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End of life drugs

Discussion in 'End of life care' started by Jotag, Aug 31, 2015.

  1. Jotag

    Jotag Registered User

    Aug 19, 2015
    14
    Hi all, just after a little help and information.

    My dads been in hospital for over 4 months and has began to be bedridden and eating and drinking very little and seems general very week.

    Macmillan came to visit my dad a few days ago and after I explained the issues hes has been experiences ( more pain and hucallating stiff joints ) the have now increased his morphine patch and issued a prescription for midazolam although the midazlom hasn't been given to dad yet ( I do think he needs it tho another story ). I was told that midazolam is a end of life drugs ?? Once this is given to dad does that mean th e end is near? Or could he be on it for months ??

    So confused right now ,so hard to watch my dad suffering each and every day

    J
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    I found this which may explain something about the drug:
    http://www.drugs.com/cdi/midazolam.html

    Is it possible to talk to the Macmillan nurse more about the use of this drug? Also if your Dad is still in hospital I suggest you make an appointment with the Consultant responsible for his care - the Ward Sister should advise on this. Then hopefully you could have a straight forward discussion about the prognosis and use of the drugs.and

    I do understand how distressing this is for you - a very difficult time.
     
  3. Jotag

    Jotag Registered User

    Aug 19, 2015
    14
    Hi

    Thanks for the information on the drug. I have a meeting with the consultant on mon 7th. And I'm hoping to meet with the Macmillan nurse tomorrow for a more clear understanding of when and if this new medication with be used.

    I was informed by a nurse today , that as my dad is still eating and drinking ( not even enough to feed a sparrow) they can't start end of life drugs .. My question is does the Brain still tell people with advanced alz to stop eating ( which normally happens when the body starts to shut down ) as at the minute either myself or a career is telling my dad to open his mouth for food or drink and he does ? Well he trys , not always successful. But I must admitted something's I feel like I am forcing him to take the food/drink .. He's so uncomfortable right now has been for weeks, but they stay there nothing they can do !!

    J x
     
  4. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    My husband went through phases you describe several times. I was alerted to 'end of life' many times but he somehow came through them over a period of 2 years. I think it right to keep trying with food but not to force - I am sure you know that!

    I found jellies and yoghurts went down well with my husband as they were tasty and easy to swallow. When he did not want food he just clamped his mouth shut! I did ask for end of life drugs to be available as my husband deteriorated, mainly because I dreaded aspiration pneumonia (he was coughing a lot). They were available to the NH nurses for months and were never needed as he died peacefully in his sleep.

    I hope you find the consultant helpful. It may be worth saying that your want your Dad to be kept comfortable - they then may suggest some medication to help him.

    Keep posting and update us on how things are. Best wishes
     
  5. MirandaT

    MirandaT Registered User

    Jul 19, 2010
    94
    Spain
    Keep an eye on whether he is still swallowing food. My mum, three weeks before she died, would take food into her mouth but no longer swallowed - the food just stayed in her mouth. that was the point where the GP advised that we stop giving her food and she was deemed to be on end of life care.
     
  6. Jotag

    Jotag Registered User

    Aug 19, 2015
    14
    End of life

    Hiya

    Thanks for all the information, nice to hear from people in similar situations. You do sometimes feel you the only one dealing with it !

    Dads is swollening food but not every mouthful its hit and miss. Yes I agreed beckyjan yoghurts do seem a nice easy treat. My dad is also coughing a lot mainly when asleep if you don't sit him up he would choke. Im hoping the consultation is helpful to I'm completely dreading the meeting. Like you stay comfort is the main thing now and I will be pushing for this.

    Been to see dad again today and he slept the whole 6 hours I couldn't bar to leave him dragged my self away at 8pm. He seems very weak today and couldn't even open his eyes or mouth. Asked the nurses to stay in touch if anything changes. I don't have a good feeling .

    J x
     
  7. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    So sorry to hear that your Dad is in pain, wonder if he slept through your visit because of the increased morphine. Hopefully it is making him comfortable but if he is still suffering perhaps you can ask the consultant to prescribe something that will help him now.

    This must be such a difficult time for you, I hope there are other family members who are helping to support you emotionally. Take care.
     
  8. Jotag

    Jotag Registered User

    Aug 19, 2015
    14
    Hi

    I'm not really sure if dad is in pain, but is restless and agitated and hucallating all the time he is awake. I am going to ask for a new drug to help with the the above issues, doesn't seem fair that after all these years of suffering he is still suffering at this late stage. I went to the hospital today again as usual only to find my dad hooked up to another iv drip, I found this very distressing ( this is the 2nd time this has happened ) I feel that they are prolonging my dad rather than just getting his comfortable. Really confused but was told by staff they knew I would be unhappy about the iv drip but as my dad has been sectioned they has the final say ..

    Unfortunately I am going this alone ( I am married but, men aren't great at these things he try's thou ha )

    j x
     

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