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END OF LIFE. SCLC

Monicaschild
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Anyone experienced loosing a loved one with SCLC brain mets.

Mum's feet are like ice. Breathing 26 per minute. 

No pain. At home, 24hrs a day in hospital provided bed. Some agitation in early evenings.

Mum's area around mouth goes a grey shade. 

Her urine has become dark and reduced in output.

SHE still eats a little. But since steroids stopped on Tuesday doesn't drink as much. 

Any ideas what stage she maybe at? Any thoughts wekcome. 

This sounds abrupt but I don't want sympathy just some facts. If anyone can help. 

Thank you

  • Offline in reply to Monicaschild
    Hello again Bex and no you are not a winger. It is just an awful time for all concerned Carers Allowance is not paid to your mum, it is paid to you as long as you spend at least think it's 35 hours a week looking after her. Not sure what age your mum is? If she is already pension age then it is attendance allowance which she has to apply for. Whether you decide to go and spend some time at home is a decision only you can make for yourself. Maybe a short time away would be beneficial. Nobody can give any definite time frame, things could change very rapidly or progression can just linger. As Jolamine has said, her mum ate at lunch time and then passed away at 4pm. After weeks of us looking after my mum at home, she spent her last 3 days in hospital and she died while we were home, and yes it was sad to think that she died on her own but it happened suddenly at the end. Am sure you don't need to feel guilty if you are not there and the worst was to happen while you were away. Whatever you decide, I hope that you find some peace one way or another. Kind regards. Lynne.x o
  • Offline in reply to littleone58

    Thank you Lynne

    Mum seems to be now getting headache. From brain mets. She is still sleeping 95% of the time. 

    Just feel so bloody useless. Xx

  • Offline in reply to Monicaschild

    Hi Bex,

    Please don't beat yourself up, I know things are incredibly difficult right now but your Mum would not want you worrying. You do what you need to.

    I know it's probably awful advice as my Mum passed away today from cancer so I'm not sure if I'm in the best position to be handing it out. 

    My Mum was ready to go, I could see it in her face the last time I spoke to her. I felt peace in this, she lost her quality of life so although it really hurts, I feel some relief. I'm sitting here now talking with my family about the good times and that's how we'll remember her.

    I'm rambling, but please if you want to talk please shout. You're not alone x

  • Offline in reply to Mhemming

     

    Hi Mhemming,

    I am so sorry to hear that your mum passed away today and I send my sincere sympathy.

    I lost my own mum to cancer too. She had a twelve year battle with breast cancer and developed metastases in her brain, bones, liver and lungs in her final year.  She went downhill very quickly at the end and it was heartbreaking to watch.

    I understand your relief as well as your grief, but am glad to hear that you can still talk to your family about the good times and remember her in happier days.

    Thinking of you and, always here for you.

    Kind regards,

    Jolamine xx

     

  • Offline in reply to Monicaschild

    Hello again Monicaschild.   I have been away for a few days hence my lack of communication. 

    You are going through the most awful time but are coping very well; honest.  There is not much you can do beyond making sure your mum is comfortable, talking to her - although she cannot respond - and thus providing a loving presence.  She knows you are there.   If you need a break then you should take one as long as somebody else is there.  Annie

     

  • Offline in reply to Annieliz

    Hi Annie

    Thanks for response. 

    Mum this morning not able to eat her breakfast or drink. Without coughing. 

    Her breathes are down to 22 p/m. Temp.is 36.6

    Have called gp out and McMillan. Awaiting there call back. 

    Her face is looking different again. With facial droop. All down to the brain mets. 

    Thank you for your friendship on here xx

     

  • Offline in reply to Monicaschild

    Hello again.  It does sound as though your mum may be beginning to fail.  I say "may" because I could of course be wrong (not medically trained) but I hope for all your sakes, most of all your mum,. that she will soon have the peace she craves.

    I have attached some information from the government website about Carers Allowance and think you ought to contact the Benefits Agency without delay.  I know this is a lot to do when you are in such a distressing situation so do ask MacMillan for help with this - I have read many people on their website stating how they helped them through claiming the benefits.

    Sorry your stepfather is making things a bit difficult - he cannot help himself but it all seems to land on your shoulders.

    (Also, hello to everyone who is posting here.  We all have had different life experiences so can put our individual points of view which is great - I see we are all agreed that Monicaschild is doing a great job in very difficult circumstances but she is only human and needs help to get her where she needs to be.  Hopefully the benefits issue will get resolved with the help of MacMillan.)

    www.gov.uk/.../eligibility

    Annie

     

     

     

     

  • Offline in reply to Annieliz

     

    Hi Annie and Bex,

    I totally agree with you Annie that Bex is doing a sterling job . It is never easy to care for a loved one in the end stages. There may seem to be so little that you can do, but what you do makes all the difference to your mum. Remember that hearing is one of the last senses to go, so keep talking to her.

    If she is not drinking today, try to moisten her lips with moist cotton wool. The doctor can prescrible lemon flavoured cotton buds (not sure what they're called), and they do help to freshen your mum's mouth. I am glad to hear that you have already left messages for the Macmillan nurse and her GP and hope that they get back to you soon.

    As far as benefits are concerned, does your mum's hospital not have an information department?  Ours is run by Macmillan and they are happy to fill in forms for us, which is a great help.

    I wish that we could do more for you Bex, but we are certainly here to support you at this difficult time.

    Don't lose hope, you are doing as well as anybody can, given the situation you're in.

    Kind regards,

    Jolamine xx

  • Offline in reply to Monicaschild

    good god what you and your mum are going through has brought me to tears ..nobody should have to see that and go through that ...

    do not feel guilty xx 

     

    im so sorry 

  • Offline
    Hi monicaschild I have been visiting this website for quite some time now, only reading people's experiences with cancer and never actually posting anything. This is my first post on here. I must thank you for sharing your experience here. You have no idea how much your posts have helped me. My sister's condition these days is pretty much like your mum's. Sis, now 33, was diagnosed with stage 3 breast cancer in 2013 and it very quickly metastasized to her brain. Docs have used all the treatment options and now their main focus is the management of pain. She started having seizures just recently and 2 weeks ago fell at home because of a seizure attack. Called the ambulance and she has been hospitalized ever since (writing this post from a hospital while she's asleep). She's still being given steroids and pain is being managed pretty well with paracetamol and morphine. Her heart rate being monitored throughout the day. The thing I am most worried about now is her agitation. Ever since that fall of 2 weeks ago, she has changed A LOT. Right after the fall she became unresponsive. Then she began responding but what she would say made no sense at all and she would not understand what we'd talk to her about. Then it changed to anger. She'd try to get out of bed and seemed angry and all (read about it on the internet...delirium??). Now she's changed so much that she doesn't at all seem like the sister I used to know. Her speech and understanding has deteriorated so much that she can't even tell us whether or not she's in pain. For 2 days now, her agitation has worsened to such a degree that when she's awake all she does it scream. Then she's given morphine to calm her down and she sleeps. Wakes up again, begins screaming, given morphine again and this goes on. Talked to the docs about it of course and they said they could prescribe "halodol" but some family members are against it so it hasn't yet been used on her. I have read a lot about it on the internet and according to it it's delirium and should be expected in a dying patient. Sis is on soft diet, no problem swallowing food and drinks, but is bed-bound for the 3rd week now. It is truly painful to see her so restless and frustrated when she's awake. And when she's given morphine there's this feeling of guilt about putting her to sleep without her will. She seems to be in distress. Could you please share your experience on agitation? Did your mum experience the type of agitation my sis is experiencing right now?

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