getting tough

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jim and i
jim and i Member Posts: 1,788 Member
in Head and Neck Cancer #1
Twenty-two rads down and it is getting tough on Jim and I am really worried about him. His jaw is very swollen, he has the beginning of thrush [started meds yeaterday], sleeps all the time and is very confused and disoriented. Yesterday afternoon he had disconnected the t tube to his PEG and left it open, the formula was draining out of his PEG. Tonight I found him sitting on the side of his bed with the wrist strap of his flashlight around his ankle. When I hooked up the feeding tube he kept trying to disconnect it. Even after I put him to bed I walked in and he was disconnecting it again. Said he had to undo his buckle. I finally laid down with him to make sure he let it alone until he went to sleep. I hope he doesn't wake up and unhook it again while I am asleep. I sleep like the dead. He has been talking weird since he started the Lortab. Maybe it is his age? He is 76. I am so afraid these side effects are going to do him in.

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  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
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    call the doctor and the pharmacist
    They are very accustomed to such issues and can give you advice on how to proceed.

    Don't try to do this alone.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #3
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    Call The Docs
    By all means, call your doctor ASAP. Perhaps they need to change his medication, increase/decrease the dosage etc. Stay strong. Cheers.

    Jimbo
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #4
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    Jim and I, I know this is
    Jim and I, I know this is very hard on you too. Remember in 6-8 weeks everthing will get better. He is young enough to beat this but it does sound like he might be taking too much medication. We will be praying for you both. Hang in there, Homer and Connie
  • DrMary
    DrMary Member Posts: 531 Member
    #5
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    connieprice1 said:

    Jim and I, I know this is
    Jim and I, I know this is very hard on you too. Remember in 6-8 weeks everthing will get better. He is young enough to beat this but it does sound like he might be taking too much medication. We will be praying for you both. Hang in there, Homer and Connie

    The Fog
    A lot get it - I think your concern about his medication adding to it is well-placed, but you also don't want him in too much pain. Our chemo guy said he had patients that needed to be hospitalized at this point - not because they were so sick, but because they were just too weak and disoriented from the drugs. He actually made it sound a bit attractive - he checked them into the same hospital where they got radiation and they'd be wheeled down every morning (we saw some of these folks) and they pretty much slept the rest of the time.

    I'm hoping you get some good answers from your doctor and you are able to clear up his brain enough to keep him home, but I thought I'd let you know that it is not the end of the world if they recommend hospitalization.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #6
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    DrMary said:

    The Fog
    A lot get it - I think your concern about his medication adding to it is well-placed, but you also don't want him in too much pain. Our chemo guy said he had patients that needed to be hospitalized at this point - not because they were so sick, but because they were just too weak and disoriented from the drugs. He actually made it sound a bit attractive - he checked them into the same hospital where they got radiation and they'd be wheeled down every morning (we saw some of these folks) and they pretty much slept the rest of the time.

    I'm hoping you get some good answers from your doctor and you are able to clear up his brain enough to keep him home, but I thought I'd let you know that it is not the end of the world if they recommend hospitalization.

    Thanks Mary,
    I have cut back
    Thanks Mary,

    I have cut back the amount of pain meds this morning. I will see if that works on the pain and helps the confusion.

    Jim got up in the middle of the night to go to the bathroom and couldn't find his way back to the bed. He also must have left the PEG undone because he awoke soaked in formula. I slept through it all. He insist on sleeping in thet room so I don't hear him get up. I guess I will have to insist that he sleeps in our room from now on.

    I think that hospitilization might be the best at this time, if the doctor and insurance company agree. Should I ask for this?

    Blessings
    Debbie
  • DrMary
    DrMary Member Posts: 531 Member
    #7
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    jim and i said:

    Thanks Mary,
    I have cut back
    Thanks Mary,

    I have cut back the amount of pain meds this morning. I will see if that works on the pain and helps the confusion.

    Jim got up in the middle of the night to go to the bathroom and couldn't find his way back to the bed. He also must have left the PEG undone because he awoke soaked in formula. I slept through it all. He insist on sleeping in thet room so I don't hear him get up. I guess I will have to insist that he sleeps in our room from now on.

    I think that hospitilization might be the best at this time, if the doctor and insurance company agree. Should I ask for this?

    Blessings
    Debbie

    By all means ask
    I think you can make a case for it - as I recall, he is getting the majority of his feeding at night, so undoing his PEG is interfering with his healing. The tough one will be convincing insurance - they might suggest an intermediate approach of supplying a night nurse. I found our doctors (and nurses) really knew what they could get out of the insurance companies and how to do it, so I'm hoping they can help you out here.

