Hi, everyone my name is Caroline I’m from Nottingham and this past week my world has been turned upside down, my mum has been diagnosed with a terminal brain tumour, at the minute she is ok, still remembers everything her body doesn’t want to work anymore so I’ve becom the carer for my mum and dad, cooking, cleaning shopping etc… which I don’t mind doing at all, but in private I’m broken crying constantly not knowing how long my mum’s got, I work full time and have tried to keep quiet about it but i broke down on Wednesday so management know it all now, they tell me to go home and be with my family but I need to work to keep my sanity, I know as mum gets worse I’m going to have to take time off but for the time being I need to work ( is this selfish?) Today I fetched prescriptions and there’s a lot of new medications a lot of meds to inject one for sickness one for secretions??? One for pain (morphine) does this mean she’s going to go downhill quickly? I can’t talk to anyone because I end up a blubbering mess, I know she’s got approximately 6 mths to live, god writing that is so hard, but the thought of her and my dad going through this is killing me, anybody that knows me thinks I’m strong and can cope with anything, before this I could but now I feel like I’m in limbo like I’m locked in a room with a bomb not knowing when it’s going to explode, I feel so alone. I live with my 23 yr old daughter and 27 yr old son so I cant talk to them about how I’m feeling.
Hi Caroline and welcome.
Keep talking it will certainly help.
Don’t be alarmed by my above link. I give it to you just so there is someone to talk too.
People tend to always think it the last straw. The Samaritans are just great.
I guess it maybe difficult to have a phone conversation. Because of having children nearby.
You have taken the first steps on sharing on this forum. You have opened a gate and let us help you through.
Thankyou for replying, I have the number for Samaritans in my phone ready to use if and when I’m able. It’s just so hard to talk to anybody about how I’m feeling, my brother lives with my mum and dad he’s 47 and always been the baby so he’s expects me to do things for him too, he’s classed as disabled he has a few things wrong but he can walk, drive his car and be independent he’s not dying like my mum is but expects me to do things for him too and if I refuse he moans to my parents so to save the peace I do as I’m asked to a certain extent, so obviously I cant talk to him because he still thinks he comes 1st, my sister lives about 20 miles away so she comes up a couple of times a week but I’m usually working then so don’t get to see her or talk but not sure what I could say to her anyway, again she thinks I’m the one who holds everything together although she’s older than me. I’m just so tired of crying and then having to put on a brave face in front of my family, I’m a coward really because I don’t want to know the facts of what’s going to happen to mum in the end I’m already broken so knowing that would tip me over the edge. My sister has already experienced something similar with her mother in-law so she knows what to expect, but my mind is going into overdrive thinking of how it’s going to be at the end of my mum’s life and I’m not coping at all, so speaking to someone either face to face or on the phone would be a waste of time because I’ve turned into a mardy cow that can’t talk about it without crying my eyes out and ends up gasping for breath from crying do hard, but through this forum I at least am able to write about my feeling and frustrations, I’ve also started a diary so when I come home from my parents house I write it all down the good and the bad, at the minute it’s mainly good my mum remembers things my kids did when they were young that I had forgotten about, and these days are so precious to me because I know in the very near future she’s going to most probably forgot most things if not all things and it’s the unknown that scares me and I feel so selfish because mum is still here with us, still sound of mind but all I see is an uncertain future although certain that the future with her will be very short.
Hi Caroline,
Welcome to the forum. Sadly lots of us have supported family with a terminal diagnosis. It’s really tough, but we can help.
Wearing my “Practical Hat” here are a few things to consider. The very first thing is to buy a notebook, diary, or start a new computer file. Write down details of everyone you speak to, name, address, phone number, what was said and agreed. Your memory will become unreliable!!
I am dismayed that you appear to have been given a prescription and left to get on with it?! That’s a disgrace, what on earth were the doctors thinking of! One of my relatives had cancer and lived longer than expected, the other was told he had 12 months, but lasted only three.
I’ve been involved in too many family deaths, and have learned some things the hard way.
I would strongly recommend that you and dad discuss which funeral director you will use when the time comes, as soon as possible. This sounds heartless, but it’s far easier than doing it with no notice whatsoever, believe me.
Take a week off work, to give you time to think and arrange a few things. Come back here whenever you want.
Your mum should be entitled to NHS Continuing Healthcare FAST TRACK.
Insist that mum’s GP makes an immediate application.
Ask Social Services for an urgent Needs Assessment for mum, and Carers Assessment for you. They are supposed to give enough care so that those who wish to continue working, are able to do so.
Contact your local hospice, if you have one.
Make a FAST TRACK application for Personal Independence Payment or Disability Living Allowance if she is under 65, or Attendance Allowance if over 65? Mum does not need to know, in her circumstances.
Do NOT promise mum she can die at home, just say “as long as possible”.
DAD
Is dad fit and well, or will he need carers when mum has died?
HOW WILL I KNOW WHEN THE END IS NEAR?
Google “Signs of Dying” as soon as you can, I know just typing the words will make you cry, sorry. However, you will find invaluable information explaining how the body gradually shuts down over a prolonged period, maybe weeks, maybe months, maybe even years. It explains how you will be aware of a decline, but the patient will not. It explains why the amount eaten and drunk goes down, because the body automatically knows how much it’s declining organs can cope with.
All your experiencing right now is totally normal.
I am so sorry this is happening to you. Starting to grieve for the loss of your Mum at the same time as having to look after her is so hard. (I know I cried for weeks when my dearly-loved husband was told about his brain tumour.) Even so, please ask for help for yourself while you are supporting the others (GP, Samaritans or hospice). If you know you won’t be able to speak in person perhaps write it down and email or hand a note to your GP’s reception desk to ask for an appointment.
Of course you don’t have to look for more information than you want, but there is a brain tumour charity which has support information on its website and I’ll just give the link here in case you want help from them at any point Get Support | The Brain Tumour Charity.
About those prescriptions - do you know if your Mum has a specialist cancer nurse? I could always ask my husband’s nurse to explain anything and if she didn’t know, she’d find out for me. She also had an email address so I didn’t always have to talk on the 'phone.
I hope you’ll find it helps to keep posting here.
Hi Caroline,
what a terrible shock for you.
Concentrate on the now; if learning what will happen to your Mum further down the line upsets you too much - then you aren’t ready to learn it yet. That is why doctors give patients just basic information and wait for them to ask questions, before telling them more.
Get in touch with the local hospice - they are experts at skilfully and sensitively guiding patients and families on their final journey. They will be able to support the whole family practically and emotionally.
I understand your need to work, but it is good your employers know and understand the situation. It might be good to take a week off now or in the near future to get everything sorted.
As for your brother, unless you want to be doing everything for him in the future, he is going to gradually have to start doing things for himself. Start treating him like a teenager and bit by bit start teaching him to do things for himself.
Melly1