Detoration is heartbreaking

Hi 

I have posted before about my mum, she was given weeks to live on the 3rd march. after only being diagnosed on the 20th February.  She is at home with my dad.   

She has been pretty much bed bound since coming home and always had oxygen tubes in.  The only time she leaves the bed is to use the commode which she takes about 30 mins to recover from each time.

 

I have seen a real detoration in the last week. Although she is swollen on the tummy, legs and arms she seems very withdrawn if that make sense. She seems very pale too. She keeps getting bouts of high temperatures. Feeling sick, constipation, dirahea. She has said she doesn't feel it come sometimes.

She now sleeps most of the day.  Maybe Alert for an hour or two a day.  She eats very little maybe a little toast or a yoghurt .

She sometimes seems confused and teary.

Although she has many end of life symptoms. 

I still don't know how close we are?

I don't want to lose my mum but I don't know how long she can go on as she is.  

I don't really know what Im posting for.  I just need to talk it out my system. 

How long did the end go on for u? 

I am so tired and drained and can not do anything but overthink. I am still working full time with 3 kids and visiting mum as much as I can to help my dad. But I feel like I'm not doing any of those things very well. 

 

Mum passed away this morning (7/04/2021) at 3.47 am.

The last 24 hours have been horrendous

 

 

 

 

  • I'm so sorry you are having to go through this. You are being so strong for your mum, it is heartbreaking to watch the deterioration. 

    My dad died from cancer 2 days ago. A very similar situation to your mum. He received his diagnosis on 11th Feb.

    When he died he stopped being able to swallow properly. He hadn't eaten for a week and could just manage sips of water. 2 days before he died he stopped being able to use the commode and had to be changed on his bed, although he was hardly going to sleep he toilet at all - no bowel motions, maybe one or 2 urination a day. We would just wet his lips with a sponge, he couldn't really swallow anymore. Based on that I'd guess your mum has a week maybe, and once she can't get up anymore or eat, it will be days after that. You could ask the Macmillan nurses for guidance though?
     

    it's agony to watch and it's really hard to know what they are taking in when you talk to them. Like you I have children, including a 6 week old baby. I would visit every other day, I needed some space to cope with it all - but there is no right or wrong, it's really hard to be there all the time and it will make you a wreck at home with your kids. Is your mum frightened? I got the feeling my dad was. I told him that he would be alright, not to be frightened, that I wasn't sure what would happen but I knew he'd be fine, that he'd had a great life and was an amazing dad. That was so hard to say, but he died the next day. He chose to go with no one there except my mum, so I think even if you go all the time your mum might choose to go when she wants to, maybe without her children there. 

    I really hope that helps. Don't forget that although this is a really hard time, the journey is going to carry on for you so you need to give yourself some breathing space, if you can. Sending you strength and support

  • Hi there ...

    Oh my , your getting pulled in every direction ... can you take a bit of time off work .. even a few days ... there's not many managers that would not understand what your going through right now ... be kind to yourself .. your not super woman ... just human ... if you keep doing this you will crack ... you need to breath...

    I know you want an answer to your question ... if only we had a cristle ball ... but in my lifetime and looking after those near the end of their journey... some live far longer then expected ... and some go far quicker ... there's no logic ... even those expierance can only give a rough estimation ... 

    I'd say she sounds like she's comming close but I'm only guessing from what you said ... have her medical team put in a driver for her meds ... that's usually one of the last things they can do to keep her pain to a minimum... talk to her carers ...ask what they think ... I'm so so sorry your going through this heartbraking time at the moment....it's one of the hardest things you'll ever do ..

    But hold on in there ... please ask for help for you .. you can talk to Marie Currie ... look on their website .. they are there for your mum's last journey and to chat to the family too ... they can listen and advise you ... sending you a vertual hug... Chrissie x 

  • Thank u so much for Ur response. I'm so sorry about Ur dad.  Thank u for sharing Ur experience. I know everyone has a different one.  

    I don't think my mum is scared, maybe a little in denial. She talks about the summer and when she feels stronger shel go in the garden.  I'm not sure if that is for her benefit of mine. But I just go with it.  

    How old was Ur dad if u don't mind me asking? 

    Sending u all the strength through this difficult time. X

  • Thank u so much for Ur reply. And kind words. 

    I think sometimes the unknown is far worse then the reality sometimes. Oh for a crystal ball. 

    The strange thing is there has been no one medical out to visit my mum since the day after she left hosp. So 3 weeks. I'm not sure if this is something they wanted as my dad is reluctant to chase it up and as said he will phone of he feels they are needed.  So no drivers have been given.  But her morphine has increased. 

    I know things can change quickly and every night I wait for a phone call. But I also know that there maybe many weeks of this to come too. It's so incredibly hard. X

  • She might be in denial or just thinking about something nice, you're absolutely doing the right thing by going along with it and taking her lead. Thanks for your kind words - dad was 72. I realise that makes me very lucky as some people lose their parents at a much younger age, and he had a great life, but he still had a lot more living to do - he was a very "well" 72 year old, and a rock in our family.

    I do think you should ask for some time off work, even ring your GP for a sick note. I was lucky in a sense that I'm on maternity leave, I couldn't even begin to imagine going through something like this and working, as well as being a mum. My sister took a week off work when dad was very ill, as she was snapping at people at work and feeling exhausted - you'll break if you don't look for the warning signs and take time off. 
     

    Hope you're ok. Even though your mum is going through such a hard time, she'll always be thinking as your mum and she'll want you to be protected and ok, just like you would be with your kids. So don't worry if you need some space to keep your strength up x

  • Just thought this might help - we had the same experience with Macmillan's district nurses, and didn't have a syringe driver offered. It's very much led by you I think, but please just call them if you want advice or even just to talk things through, as once you're looking after someone at home I think they just assume you're ok if they don't hear from you, and they just check in with you every few weeks x

  • [@Lmmrose]‍  I'm so, so sorry to hear about the deterioration of your mum, this part is unbelievably difficult, I understand from my mum. If your mum isn't able to consume too many liquids or food at this point, I would ask the district nurse if they are able to fit a driver for her pain relief.this helped my mum so much and you know she's stable and free of any pain. That is the most important thing at this point.

    I am sending you a lot of strength for the next while, your mum will appreciate the care and love you're showing to her. Take care of yourself too XXX

     

  • Hi, 

    I am in the same position myself .. they found my mum had secondary liver cancer 28th feb then found the main source on her lung ( small cell cancer ) second week of feb. We went to see the doctor regarding treatment to be told 3-6 months with them giving her 4 goes at chemo basically to give her a bit of time. That day she was that ill she was took straight in and spent 5 hours weeks there. The week after they gave her a half a round of chemo they called us back told us days to 2-3 weeks. They have got her back to a stable point now where she wanted to come home for final days to make memories with myself and my 20 year old brother and my two children but it's hard going. 
    she is the same tired, scared to sleep yet talking about months down the line and it's heart breaking as what do we say?? Every day I see a decline in her I'm still working as well and probably like you between that and two children there as much as I can but it's just heart breaking . Some days I just think I can't do this anymore just Easter Sunday the way she was I thought this is it then the next day she wasn't as bad. It's like a never needing roller coaster that u can't get off.. much love to you and your family you are not alone as much as you feel like you are ️ Xx