Are we nearly there....

FormerMember
FormerMember
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Since coming out of hospital after urosepsis my husband seems to have gone downhill. Sleepy, no appetite, no interest in getting out of bed, whereas before he'd let me hoist him into the wheelchair at least daily, sometimes twice a day. We have had - at last- the palliative care team in to assess and the wheels have been put in motion for continuing health care funding. 

He's been having a few odd episodes of disorientation, but last night it seems to have progressed with avengance. He thought his bed was wet, he told me he'd been watching a programme on the TV about the Beatles, he said our son had called in with a load of other people and made him a drink......all at 4am!

I contacted the hospice community team and the DN who did call in. He doesn't seem to be brewing an infection. 

He's had lots of conversations with people today - no idea who! 

The nurse at the hospice said, to try and re-orientate him, but if he gets cross just go along with it, which I've done.

It's been quite a difficult day, I'm guessing he's nearing the end of his life,  but I wonder if   anyone else has experienced anything similar. 

  • What you descibe is quite common I believe I have heard of other people experiancing this.Very hard for you but probably its as you guessed its part of a process that is now began .My thoughts are with you kerp posting we will try and support you through this you are not alone lots of hugs xxx

    Granny Sue

  • FormerMember
    FormerMember in reply to Granny Sue

    Thank you Granny Sue for your reply. It's comforting to know that others go through this too. It's so sad to see him like this.  I've put music on to try and distract him, I'm not sure if it's helping or not, but I feel helpless. I try to keep the tears at bay when I'm close to him & just let them fall freely out of sight. 

  • I know its so. heartbreaking isnt it..The music is a good idea before Bill got cancer I worked as a nursing assistant at the local hospital and would always put the radio on for patients in rooms on their own .Music is a wonderful escape for me now as well.when I cant sleep .Look after yourself lots of hugs xx

    Granny Sue

  • FormerMember
    FormerMember

    I am experiencing this with my dad . A week ago we thought he was within days of the end as he was very sleepy, had no appetite, and emotionally he had seemed to give up. He now seems to have this renewed energy but is very confused, disorientated, hostile, and emotional. Last night I had to make him a coffee at 2am, because he demanded it and then started to try to make one himself by trying to operate the oven. He then started tossing things off the counter tops and talked at length about data mining and a computer programme being put into his body. As he's still mobile (with a walker), this is a scary time. 

    In my dad's case his confusion is from extensive secondary brain cancer, though I understand this can happen due to infection, pain medication, and other things. That's good that the nurse has been to see your husband and is monitoring his physical health. It's extremely challenging and I second the nurse's advice to just go along with it if the person gets agitated. It's very difficult though and, at least in my case, I feel it's an indication of nearing the end.

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for replying.  Your poor dad seems to be very disorientated - I hope you have some help with him, it can be so very frustrating and hard on you as a carer.

    My husband now has some medication to help with the hallucinations and nausea.  He's not eating anything to speak of, I give him whatever he fancies - but he may have a mouthful or so but then that's it.

    Somedays I wonder how long he can go on with little to no sustenance.  He's been in pain quite a bit over the past couple of days too, he's got a morphine patch and has oral morphine for breakthrough pain which sorts it out. 

    It's his birthday tomorrow.  x