get through it will help.... my mum has been very brave fighting her battle, so we will be brave in ensuring we pull together, and give her a dignified sending off that she fully deserves.
Thank you once again to all who responded, it is of great comfort to know that people out there who dont even know me care enough to spend their time carefully thinking through and writing replies. If anyone needs advice from me about a situation they are going through, or about to go through then i will be only to happy to help.
Dear mums got just days to live? Hello Jon,
I am at the beginning stages of having my Mum diagnoised with BC, so cannot help you. But just wanted to add my support, what you are going through is terrible and my thoughts are with you and your family.
I am so sorry about your mum, it is so hard watching someone you love in so much distress, and there is nothing you can do.
My beloved gran passed away just before Christmas from secondary bowel cancer. My mum (who has had breast cancer herself) was her primary carer, but had marie curie nurses coming in at night (2-3 x per week) to watch her so mum could get some rest. We also had the district nurses coming in regularly to give her her medication, as mum was unable to get her to take her pills. The district nurses and marie curie nurses were fantastic and able to keep my gran very comfortable. Mum also had 2 carers coming in morning and evening to help wash and keep her clean and dry.
With my gran, she was still eating regularly, right up until she passed away, and even though the GP had come out and said he thought it would be a matter of a few days, because she was still eating we didn't really believe him. My gran passed away peacefully 3 days later, having eaten her porridge in the morning as usual, she just drifted away peacefully in her sleep. She was on a syringe driver for pain relief, which did keep her quite sedated, although she had lucid moments, and was eating and drinking periodically. We found that one day she might not wake up at all, not eat or drink, but the next day she might be very with it, eating and drinking as normal.
The district nurses at the surgery should be able to refer marie curie nurses to your mum for additional support if the macmillan nurse is not coming as frequently. they should be able to help with that also. You could also ask the gp to come out and review your mum, and he/she will sort any extra medication or supplements that might help.
My heart goes out to you, and please let me know if I can help with anything.
Hi Jon It is New Year's Eve, which we have spent with some loving friends for dinner at their apartment in an old Fort where we live.....but my feelings at this time go back to when my twin brother died of brain cancer at age 50.
It was so traumatic to see a young, fit guy with everything to live for, just disappear before my eyes. I went to look after him about 2 weeks before he died, and it was almost surreal. He wouldn't eat nor drink and just laid in bed semi-comatose. It was a hot August day and I went to the local shop and got him an ice cream, which I just squished up and fed him like a baby. I just wanted to get some kind of nourishment into him. He hardly knew me - was delirious and thought I was in the opposite side of the room - that was a bundle of clothes his lazy, non comitted second wife left on a chair.
My heart almost broke . He was comfortable with morphine, and the local GP was just brilliant - even carried my brother up to bed in his arms.
It is some 10 years since my twin died, and I have breast cancer, Dad died at 59 yrs with colon cancer, so don't think my genes are that great.
All I can really do to help you through this very difficult time, is to say that time really does heal - I know it is a cliche, but true. I now look back on that time and know I did everything possible to make my brother's life as comfortable as it could be. As you are doing.
Please get your GP involved - we didn't get any help from McMillan Nurses but the GP was great and came in every day to sort out the medication.
You sound a wonderful son - rest on your laurels, and if you Mum has to go, make it as peacefull as possible for her.
hello Jon I think you might recognise me as Miss Fishy as you have replied a couple of times to my posts. My real name is Debbie and I am 34, fit and strong just like you and cared for my Mum at home as much as I could up to a point.
I do not understand why you do not have a district nurse who visits daily and a palliative care team that come in at least once a day to help wash/clean your Mother. It seems you have been abandoned which is appalling. Please contact your GP at once and explain that you are entitled to palliative care at home. Our team were fantastic, a special bed was ordered for Mum which ensured she didnt suffer bedsores, a catheter had to be fitted as she could no longer leave her bed but we tried so hard to leave her with as much dignity as possible.
I felt exactly the same as you about losing my Mum sometime ago. Although she passed away on the 18th December I really feel I lost her about a month before when she became very unresponsive, demanding and behaved like a child. I loved her so much that I would have done anything to help but there was nothing more I could have done. Jon, let me tell you that all that you are doing for your Mum now will help you in the future as you will have no regrets. It sounds like you are an amazing son and I wish I could come and see and help with your situation as my Mum was in such a similar situation with liver, bone and brain mets. It was the brain mets that were the most upsetting and she would call constantly for her Mum and that she wanted to go home. I pray and pray that she has now found her way home and is with her Mum.