    Any chance you can ask someone to stay with him tonight so you can get some sleep and he can stay connected?
  • CLRRN
    CLRRN Member Posts: 127
    #8
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    Staying strong....
    The pain meds can definitely contribute to confusion. Sometimes with age, medications are broken down (metabolized) slower and he may have a higher build of the pain med circulating in his body. Although he is receiving tube feedings, he may be dehydrated and that can definitely cause confusion. Maybe you alter his feedings so they are during the day. Suggest getting a 6 inch ace bandage to wrap around him to keep the PEG tube secure during the night. Maybe he will be less likely to bother it.

    These are just suggestions...stay strong.

    Chris
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
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    CLRRN said:

    Staying strong....
    The pain meds can definitely contribute to confusion. Sometimes with age, medications are broken down (metabolized) slower and he may have a higher build of the pain med circulating in his body. Although he is receiving tube feedings, he may be dehydrated and that can definitely cause confusion. Maybe you alter his feedings so they are during the day. Suggest getting a 6 inch ace bandage to wrap around him to keep the PEG tube secure during the night. Maybe he will be less likely to bother it.

    These are just suggestions...stay strong.

    Chris

    I was also out of it, very
    I was also out of it, very weak and confused, and did a lot of stupid things, because I was out of it. My grandmother is senile, so she didn't ever check on me at all. My dad would come down to feed the dog, and check to see that I was still breathing, but that's about it. Honestly, there was a time, I should have been in the hospital. I don't know how I got through that sometimes. The hospital doesn't sound like a bad idea to me, but I think I would at least sleep in tge same room as he is.

    At one point I was so out of it that I never changed my fentanyl patch and had hard core full on withdrawal. Lemme tell you that wasn't pleasant. I thought I was going to die. Then I finally figured out what the heck was wrong with me. :-/
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #10
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    CLRRN said:

    Staying strong....
    The pain meds can definitely contribute to confusion. Sometimes with age, medications are broken down (metabolized) slower and he may have a higher build of the pain med circulating in his body. Although he is receiving tube feedings, he may be dehydrated and that can definitely cause confusion. Maybe you alter his feedings so they are during the day. Suggest getting a 6 inch ace bandage to wrap around him to keep the PEG tube secure during the night. Maybe he will be less likely to bother it.

    These are just suggestions...stay strong.

    Chris


  • Lelia
    Lelia Member Posts: 98
    #11
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    Sounds very familiar.
    I'm so sorry you and Jim have to go through this. Hope you've contacted the doc by now, other posters have mentioned and I agree that medication may be a part of the disorientation, my husband had similar reactions when they put him on flexeril, dilaudid and ativan when he'd been doing fine on none of those. He babbled incoherently and other embarrassing things we could have avoided if the hospital docs had just discussed his meds with our onco.

    Dehydration can contribute to disorientation too. While in radiation and on the PEG Jevity, I gave at least 8 oz H2O every 90 minutes.

    Hope you hear back soon from your doc or her NP, please let us know.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #12
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    sweetblood22 said:


    getting worse
    I plan on sleeping in same room tonight. I had to go out for an hour and when I returned Jim was standing outside in his underware looking for his pants. I guess I can't leave him alone at all so I will have to see about getting some help or hospitilization. Can't wait to het him to the doctor tomorrow.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #13
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    jim and i said:

    getting worse
    I plan on sleeping in same room tonight. I had to go out for an hour and when I returned Jim was standing outside in his underware looking for his pants. I guess I can't leave him alone at all so I will have to see about getting some help or hospitilization. Can't wait to het him to the doctor tomorrow.

    Oh my.
    Yeah, that doesn't sound good. Glad you guys are going to the doctors tomorrow. Extra prayers for you guys tonight.
  • DrMary
    DrMary Member Posts: 531 Member
    #14
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    jim and i said:

    getting worse
    I plan on sleeping in same room tonight. I had to go out for an hour and when I returned Jim was standing outside in his underware looking for his pants. I guess I can't leave him alone at all so I will have to see about getting some help or hospitilization. Can't wait to het him to the doctor tomorrow.

    Not just a night time thing
    Sounds like you will need around-the-clock help, either at home or in the hospital - this is after you cut back on the meds, right? I'm sorry you're having such a tough time - he probably seems pretty strange to you. I think you will get your husband back once the treatment's over and he doesn't need the pain killers, but he's in his own world right now and you can't do this at home alone. You both will be in our thoughts tonight.

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