Sunday October 10th - I've really struggled today!

2 minute read time.

Mum was very unsettled last night.  Having slept from 8pm she woke at midnight for the loo and then could not settle.  I got her up at 1am and made her some tea whilst she watched CSI.  At 2am having given her another 2.5ml of oramorph I put her back to bed but she was up again at 5am for the loo and although I returned her to bed she kept saying she needed the loo.  After I had got her up and put her down half a dozen times I was resigned to no more sleep and got her up at 6am to wait for the carers at 7am.  When the carers arrived I departed.  I was just so upset that I had to get out of the house and let it all out.  So at 7.10am I was walking around the streets of Darwen with tears streaming down my face.  I felt so many different emotions and didn't want mum to see me upset.

I'm still not sure what is going on in mums head.  She is so uncommunicative but I can see that she is very anxious and agitated.   It breaks my heart to think that she is really scared and yet doesn't share her fears for fear of upsetting me.  Her appetite has dwindled and she is suffering constant indigestion.  She seems to be having difficulty swallowing and has also developed a persistent cough which is making her feel sick.  It's as if she's choking and is really scary.

My aunt and uncle are here until Wednesday so I at least have some support until then but I don't know what I'll do when they go if I don't get some evenings from the hospice at home.  I feel if I could get enough sleep during the night I'd be more than able to cope during the day and would enjoy my time with my mum, something I'm unable to do at the moment.  My aunt and uncle have seen to mum most of the day to allow me to get some sleep so at least if I don't get any sleep tonight I will have had some today but I won't be able to do that once they're home.

I think what I'll have to try and do when it's just me and mum is sleep when she sleeps.  She's been in bed sound asleep since 7.30pm so I suppose if I go at 7 too I may get a few hours before she wakes.  I keep telling myself it's early days and it'll get better when we get into a routine but today we have seemed a long way away from that and I feel that rather than getting nearer to that we are getting further away from it.  Tomorrow is another day.

PS Johnr - Thanks for the message re lansoprazole.  Mum is on a 30mg capsule in the morning but I will ask Tony, the nurse from the hospice whether this can be increased.  I've been giving her gaviscon during the day but am not sure I should be as the lansoprazole say not to take any other indigestion remedies with them.  Am hoping it just means at the same time?

 

Anonymous
  • FormerMember
    FormerMember

    Dear Caroline,

                      I have just replied to your previous blog not realising you had posted this one. One of the things I  said was that my sister would sleep quite a lot in her chair during the day, but when it was time to go to bed she became agitated and would not settle. However, she would sleep if she went back to her chair. She seemed to think that if she went to bed she might end up staying there for good. As your mum is getting up often "because  she feels she can" she may be thinking along similar lines. It is hard when the person you care so much for is obviously anxious but won't talk about it.

    You can't force them, all you can do is be there for them and you are definately doing this for mum.

      I do hope you get someone to cover nights as this is really the only way to ensure unbroken sleep.

       Thinking of you both,

                Lots of love,

                      lizzie xx

  • FormerMember
    FormerMember

    Dear Caroline, I agree with the others about grabbing sleep when you can, you need to look after yourself. Just a thought - could it be the Oramorph making your Mum confused? It affected my step-dad that way ... Sending you BIG hugs, Val XX

  • FormerMember
    FormerMember

    Here's hoping for a better day tomorrow, I'm sorry you had a bad day, the lanprozole, they've just changed my future FIL to one at night and one in the morning this seems to have got rid of his constant coughing.

    Thinking of you celi, huge hugs hun.

    Tiggs xx

  • FormerMember
    FormerMember

    sending BIG hugs too take care xxx

  • FormerMember
    FormerMember

    Hi Caroline, Hope you get some night time care soon,The marie curie nurses were a great help to us when we were in your situation. Grab a nap whenever you can,you need your sleep to be able to cope on all levels.  Take care   Sue  xx