Now, you promise me you get in touch with PALS and take your complaints about the service you have received and they will help to resolve it. Jon, your Mum deserves the very best treatment and is entitled to this. God i just wish I could come and see her and make it all better for you.
With Oramorph you can give 5ml every 4 hours, by syringe if your Mum has stopped drinking. This will at least ensure she is not in pain. You could ask your GP for a syringe driver to be installed which gives continual doses of a 24 hour period so takes the pressure off you. GET YOUR GP OUT JON, PROMISE ME!
Your love for your Mum will help you cope with the final weeks.Have you contacted your local hospice to see if there is a bed for her there. I wanted to keep Mum at home for as long as possible but when she stopped drinking and went in to a non-responsive sleep we felt the hospice was the best place for her. She spent just 3 days there and the staff were so wonderful. Me, my sister and Dad took it in turns to spend time with her and noe night when we were all there we just happened to leave the room to get a tea. It was then she chose to pass. As if she wanted to spare us or as if it was a very private journey for her.If you want to talk more to me then please email back and I will give you my hotmail address and telephone number. It might be good for me to talk too.
Big hugs and I know you will cope and get through all this, I am not pretending its easy, I am struggling a lot with Mums death and miss her terribly but I want to continue my life to make her proud.
For Jonathan Hi Jonathan,
I am so sorry your mum is so ill and you feel you cannot get the help and support you need at this time.
Can I suggest that you phone NHS Direct who may be able to give you the help and advice you need to get you over the holiday period. The web link is as follows:
The telephone number for NHS Direct is: 0845 4647 open 24 hours each day including the Bank Holiday.
The BCC Help Line will be back running as normal from Tuesday 2nd January on 0808 800 6000 Monday - Friday 9am - 5pm, Saturdays 9am - 2pm if you think someone here could help you.
Dear mums got just days to live? Hi there.....
Tommorrow is new years eve, and ironically my dear mum's birthday, she will be only 53...
Im not sure if anyone on here remembers me because ive not posted for a while, i guess ive been in denial, id seen my mum go through breast cancer, be successfully treated, and then be healthy and fun-loving again for a year at least.
However i now know that she will not pull through the secondaries in lungs and brain this time. She is getting weaker by the day, talking gibberish, not wanting to eat food, and hardly drinking, she can no longer get out of bed, and has headaches and chronic coughing, which are only relieved by oramorph and methadon (2 of the strongest prescriptions drugs out there) she is so drugged up that i feel as though i lost my mum a couple of weeks back.
The Macmillan nurse has also annoyed me a fair bit, missing appointments, only coming for a short time and once every week or two, and at mums last appointment around Dec 10th, because the nurse thought she appeared fine, scheduled her next appointment for 4th jan, nearly a month later!! I feel aggrieved that my mum has detieriated so much over the last few weeks, and as a family we have had no proper advice on how much she should, eat, rest, drink, have painkillers etc...
Now i am worried that she may not make it to the 4th Jan, then what should we do about funeral arrangements, moving her and etc?? I cant get hold of anyone at Macmillan because its bloody christmas time, all answer phones and holidays, well while everyone else is having a lovely holiday, we are trying to care for a dying mum, and not entirely sure how to go about it.
I lay awake at night now, whilst listening to my mums cough, which tears me apart inside, i am a fit healthy, strong young man, yet i can do nothing to get rid of my mums pain. I would take a bullet for any of my family as i love them dearly, but all i can do is bottle up my anger and frustration, i must be strong for my sister and my dad. I'm trying to imagine life without my mum, i feel as if my life will never be the same again, although i have a loving dad and sister, we will no longer be a little family unit. Finally i am coming to terms with the fact i 'will' lose mum, but no way am i ready.
How did any of you out there cope with the final days or weeks? Did anything work or not work? Did you know when the time was close (as in final hours) MY GREATEST FEAR is that i will be out or not around when the time comes, i'll have popped out, or be sleeping, my dad also sleeps in the spare room so mum can be more comfortable, will we know before she goes off to sleep, are there any clear signs?? or is it a distinct possibility that she will die in her sleep??
I thank my mum for her part in bringing me up as a well rounded young man, and will miss her dearly when she goes... those of you out there that are in similar situations i feel your pain... be strong and take care.